Academic and Social Adjustment of University Students with VI
Academic and Social Adjustment of University Students with Visual Impairment Nitsan Almog School of Education Ph.D. Thesis
Submitted to the Senate of Bar-Ilan University
Ramat-Gan, Israel
March, 2011
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Academic and Social Adjustment of University Students with VI
This work was carried out under the supervision of Dr. Dvora Court, School of Education, Bar-Ilan University.
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Dedicated to the memory of :
My beloved brother Eran who taught me about unconditional love and about respecting the dignity of every person without saying a word
&
My precious student Tamar Chen who lightened my way without seeing it
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Disability identity is about stories, having the space to tell them, and an audience which will listen. (Shakespeare, 1996; 111)
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Acknowledgments ________________________________________________________________ This dissertation is the end result of the help, guidance, and support of many individuals. My first thanks go to all the students who have told me their stories throughout the years. I hope this dissertation honors not only those stories I have been able to quote, but also the many others that taught me about blindness, disability, and higher education. I would especially like to thank the 16 individuals who participated in this study. I deeply appreciate the time they set aside from their busy schedules, and their sincerity, openness, and willingness to speak their very personal truths. I hope, as they so fervently hoped, that this study will bring about change and be responded to positively. Dr. Dvora Court, my advisor, deserves so much more than a simple “thank you” can provide. I know that I have been blessed with the opportunity to be her student and I cannot express enough gratitude to her. Her support, encouragement, and guidance throughout every step of this amazing journey were most significant to me. Dr. Court provided me with invaluable feedback which strengthened the design of this study, and with a unique approach to the interpretation of the results. I appreciate all that I have learned from her, and the experience and pleasure of working with her will accompany me in my future career and all that I do. I want to express a deep thanks to my friends from the reflexivity group at the Israeli Center for Qualitative Research of People and Societies, at Ben-Gurion University of the Negev. I am grateful for the opportunity to meet amazing people like them, and for their advice and perspectives, which assisted in my understanding of many of the issues involved. They all were a tremendous source of knowledge, inspiration, and encouragement throughout this journey. I look forward to further collaboration. To Tchiya and Dudu Klinger Efron, who opened their heart and home and allowed me to stay at the most peaceful and beautiful farm in the south of Israel, which gave me both the quiet and the inspiration for writing up the findings of this research.
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I must thank my family and friends, who have offered support and encouragement all along the way. Most of all, to my parents―my mother, who has always believed in my abilities and suggested that I submit an application for the presidential scholarship which made this research possible, and my father, who taught me devotion and persistence. And, last but not least, to my amazing, sensitive, and smart children, who were born with this research proposal and grew along with it. I know that you both have had to give up so much while I have committed my time to this research, and I admire and love you so much for your support and patience. And to my dearest partner, who encouraged and supported me during the intensive process of writing up this dissertation―I have learned so much through our discussions, and this piece of work would not be the same without your influence. I am so lucky to have all three of you in my life, you are my light.
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Table of Contents
___________________________________________________________________________ Abstract .................................................................................................................................... 1 Introduction ............................................................................................................................. 4 Part I - Research Background ................................................................................................ 6 Setting the Scene ................................................................................................................... 6 Definitions of Blindness ........................................................................................................ 7 Visual Functioning Model ..................................................................................................... 8 Developing a New Model ................................................................................................... 10 The Importance of Higher Education for People with Visual Impairment ......................... 10 Dimensions of Adjustment to the Academic World ............................................................ 11 Academic adjustment ...................................................................................................... 12 Social adjustment ............................................................................................................ 14 The Social Model of Disability ........................................................................................... 16 Inclusive Education in Higher Education ............................................................................ 18 Governmental Policies toward Students with VI in Israel .................................................. 19 Part II - Research Purpose ................................................................................................... 22 Uniqueness of the Current Research ................................................................................... 23 Importance of the Research ................................................................................................. 23 Part III - The Research Design and Methodology .............................................................. 25 1. Doing Disability Research - The Choice of Methodology ............................................. 26 The principles of the emancipatory research paradigm .................................................. 27 Insider - outsider research ............................................................................................... 30 2. The Research Process ..................................................................................................... 32 Student recruitment and sample ...................................................................................... 32 Methods .......................................................................................................................... 33 Interviews .................................................................................................................... 33 Interview techniques - Verbalizing the lost visual information ................................... 36 Procedure ......................................................................................................................... 36 Section 1 Page VII
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“Leading” - On the way to the interview .................................................................... 37 Physical closeness ....................................................................................................... 38 3. Data Analysis .................................................................................................................. 38 4. Trustworthiness of the Study ........................................................................................... 42 Dependability .................................................................................................................. 43 Credibility ....................................................................................................................... 44 Transferability ................................................................................................................. 45 5. Ethical Considerations and Methodological Issues ........................................................ 45 Insuring anonymity ......................................................................................................... 46 Reflectivity and the role of the researcher ....................................................................... 47 Ethics of observations: using Sighted Society codes when researching persons with VI .............................................................................................................. 48 Making observations with eyes closed ........................................................................ 49 Visual concepts - Use of sighted society codes by persons with VI ............................... 50 6. Summary ......................................................................................................................... 50 Part IV - Research Findings and Discussion ...................................................................... 51 1. Themes that Emerged from the Data and Represent the Experience of all Participants 53 Theme 1: “Everyone is regular and everyone has a disability” - Between Normalizing Disability and Disabling Normalcy ....................................................... 54 Normalizing the disability - I can do it just like everyone else ................................... 55 Disabling normalcy - Everyone has a disability .......................................................... 57 Compulsory able-bodiedness and the desire to be like the others ............................... 59 Summary ..................................................................................................................... 60 Theme 2: University as a Disabling Environment - Barriers to Learning and Obstacles Along the Way .............................................................................................. 63 The Israeli case of people/ students with disabilities .................................................. 63 The Israeli disability discourse as a language of oppression ...................................... 67 Oppression and discrimination in university exams ................................................... 68 Other events of discrimination and oppression ........................................................... 71 Section 1 Page VIII
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Summary ..................................................................................................................... 73 Theme 3 : Between Independence, Dependence and Interdependence ................... 75 Orientation and mobility ............................................................................................. 76 Writing during the lesson / taking notes ...................................................................... 77 Reading and summarizing learning materials ............................................................. 80 Preparing for exams .................................................................................................... 83 Theme 4 : Impairment Effects and Their Interactions with the Disabling Environment .................................................................................................................. 85 1. “Like the turtle, one step at a time, slowly slowly, but it works out” - Increased time required for learning ............................................................................................ 86 2. Forced intimacy ....................................................................................................... 90 3. Participating in class discussions ............................................................................ 93 4. Practical Work - between impairment effects and disability ................................... 94 Summary ..................................................................................................................... 96 Theme 5: Social Relationships and the Quest for Personal Identity ........................ 97 University environment as a socialization agent ........................................................ 98 Using humor, using guide dogs - Different ways to get into social interactions ......... 99 “Friends should be friends” - Student - reader/ tutor interaction .............................. 101 Playing war - playing solitaire: Attitudes towards the in-group and the out-group .. 102 Achieving disabled identity ...................................................................................... 105 Academic and social success as a dyad ..................................................................... 107 Summary ................................................................................................................... 109 Theme 6 : Closeting and Coming Out - On the Way to Self-Disclosure ................. 110 Self closeting and coming out ................................................................................... 112 Social closeting ......................................................................................................... 116 Summary ................................................................................................................... 116 Theme 7: What Kept Me Going On ? External Influences and Internal Forces .. 118 Information on benefits of attending university and career aspiration ..................... 118 University as an enabling environment - Faculty, staff and support services ........... 119 Section 1 Page IX
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Family support .......................................................................................................... 121 “I have proved that I can do it” - Internal forces ....................................................... 123 Religious belief ......................................................................................................... 126 Summary ................................................................................................................... 126 2. Time Line Analysis ...................................................................................................... 129 First year of studying ..................................................................................................... 129 The registration process ................................................................................................ 130 Facing the university as a system .................................................................................. 132 Natural adjustment - Leaving the parents’ home .......................................................... 133 First year conclusions - a summary from a mature perspective .................................... 134 Second year of studying ................................................................................................ 135 Improving living conditions .......................................................................................... 136 Complicated learning tasks ........................................................................................... 137 Studying in university as a maturation phase - Managing disability ............................ 139 Part V: Conclusions and Implications ............................................................................... 142 1. Experiences of University Students with VI Regarding their Adjustment Process ...... 142 The linear and spiral pathways of the adjustment process ............................................ 144 2. Individual Student Characteristics which Shape the Nature of their Adjustment Processes ........................................................................................................................... 145 3. The Impact of Environmental Factors on the Experience of University Students with VI 148 4. The Impact of Disability and Impairment Effects on the Experience of University Students with VI - Identity Formation through an Academic Journey ............................ 150 5. The Academic Journey - a Shift from the Personal to the Political, from the Medical to the Social Model ................................................................................................................ 152 Limitations ........................................................................................................................ 154 Research Implications ....................................................................................................... 155 Epilog - Reflections on My Own Academic Journey ........................................................ 156 Bibliography ........................................................................................................................ 159 Section 1 Page X
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Appendices ........................................................................................................................... 177
List of Tables 1
p. 33
List of the participants The diverse discourse - different names in which students with
2
disabilities are being called at universities and students
p. 64
organizations websites 3
The accommodation discourse - Hebrew terms and english
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translation 4
The journey from the medical model to the social model as
p. 153
represented by the four levels of the current study
List of Figures 1
The Visual Functioning Model (Corn, 1983)
2
The seven themes which emerged from the data and the interactions between them
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Abstract ________________________________________________________________ In the last two decades the number of university students with disabilities has increased steadily. Several articles have been published about that issue, but most of them examine students with learning disabilities (Anctil, Ishikawa & Scott, 2008; Braxton, Milem, & Sullivan, 2000; Heiman & Precel, 2003). The few studies that examined students with visual impairment (VI) dealt with specific issues like assistive technology, orientation and mobility, social interactions and personality issues. In Israel, so far, there have only been four studies about university students with VI.
The current research examined the academic journey of university students with VI, specifically the ways in which they experience their adjustment to university both academically and socially. The study explicitly aimed at incorporating students’ voices and, using in-depth interviews, to offer insight into students’ experiences of the process of adjustment, which would be analyzed from the students’ subjective point of view. The aim is to raise awareness of how students with visual impairment experience higher education and to improve the understanding of obstacles and barriers, but also to shed light on the strengths and inner resources that these students discover along the way.
The current research is a longitudinal qualitative study which examines the adjustment process of university students with VI during two years of their studies. The data was collected and analyzed due to the principles of ‘grounded theory’ (Glaser & Strauss, 1967). The research uses a ‘disability studies’ approach, thus adhering to the social model which describes disability not as a medical condition or a personal tragedy of the individual, but as the product of the interaction between the individual and society. This approach also promotes the adoption of a model of research named by Oliver (1992) as the ‘emancipatory paradigm’, which was utilized in the current research. This paradigm draws explicitly upon people with disabilities’ collective experience and so challenges directly the widespread social oppression of this group. Section 2 Page 1
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Results of data collection (35 semi-structured, in depth interviews and 7 telephone interviews) are presented in two different sets of themes. The first section includes seven themes which represent the experience of all participants. These themes do not refer to a specific point in time, or to a specific participant. The second section presents a set of themes that emerged according to a timeline analysis.
Though academic and social adjustment are discussed separately in the literature review, these two processes interact all along the way. All participants in the current study described their experiences regarding social and academic processes jointly, while emphasizing the effect of social interaction on academic success. Accordingly, the seven themes which emerged from the data deal with both academic and social issues and present students’ experience as a whole. The first theme, which is also the core category, presents two complementary narratives participants used while configuring their identity. The second relates to environmental barriers in the academic world and demonstrates practical difficulties that students with VI experience during studying at university. The third describes the tension between independence and dependence, a very common issue when talking about people with disabilities. The fourth relates to impairment effects (Thomas, 1999) which are restrictions caused directly by the impairment, and thus they are not ‘disability’ in a social relational sense. The fifth theme presents different ways to create social interactions and their importance for students with VI. The sixth describe the processes of coming out and self disclosure, and the last theme describes internal and external forces that helped students with VI along their academic journey.
The timeline analysis combines participants’ experiences into a continuous artificial timeline that represents the period of time from entering university till graduation. This section presents the unique characteristics of different periods of the students' academic journey.
Participants in the current study were self determining their identity during their academic journey both as students and persons with VI. A close look at the process from different levels and perspectives reveals that this journey in fact started with the disability civil rights Section 2 Page 2
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movement of the seventies and now takes up an increasing part of societal thinking across the western world, a journey from the medical model to the social model. This process, emancipated not only the research participants but also me, through the shift from the personal to the political, a shift from the medical model to the social model, a shift toward a positive disabled identity.
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Introduction ________________________________________________________________ This is a study about the experience and adjustment process of university students with visual impairment (VI) within the higher education setting. The introduction provides an explanation to the research background and relevance of the study and presents the underpinning principles of the research. The remainder outlines the organization of chapters. In the last two decades the number of university students with disabilities in Israel and elsewhere has increased steadily (Borland & James, 1999; Bruder & Mogro-Wilson, 2010; Heiman, Almog & Godder, 2006; Hurst, 1998). This increase is due to the increasing acceptance of disability within society, among other factors. Of the many articles that have been published recently about the increasing numbers of students with disabilities in higher education in different countries, including Israel, most discuss the experience of students with learning disabilities (Anctil, Ishikawa & Scott, 2008; Braxton, Milem, & Sullivan, 2000; Heiman & Precel, 2003), or higher education policy and services for these students (Beaucham- Pryor, 2004; Hurst, 1998; Mole, 2008). Only a few articles discuss university students with visual impairment (Lewin-Jones & Hodgson, 2004; Pfau, 2007); of them, many discuss assistive technology (Gurb, 2000; Wolffe, Candela & Johnson, 2003). In Israel, so far, there have only been four studies about university students with visual impairment (Faraj, 2005; Heiman, Almog & Godder, 2006; Machmud, 2008; Salay, Igelstein & Refael, 1977). By contrast, the current study will focus on the whole, lived experience of students with visual impairment (VI) in higher education, and the views of these students of their adjustment process to university. The study will also explore and evaluate the relationship between the social model of disability and higher education.
Most of the students with VI who succeed in enrolling in higher education institutions face many academic and social barriers and have to develop techniques, strategies, methods and skills to adjust to university which many times is experienced as a disabling environment. These adjustment processes include adopting new learning skills which are necessary to meet academic demands, repeating the same course several times and even lengthening the Section 2 Page 4
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studying period at the university beyond the standard three years (Gurb, 2000). One of the reasons for the difficulties that many students face may be the lack of support for students with all kinds of disabilities at every university or college in Israel.
The current research uses a ‘disability studies’1 approach and thus focuses on different aspects of life in terms of disability, as socially understood, rather than in terms of living with visual impairment per se (in terms of medicalized discourse) (Thomas, 1999). The research utilized the ‘emancipatory research paradigm’. This research paradigm is about the empowerment of people with disabilities. It encourages and advances the generation and production of meaningful knowledge about the various structures that create and sustain the multiple deprivations encountered by people with disabilities. The role of the researcher is to help disabled people to remove barriers and promote their individual and collective empowerment, through the research process (Barnes, 2003). The research is a longitudinal, qualitative study which examines the adjustment process of university students with VI. The data was collected and analyzed according to the principles of ‘grounded theory’ (Glaser & Strauss, 1967).
The study consists of five further chapters. Chapters one, two and three present the theoretical and methodological framework. The fourth chapter presents the research findings. The data presented are accompanied by a full discussion of the findings combined with the relevant literature. This chapter includes two sections. Each describes a different set of themes. The first presents set of themes that emerged from the data and represent the experience of all participants. These themes do not refer to a specific point in time, or to a specific participant. The second section describes the adjustment process according to a timeline analysis. The final chapter presents the model derived from the ‘grounded theory’ analysis discussed throughout the dissertation and an epilog which presents reflections about my own academic journey.
1. In 2011, there is still no academic program in Disability Studies in any higher education institution in Israel.
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Research Background
Part I - Research Background
___________________________________________________________________________
Setting the Scene Between the years 2003 - 2006 I worked at “The Open University of Israel” with students with disabilities. At first, I worked only with blind students and then I was appointed as coordinator for students with disabilities at the Dean of Students’ Unit. While trying to give support and assistance to these students, I looked for a model or a theory which explains the adjustment process that they go through while attending university. Unfortunately, my search revealed a gap between the literature and the field, as most of the research that had been done about inclusion of individuals with disabilities into the education system deals with young students (kindergarten to grade 12). Dorothy Smith (1999, 8-9) wrote about her research: “I have not started writing on the basis of research data. Rather, I have started with a sense of problem, of something going on, some disquiet, and of something there that could be explicated”. My research started at the same point. I was eager to assist my students and consult them. I was silenced by their stories, such as “not even one student spoke to me during the whole semester” or “though I cannot see when I enter the classroom I feel that everyone is staring at me”. I tried to do my best, but that was not enough for me. This is how this research project started. In the last two decades the number of university students with disabilities has increased steadily. Several articles have been published about that issue, but most of them examine students with learning disabilities (Anctil, Ishikawa & Scott, 2008; Braxton, Milem, & Sullivan, 2000; Heiman & Precel, 2003). The few studies that examined students with visual impairment dealt with specific issues like assistive technology, orientation and mobility, social interactions and personality issues (Beaty, 1994; Hodges & Keller, 1999; Jacobson, 2005; Lewin-Jones & Hodgson, 2004; Klinkosz, Sekowski & Brambring; 2006). In Israel, so far, there have only been four studies about university students with visual impairment (Faraj, 2005; Heiman, Almog & Godder, 2006; Machmud, 2008; Salay, Igelstein, & Refael, 1977).
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Research Background
Moreover, many of the authors who wrote about coping with visual impairment were invariably sighted professionals who drew on their experiences in working with persons with VI, rather than people with VI themselves. Most of the material collected about this field is characterized generally by a negative focus on the problems that students with VI face during their studying and the factors that lead these students to drop out of university (i.e. Yuen & Shaughnessy, 2002).
The current research examined the ways in which university students with visual impairment adjust to university academically and socially. The study explicitly aimed at incorporating students’ voices and, using in-depth interviews, in order to offer insight into students’ experiences of the process of adjustment, which would be analyzed from the students’ subjective point of view. The aim is to raise awareness of how students with visual impairment experience higher education and to improve the understanding of obstacles and barriers, but also to shed light on the strengths and inner resources that these student discover along the way, and to create a model which maps positive academic and social adjustment.
Definitions of Blindness Professional literature presents “visual impairment” and “blindness” as two concepts placed on a continuous line. On the one extreme of this line is proper sight and on the other extreme total blindness (Kadmon, 1989). The dictionary definition also places blindness at the end of a continuous line which begins with proper sight. Its meaning is inability to receive light. Visual impairment relates to an injury to the eye or a neural injury in the visual system which can not be fixed/ repaired by glasses or regular optic aids. This impairment limits the individual’s ability to recognize or see details in a sharp and accurate way from a defined distance. A functional / rehabilitative point of view sees a person who use hearing and touch senses instead of sight in everyday life, or uses assistive aids (for example: Braille, a cane) as an alternative to seeing is defined as visually impaired / blind.
The legal definition of blindness in Israel (Salomon & Geffen, 1977) defines as blind a person who has one of these three limitations: Section 3 Page 7
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Research Background
•
Complete loss of vision
•
Acuity of not greater than 3/60 in the better eye with correction (with glasses on). This means a person who cannot count fingers presented at a distance of three meters in front of her/him.
•
A field not subtending an angle greater than 20 degrees (in the better eye).
Admission of a “blind / low vision certificate” is based on the functionality of the vision that remains for occupation, learning, mobility etc. This certificate provides rights such as tax exemptions, certain services and a tuition exemption at higher education institutions. All the participants in the current study are defined as legally blind by the criteria presented above. It is important to clarify the distinction between disability and impairment. As mentioned above, impairment is the physical fact of lack of vision. Disability is the social process in which the impairment cause negative implications to the individual due to barriers to access (Davis, 2006a; Oliver,1992). For example: blind students have impairments that limit vision, but are not disabled unless their learning materials are not accessible. As mention before the participants in the current study are students with VI. The current research will alternately refer to the participants as students with VI, disabled (by societal barriers) students or students with disabilities. Visual Functioning Model Corn (1983) defined blindness/ visual impairment from an educational - rehabilitative perspective, which refers especially to the functional ability to perform visual tasks that are required during learning. Corn (1983) proposed a three dimensional theoretical model by which a person’s low vision functioning is not only determined by the level of the impairment but also by other factors as personality, environment etc. The visual functioning model is a tool for examining and evaluating the functioning level of a person with VI. It provides information on the different factors that influence the functioning level. Moreover, it is possible to build a rehabilitative disposition by using the model since it allows finding alternatives in order to maximize the individual’s functioning. Section 3 Page 8
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Research Background
The dimensions are: 1.
Visual abilities - Physiological components of vision.
2.
Stored and available individuality - Past experiences and available functions the individual uses to react to new stimuli or for creative endeavors.
3.
Environmental cues - The visual attributions of objects (for persons who have vision remaining).
Using the model can provide a systematic way to locate components which can compensate for the visual impairment. By working on one of the components of one dimension of the model, professionals can elicit better performance on other dimensions too, for example: working with the individual on psychological makeup can result in better functioning and enhance the entire visual functioning.
Figure 1. The Visual Functioning Model (Corn, 1983)
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Research Background
Developing a New Model Corn’s model refers to a person with VI in a holistic way and suits the “people first” philosophy which claims that people with disabilities are first of all people, and should not be perceived mainly in terms of their impairment or disability. Moreover, the model emphasizes that environment is a crucial component that affects the person’s functioning competence. Corn’s model provides a good base for a three dimensional reference to the visual functioning; however it remains the only existing model, and it was developed almost thirty years ago. Corn (1983, p. 375) summarizes her article by writing that “the model may evolve through research and practice, ultimately containing different components than those suggested... The strengths and weaknesses of the model will be determined when professionals and individuals with low vision seek new ways to understand visual functioning.” The changeability of the model enables its application to various situations in the lives of persons with VI. The evaluation, rehabilitation and support which can be derived from it are multiple and can assist every person with VI to develop his or her function to the optimal degree. Based on this approach, the current research examined the functioning of university students with VI with reference to the three dimensions that the model suggests : the students’ visual abilities, individuality and the university’s environment. The research explored the interaction between these dimensions through adjusting them to themes that arose while examining the academic and social adjustment of university students with VI from their own perspective. The author’s intent was to use the theoretical model of Corn, develop it and make it rich and up to date. The Importance of Higher Education for People with Visual Impairment Figures concerning comparative numbers of people in employment and education show that people with disabilities are among the most disadvantaged groups around the world (Giddens, 2006). Higher education plays an important role in preparing one for adult life, both as professional training and as a mechanism of social motivation and socialization (Avrahami, 1997). Today it is known that high school graduation is not enough to prepare adults with Section 3 Page 10
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Research Background
disabilities for economic and social independence. People with disabilities are still behind the non-disabled population in almost every indicator of economic activity (Fairweather & Shaver, 1990). People with disabilities have lower employment rates than the rest of the population, no matter what their qualification level. In the U.S. for example, only 35% of working-age persons with disabilities are in fact employed, compared to an employment rate of 78% in the rest of the population (www.un.org/disabilities/default.asp?id=18, 2004). In Israel, only 28% of the legally blind population between the ages of 19 – 64 is employed (Smith & Smith, 1996). On the other hand, the rate of employment among legally blind graduates is very high 68% (Berman & Naon, 2004). This indicates the importance of higher education for persons with VI. In spite of this fact, the number of university students with VI is still low and they have to face many difficulties during their studying. Every year approximately 250 students with VI study at higher education institutions in Israel (Korsia, 2003). In the beginning of this research (2006/7) 369 students with VI attended higher education institutions (The Knesset Research and Information Center, 2006). Most of these students have academic and social difficulties and have to develop their own ways, methods and skills to adjust to university. Many of them discover that they do not have the learning skills necessary to meet academic demands. Some choose the so-called easy departments, have to repeat some courses several times or to lengthen the period of learning in university into additional years (Gurb, 2000).
Dimensions of Adjustment to the Academic World While attending university, students have to face many new and complicated tasks, not just academic and social but also personal. These might be perceived as threatening for a new student, and these tasks demand adjustment to new and varied experiences (Mechanic, 1962). Levi (2002) divided the process of adjustment to university into five different dimensions: •
Physical adjustment - Orientation to the new environment (campus, classrooms, offices, dorms etc.) Section 3 Page 11
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•
Research Background
Constitutional adjustment - acquaintanceship with the bureaucracy and administration procedures of university and other service procedures.
•
Academic adjustment - The broad concept of academic adjustment refers to motivation for learning, taking actions in order to comply with academic demands, sense of purposefulness and satisfaction from the academic environment (Gerdes & Mallinckrodt, 1994), as well as practical skills such as developing learning skills, writing and summarizing, thinking and memorizing, coping with masses of reading materials, submitting papers, summarizing lectures, writing seminars papers, effective time management and taking exams (Zeidner, 1992).
•
Social adjustment - The process of adjustment to campus life is a neutral phase in the maturation process of the individual and represents the transition from dependence to interdependence / autonomy (McBroon, 1997). Attending university provides a great opportunity for self development, participation in leisure activities and guidance toward occupation after graduation. This process includes several components: making friends, inclusion in campus life and social networking. All of these components are very demanding and require investment of time and energy. Gerdes & Mallinckrodt (1994) suggest that social adjustment of students may be as important as academic factors in predicting persistence.
•
“Natural” adjustment - Entering university takes place while a young person is transferring from adolescence to young adulthood (Erickson, 1968). Additionally to studying, the individual faces other tasks such as leaving home for the first time, finding mutually satisfying relationships, and choosing a profession.
The current study’s intent was to focus on two dimensions: academic and social adjustment.
Academic adjustment Being a student is a very demanding task which requires adjustment to brand new experiences. Academic adjustment is a process that is influenced by many factors including personal, familial and social as well as cognitive, intelligence and academic competence (Pascarella & Chapman, 1983). Besides the challenges that every student faces, students with VI have many more, such as learning orientation to the new place and creating a support Section 3 Page 12
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Research Background
network. The conceptual model of nontraditional undergraduate student attrition (Bean & Metzner, 1985) relates to three factors which affect attrition: 1.
Background and defining variables - Age, educational goals, enrollment status, residence, high school performance, gender and ethnicity.
2.
Academic variables - Study habits, academic advising, absenteeism, major certainty and course availability.
3.
Environmental variables - finances, hours of employment, outside encouragement, family relationships and opportunity to transfer.
This model demonstrates that varied and multiple variables affect academic adjustment and success. A variable like VI might be included in each of the factors because of its broad effect on the individual. VI is a background variable but it definitely affects the individual’s data and can also act as an environmental variable when interpreted as disability in its social context, as described below. A few studies have investigated aspects of the functioning of university students with VI. The following main difficulties were found: Practical learning tasks: students with VI reported having difficulties in reading from the board, submitting papers, reading and summarizing learning materials. Accessible learning materials: visually impaired graduates reported that their main problem was finding accessible learning materials (for example: Braille booklets), finding learning materials and using the library (Berman & Naon, 2004). Reading and understanding learning materials: even if the student acquired good learning habits during high school, academic demands in university are different (the amount of learning materials, learning and teaching methods etc.). While in high school learning is based mostly on alternative learning instruments (like touching / sensing), studying in university is mostly based on information received by the auditory channel, and therefore requires different preparations technically and cognitively (Faraj, 2005). While analyzing the learning competence of high school students with VI (Hoz & Alon, 2001) and blind Section 3 Page 13
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Research Background
university students (Ghesquiere & Laurjssen, 1999) it was found that both groups had difficulties in understanding verbal text through reading Braille, or by listening to the texts, in comparison to students with no impairment. It seems that students with VI lacked visual cues that promote understanding, reading and information processing. In spite of using Braille or listening to tapes, students had difficulties in receiving the text as a whole, scanning the text and retrieving key words or sentences. Lengthening of the time dedicated to learning due to impairment: for students with VI it takes 2 – 5 times longer than for a sighted student to learn the same amount of course material. The more severe the impairment, the longer time it takes (Ghesquiere & Laurjssen, 1999; Meister, 1998). Lack of acceptance and personal difficulties: visually impaired university graduates reported a feeling of being misunderstood and of non-acceptance of their disability by lecturers and university authorities (Berman & Naon, 2004).
Social adjustment In addition to academic adjustment, another critical factor which is related to persistence and success in university is social adjustment ability (Gerdes & Malinckrodt, 1994). Integration into the social environment was found to be an essential factor which influences one's commitment to the academic system (Tinto, 1975). For traditional students social integration means graduating, a feeling of acceptance and academic adjustment. For nontraditional students (such as older students or part time students) social integration is a measure of success (Bean & Metzner, 1985; Nora & Cabrera, 1996). Lack of social integration might be one of the factors that relates to dropping out of university and not finishing the degree (Hodges & Keller, 1997). McBroom (1997) reported that senior students and graduates with VI indicated eleven factors related to their academic success. Five of the factors concerned social interaction: contact with peers and professors, assertiveness, advocacy and independence, extracurricular activities and social networks, transportation and orientation and mobility skills.
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Research Background
Students with VI have many difficulties in the social – emotional field. Many skills which are necessary for social interaction are based on visual cues. Loss of sight influences the ability to recognize people or social situations (French, 1999). The lack of visual input makes it hard to recognize actions and emotions of the other and sometime mediation or interpretation is required (Rosenblum, 1997). The visual lack may cause a deficit in development of social skills and social rejection (George & Duquette, 2006).
The following factors about social adjustment and functioning of students with visual impairments were found: Social rejection and social isolation: Persons with VI often receive hostile and inappropriate behavior from their surroundings. In addition, they have fewer social experiences compared to their sighted peers (Beaty, 1994). French (1999) describes feelings of isolation, difference and shame which occur in everyday life conflicts, but also lack of acceptance by sighted people. Students with visual impairment lack confidence, expressed through patterns of passivity, dependence or an unwillingness to take responsibility (Gurb, 2000). Even when high school students with VI are included in a regular class this does not necessarily help them to interact with their sighted peers. Many of them still suffer from social isolation, fewer friends and inadequate social abilities (George & Duquette, 2006; Huurree & Komulaine, 1999). Less time for leisure activities: Depending on the type and severity of the impairment, these students required two to five times as much time to learn the syllabus and to prepare and revise lectures than did their non-disabled peers. Because of this extra effort, they also reported having less time for leisure activities (Meister, 1998). Blind and VI students in their first year of studying reported less social integration and participation in social activities than students in later years (Faraj, 2005). Lack of social skills: Many youths with VI experience over-protective care from their parents, families and service providers. Therefore they do not develop the social skills that are required for integrating into campus life (McBroom, Tedder and Kang, 1991). Students with VI are sometimes insecure and ashamed and have a hard time starting a conversation with others. This might lead to an uncomfortable situation when it comes to asking for help Section 3 Page 15
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Research Background
and might affect their performance of academic tasks (Vancil, 1997). Fewer friends and small social networks: Adolescents with VI listed fewer friends and significantly smaller social networks (Kef, 2002). Most adolescents with VI spend the afternoon by themselves, in contrast to their sighted peers who spend those hours with friends (Sacks, Wolffe & Tierney, 1998). The review of the literature presented above summarizes the studies that have been done so far about university students with VI. As mentioned before, the literature does not deal with the adjustment process of students with VI as a whole, but separates it into solitary components and themes. Most of these studies focused at the students themselves, sometimes examining them through a medical point of view, which seek for ways to overcome the disability and normalize it. The next section will present the social model of disability, which critique the medical approach and suggest a new point of view.
The Social Model of Disability Over the course of the twentieth century, the rise of the ‘medical model of disability’ influenced theorists’ and practitioners’ responses to disablement toward becoming ever more dominated by medicine (Barnes, 1990; Oliver, 1990). The ‘medical model of disability’ placed responsibility for the poverty and exclusion of disabled persons at their own hands, viewing this social predicament as an unavoidable outcome of functional impairments of the body or mind (Watermeyer, 2009). Critics of the ‘medical model’ pointed to its systemic ignorance of social factors which mediate the experience of disability, that was then viewed purely as a phenomenon of the disabled body. This critique led to the early establishment of the disabled minority as a political movement, which demanded recompense due to its discrimination and exclusion, which is at the heart of the appalling social suffering of people with disabilities (Barnes, Oliver & Barton, 2002).
The new disability paradigm that has emerged in the last two decades, describes disability not as a medical condition or a personal tragedy of the individual, but as the product of the interaction between the individual and his or her environment. As Oliver (1992: 101) claims, Section 3 Page 16
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Research Background
“disability is socially produced”. The model, known also as the sociopolitical or social model of disability, “locates” disability in society, not in the individual, and identifies social prejudices, inaccessible environments, discriminatory work arrangements and segregated education as disabling societal elements (Oliver, 1996: 32, 33). The model also breaks the causal link between impairment and disability, thus provides an empowering, proactive approach against disabling aspects of society. The model stresses that specific problems experienced by people with disabilities results from the totality of disabling environments and cultures (Oliver, 2004). For example, a visually impaired student is not disabled by his or her lack of sight, but by the lack of accessible reading materials (i.e. Braille, audiobooks) and stereotypical ideas about blindness. The social model breaks the link between the body and the social situation of people with disabilities (Shakespeare, 1992) and shifted the view from the impaired body onto society. However, using the social model solely may be problematic, since it ignores what Carol Thomas refers to as ‘impairment effects’ (Thomas, 1999). Impairment effects are limiting aspects of living with impairment that are not created by society; they are a direct result of being impaired (i.e. blind individuals cannot drive due to their impairment). In recent years a number of theorists , particularly feminist, claims that the social model should be extended (Garland - Thomson, 1997; Hughes & Paterson, 1997; Swain & French, 2000; Wendell, 1996). Their major criticism has been that the social model denies the individuals’ experience of the body (Morris, 1991) and neglects the fact that impairment plays a key role in the politics of disability as in the lived experiences of people with disabilities (Hughes & Paterson, 1997). The social model is accused for being ‘oversocialised’, reductionist and unidimensional (Thomas, 1999). However, it can be argued that any concentration on impairment will be counter productive for disabled people. The current research is aligned to the social model of disability, but also accepts that impairment effects influence the lives of people with VI.
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Research Background
Inclusive Education in Higher Education Till the end of the 1980s, integration was the main concept which promoted the right of disabled persons to an appropriate education. The integration approach problematizes students with disabilities, wanting to make them more like non-disabled students, rather than accepting them for who they are (Swain & Cameron, 1999). During the 1990s, the social model informed a theoretical approach to education which has come to be known as inclusion (Vislie, 2003). The Israeli Special Education Law of 1988, deals only with children and adolescents with disabilities between the ages 3 - 21. Notwithstanding that the law was intended to improve special education services, it reveals a paternalistic perception of people with disabilities, which empowers the educational system to exclude the child / adolescent and their parents from taking a part in the crucial educational decisions regarding their lives (Gunpel, 1996). Unlike the school system, which has to obey this law and mainstream students with disabilities, higher education has largely remained untroubled by the requirement to provide higher education for people with disabilities.
The situation in Israel is different from that in the U.S., where provision for people with disabilities in higher education institutions is committed to align with two important laws (Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA), 1990) (Mole, 2008). As Kanter (2010: 1) claims: “While the US has adopted a legal approach to mandate access to higher education and inclusion of students with disabilities in higher education, Israel seems to have eschewed a legislative mandate, in favor of a social welfare model of economic incentives and social supports.”
The Israel Equal Rights for People with Disabilities Law of 1998 is currently being adapted for higher education institutions, while its regulations are still being written. The aim of the law, similarly to the ADA, is achieving full inclusion for individuals with disabilities, and declaring the right of people with disabilities to be equal members of society who should be Section 3 Page 18
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Research Background
treated with respect and support (Vilchinsky & Findler, 2004). Meanwhile, higher education institutions are writing disability provision into their policies and making progress in the areas of accommodations and support services for students with disabilities, but their main emphasis is on solving individual problems, which occur due to disabilities, rather than making critical changes in the institution in order to include students with disabilities, change their culture and promote universal design principles. Governmental Policies toward Students with VI in Israel Though higher education institutions are not committed to support students with VI, other governmental services, such as the National Insurance Institute of Israel, and the Service for the Blind, do have policies that define the rehabilitation program for which people with VI are eligible. In order to be eligible for a rehabilitation program the individual has to go through a process which ultimately defines his/her eligibility for funding and support services (such as tutoring/ reading hours). The process begins with an evaluation and assessment of the functioning level of the individual. According to these, a rehabilitation program is constructed jointly by the rehabilitation worker and the person with VI. The intention of the program is to be practical and to give the person an occupational potential. Today, almost every department for B.A. is being approved. After the rehabilitation program is ready it is transferred to the National Insurance Institute of Israel (NII) for funding approval.
The rights of university students with VI are: 1.
Tuition fee funding - financing of the tuition fee in all higher education institutions that are acknowledged by the Higher Education Council. The tuition is paid by the NII in one of two different ways : a. The student pays the university and gets a refund after producing a receipt from the university. b. The NII pays the tuition to the university directly.
2.
Financing of an accessible computer station (assistive technology) - the funding Section 3 Page 19
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Research Background
request should be submitted while registering to the university, since its approval is a long process. This process also begins with an evaluation of the student’s needs and abilities, together with examination of which technology would be most useful for the individual (i.e. Braille monitor, Text to voice software etc.). Since the equipment is very expensive (such stations can cost up to 32,000 NIS) and the rehabilitation services are aware of the high percentage of students with VI dropping out of university, this process is delayed so that students receive the equipment only in the second semester, after showing academic success in the first semester. Students in the first year can borrow the equipment from “ALEH - The society of blind and dyslexic students in Israel”. Obviously, this regulation is problematic in view of the fact that it is almost impossible to fulfill academic demands without access to a proper and accessible computer station. Another possible option for the students is to purchase the equipment and get a refund from the NII. Undoubtedly, this regulation discriminates against students with lower economic status. This issue will be discussed in the study results. 3.
Reading and tutoring hours - University students with VI receive funding for reading and tutoring hours. This budget for these hours is managed by ALEH, which gets the money from the NII and pays it directly to the readers/ tutors. In order to get this funding the student must connect the coordinator in ALEH who recruit the reader/ tutor with the coordinator for students with disabilities in each university. Readers / tutors are usually university students from the same department who are more advanced in the study program. The recruitment process may also take a long time and the reader/ tutor does not always match the requirements of the student with VI. This issue will also be discussed in the results.
4.
Accessible learning materials - students can send books to the recorded academic library at ALEH, which records learning material in different academic and preparatory course areas. Books must be sent three months before the semester begins.
5.
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Research Background
reimbursement. Student must present their grades sheet to the NII in the end of each year in order to continue receiving the funding.
Apart from this provision, students are eligible for accommodations that are provided by the higher education institute in which they study. Most of the accommodations are specific for exams, and do not refer to the whole learning process the student has to go through. These accommodations include extra time, a personal reader, a Braille format of the exam form, writing the exam with an accessible computer and splitting the exam into two terms (in special circumstances).
The current research will explore and discuss the aspects of governmental and higher education policies that influence the adjustment process of university students with VI, as it is experienced by them. Environmental, attitudinal, economic and institutional barriers that appeared in interviews will be analyzed in light of Israel’s policies.
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Research Purpose
Part II - Research Purpose
___________________________________________________________________________
As a person with visual impairment, the purpose of the research was especially important to me. As I wrote the research proposal I recognized that it would be difficult for me to remain an objective observer in the research process, as I too have experienced difficulties and conflicts and bring these experiences to the research. As a qualitative researcher who holds political agendas and aims for social change, I planned the current study in a way that would enable me to express the participants’ world in order to learn from their experiences. The current research, like many other qualitative studies, is inquiry-guided (Mishler, 1990). In contrast to the hypothesis-testing model of research, where types of data and analyses are pre-specified and unchangeable, the current research questions, data collection and analysis process were flexible and broad. These characteristics also fit ‘grounded theory’ methods, where a set of flexible analytic guidelines enable the researcher to focus the collection of data, analyze the data and build theories (Charmaz, 2006). This research intended to examine broad aspects of the question of the adjustment of university students with VI. The adjustment process was examined from the perspective of the student's subjective point of view, using in-depth reference to social and academic factors.
With reference to the studies presented in the first chapter, and based on the visual functioning model (Corn, 1983), the following central question emerged to guide the current study: How do students with VI experience their academic and social adjustment to university ? The investigation focused on three complexes of questions: 1. How do individual student characteristics shape the nature of their academic journey? 2. How do environmental factors impact on the experience of university students with VI? 3. How do disability and impairment effects impact on the experience of university students with VI? Section 4 Page 22
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Research Purpose
The current study seeks to remedy the lack of information about university students with VI by documenting systematically the impact of the impairment and its implications on their lives from their own perspective.
A grounded theory approach encourages researchers to remain close to their studied worlds and to develop an integrated set of theoretical concepts from their empirical materials that not only synthesizes and interprets them but also shows the process and development of relationships.
Uniqueness of the Current Research The current study differs from other studies which examined people with VI in three dimensions: Using qualitative methods combined with the emancipatory paradigm2 allowed the researcher to focus on students' initial experiences with the academic system, as subjectively perceived by them. Conducting a longitudinal study that accompanied the students throughout two years of their university studies. Referencing the complex processes of adaptation and adjustment academically and socially. The studies described in the literature review treated components in the adjustment process separately (e.g. Berman & Naon, 2004; Ghesquiere & Laurjssen, 1999; Meister, 1998;Vancil, 1997).
Importance of the Research The importance of the current study is in focusing the attention of the academic system on the needs of students with VI, and the use which can be made of this information in order to help these students in their academic journey. The aim is to raise awareness of how students with VI experience higher education and to improve the understanding of obstacles and barriers, but also to shed light on the strengths and inner resources that these student discover along the way and to create a model which maps positive academic and social adjustment. 2 The ‘emancipatory paradigm’ will be presented in the next chapter.
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Research Purpose
The research model will be based on ‘the visual functioning model’ of Corn (1983) and will provide a new theoretical framework for continuous research and intervention.
The study’s implications and recommendations can help professionals and support services intervene in the process of adjustment to university and help students with VI graduate successfully.
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The Research Design and Methodology
Part III - The Research Design and Methodology ________________________________________________________________ “Historically, disabled people have been the objects of study but not purveyors of the knowledge base of disability” (Snyder & Mitchell, 2006: 198)
When I was in fourth grade our class visited “The Museum of the Jewish People” in Tel Aviv. On the break we sat in the museum’s garden when a blind man with a cane entered, turned to the museum’s fence and walked along it. My teacher walked in his direction, stopped him and said “Excuse me, you’ve run into the fence, can I help you?”. The man smiled and said, “This is exactly the fence that I was looking for.” As the purpose of this study was to incorporate students’ voices and to draw the academic world the way they experience it, dignity and individual autonomy were two values that underpinned it. I most worried about being too paternalist toward the participants (while interviewing, analyzing or interpreting the data) and therefore I let the participants lead me blindly in their world. Though I entered the field with my own experience as a student with VI and also as a coordinator for students with disabilities, I tried to “make the familiar strange, and the strange familiar" as the famous anthropologist Clifford Geertz (1973) said. In this chapter I will present the research design and methodology used in this study. The first section of this chapter discusses the reasoning in choice of methodology and the emancipatory paradigm. The second section of the chapter details the research process including student recruitment and sample, methods, procedure and reliability and internal validity. The remainder of the chapter details ethical considerations and methodological reflections.
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The Research Design and Methodology
1. Doing Disability Research - The Choice of Methodology The new disability paradigm that has emerged in the last two decades, describes disability not as a medical condition or a personal tragedy of the individual, but as the product of the interaction between the individual and society. This new paradigm, known also as the sociopolitical or social model of disability, also affects the types of questions that are being asked by researchers and the way in which answers to those questions are analyzed (O’Day & Killen, 2002).
Qualitative methods are frequently used while researching the lived experience of people with disabilities because of their ability to examine the complexities of disability in social context. This method of inquiry examines phenomena in their natural settings and interprets them in terms of the meanings people bring to them (Denzin & Lincoln, 1998). The social model approach also promotes the adoption of a model of research named by Oliver (1992) as the ‘emancipatory paradigm’. This research paradigm draws explicitly upon people with disabilities’ collective experience and so challenges directly the widespread social oppression of this group. The original method of the current research was ‘grounded theory’ (Glaser & Strauss, 1967). As the research progressed I became familiar with the ‘emancipatory paradigm’ in the way it is defined by ‘Disability Studies’. I found out that this paradigm fits most of the principles underpinning the research and decided to add it to the research methodology.
The current research is a longitudinal qualitative study which examines the adjustment process of university students with VI during two years of their studies. The data was collected and analyzed due to the principles of ‘grounded theory’ (Glaser & Strauss, 1967) as Charmaz suggested: “Grounded theory refers both to a method of inquiry and to the product of inquiry” (2005, p. 507). This study utilized an emancipatory research paradigm.
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The principles of the emancipatory research paradigm The emancipatory research paradigm relates to the empowerment of people with disabilities. It warrants the generation and production of meaningful and accessible knowledge about the various structures that create and sustain the multiple deprivations encountered by the overwhelming majority of people with disabilities and their families. The role of the researcher is to help disabled people to remove barriers and promote their individual and collective empowerment, through the research process (Barnes, 2003). This research project attempted, wherever possible, to follow an emancipatory approach.
The principles of the emancipatory research approach are as follows (Mercer, 2002, p. 233): • Adherence to the social model of disability (i.e. the rejection of medical/personal tragedy models). A social model outlook gives prominence to researching environmental, educational and other barriers encountered by people with disabilities. The current research focuses on the experience of university students with VI in their academic journey. The academic world presents many challenges: inaccessible education environment, economic barriers, interpersonal barriers, devaluing of people with disabilities etc. All of these topics will be presented and discussed through the voices of the students who participated in the research. The research will focus on different aspects of life in terms of disability (as socially understood) rather than in terms of living with impairment per se (in terms of medicalized discourse). • Adoption of a partisan research approach (so denying researcher objectivity and neutrality) in order to facilitate the political struggles of people with disabilities. As a disabled person I recognized that it would be impossible for me to remain a detached observer in the research process. During different stages of the research (interviewing, analyzing, interpreting) I shared my own experience and the struggles I was going through while attending university. • Rejection of the traditional researcher-researched hierarchy and the adoption of an equalized set of research relationships. As I entered the field and started interviewing the participants, I found out that in order to reflect their experiences I had to let them lead me in their journey. One procedure that demonstrates the involvement of the Section 5 Page 27
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participants in the research process is the going back and forth into the field. Analysis and drafts of the categories and themes were periodically produced and circulated to an “advisory group”, four participants whose input I valued, along with requests for comments and recommendations. The current research uses the approach entitled "No longer researching about us without us" (Johnson, 2009), by which the participants in the study are involved in validating the categories and themes in order to enhance validity of the research findings. I will return to the two criteria presented above in the paragraph related to insider - outsider researcher. • Pluralism in choice of methodologies and methods. The current research uses a qualitative methodology approach. The emancipatory disability research has been identified with qualitative data collective strategies since its inception (Barnes, 2003). That is mostly because of its ability to capture the full, complex, lived experience of disabled people.
Oliver (1992: 111) details three essential principles in an emancipatory methodology ‘reciprocity, gain and empowerment’. These principles influenced the research design and process.
(i) Reciprocity The relationship between the interviewer and interviewees can never be completely equalized. In the current study three things made it even harder: first, most of the interviewees were undergraduate students while I am a doctoral student. Second, the participants knew that my past experience includes being a coordinator for students with special needs at the Open University and sometimes tried to get my advice as a learning counselor, and third, the participants knew that I also face difficulties as a student with VI and frequently asked questions that were directed toward learning from my own experience of defeating shared barriers. I did endeavor where I could to build on this relationship and make it as equalized as it could be. The sharing of experience was important, as some of the participants had felt isolated and unable to share their experiences with anyone else. Crucially, as detailed by Vernon (1997), knowing when to share my own experiences was Section 5 Page 28
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also necessary.
(ii) Gain It is clear that I would gain the most from this study as its aim was completing my Ph.D. However, I recognized that I also gained from sharing the experiences and listening to the participants’ stories and hoped that they would also gain from their participation in the research. The participants in the study had my contact details and some of them used it and shared their experiences with me, whether it was about issues that arose in the interviews or other topics outside of the research. Some of the students who participated in the study mentioned that it was a therapeutic experience for them and that they looked forward to our next meetings. Another thing that must be mentioned is that none of the participants dropped out of university during the research period. This is not a representative characteristic of the population of university students with VI and must be taken into consideration when analyzing the results. One of the aims of the study was to raise awareness of how students with VI experience higher education and to improve the understanding of obstacles and barriers, but also to shed light on the strengths and inner resources that these students discover along the way and to create a model which maps academic and social adjustment that leads to success. As mentioned before, the study’s implications and recommendations can help professionals and support services intervene in the process of adjustment to university and help students with VI graduate successfully. Ultimately, through the dissemination of the research findings I hope that greater inclusion and equality will be achieved for students with VI. (iii) Empowerment The imbalance in power between people with disabilities and non-disabled people is wellknown. People with disabilities have been discriminated against throughout the years in many aspects of living. Vernon (1997) claims that the decision to carry out a research study and make the experiences of a minority oppressed group known, is in itself, a form of selfempowerment and the fact that several of the participants who took part in the study provided Section 5 Page 29
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the researcher with other contacts to interview, as in the current research, “is also evidence of the same self-empowerment” (p.172). In addition, Vernon claims that treating participants as equals help them increase their self-confidence and self-esteem. Moreover, the sharing of experiences can literally prove empowering for the participants involved (Vernon, 1997). Oliver (1992) suggests that empowerment is not something that can be given to people, it is something that people must do for themselves. According to his point of view, researchers should ask whether their work is contributing to this process. This research will not only investigate the lived experiences of university students with VI but will make recommendations for practical applications that produce conclusive outcomes wherever possible. The implications will be presented not only to support services in higher education institutes, but also to the participants and to the community of people with VI. Insider - outsider research When I met Moran, one of the participants in the study, for the first time, she asked me “Why are you researching students with VI? Are you visually impaired yourself? ” I answered that I see only in my left eye, then she nodded and asked, “So do you have a driving license?” and I answered, “Well, yes”. Then she summed up the discussion with, “So you’re not really visually impaired”.
The question about my identity as a researcher and a person with VI arose in all of the interviews during the research, and reflects the unique interaction that researchers and participants in a qualitative research study have to cope with. The insider knowledge of the researcher gives rise to shared understandings, and creates empathy and a ‘common’ language with participants. Today, my visual impairment is moderate compared to the visual impairments of the participants in the study. When I was a baby doctors diagnosed my right eye as lazy, which demanded severe treatment: my left eye was covered with a band-aid in order to force the optic nerve to develop so that the lazy eye would develop its visual ability. It was only when I was four that the doctors realized they were wrong and that my allegedly lazy right eye was actually fine and its blindness was a result of brain damage. My optic nerve was actually undeveloped and congenitally damaged for unknown reasons, and this of Section 5 Page 30
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course could not be fixed. Finally the band-aid was removed and I could see the world with my left eye. My eye condition also resulted in a squint, which could be easily seen. Though I do not have a lot of memories from this time period, I am convinced that it influenced my whole being, as my first meeting point with the world, and all of my initial experiences, were taken from a blind position. I do not have a blind certificate, but even so I grew up with the feeling of being an outsider and experienced difficulties functioning as a student in university. Yet, my experience provided insight into the research that other sighted researchers may find hard to achieve, as Barnes (2003: 6) stressed the point that, “Emancipatory disability research is not about biology, it is about commitment and researchers putting their knowledge and skills at the disposal of disabled people”. It was important to me that the participants would feel that I had an understanding of the experiences they discussed. We might not have gone through the same difficulties but I shared the experiences of being disabled. Jenks, (2005) inspired by the work of Charmaz, (1991) explains the importance of letting your research participants know that you are both members of the same group. This is especially important when researching issues like disability or illness since people who share these experiences may feel at risk when disclosing their personal experiences and revealing their “feeling and vulnerabilities” (Charmaz, 1991: 108-109). As Jenks claims, sharing the fact that I too have visual impairment “lessens this risk of disclosure” (Jenks, 2005: 150). “The written word is a technology developed by and for the sighted, through which the blind are spoken about but rarely to” (White, 2003: 133). During the literature review I found it almost impossible to find essays which focus on higher education and were written by blind people. It is clear to me that a blind person might know more about his or her own ways of adjusting to university than any educationalist or rehabilitation counselor. I acknowledge that my own position as the outsider- insider author of this written essay is problematic. As an insider I may be criticized for being too close to the research process, and as an outsider I might be blamed for not being able to reflect the experience of the participants in a valid way. There is no perfect solution to this dilemma. As Banks (1999) explained, there are benefits and drawbacks from each research position.
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2. The Research Process Student recruitment and sample Participants were selected in three different ways: 1.
Via support services - support services have a pool of students with VI who have registered in order to get academic support and accommodations. The support service coordinator at two universities asked the students' permission to give their contact information to the researcher.
2.
Virtual community – a preliminary e-mail that outlined the purpose of the research and what the participants’ involvement would entail was published in a virtual community managed by the service for the blind (Appendix 1).
3.
Prior acquaintanceship of the researcher and friends of participants.
Sixteen university students and graduates, defined as legally blind, agreed to participate in the study. Eight of the students were completely blind (five of them from birth) and the other seven were visually impaired. Ten of the participants were studying for their B.A., five toward a Master's degree and one graduated with his B.A. Of the sixteen students who participated in the study, ten were women. Students ranged in age between 20 and 35. The following table provides demographic information of each participant in the research. Names presented here are pseudonyms, rather than participants’ real names, to ensure anonymity.
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Academic and Social Adjustment of University Students with VI
Table 1: List of the participants
Participant
Gender Degree University
Impairment ( onset age)
Year of studying when research began
Adva
F
B.A.
1
Blind (birth)
5 (last year)
Ayelet
F
B.A.
1
VI (27)
4 (last year)
Racheli
F
M.A.
1
Blind (13)
2 (last year)
Hezi
M
B.A.
1
VI (birth)
4 (last year)
Eithan
M
M.A.
2
VI (birth)
2 (last year)
Shlomit
F
B.A.
1
Blind (5)
2
Nadav Maya Moran Dana Tal Jonathan
M F F F F M
M.A. B.A. B.A. B.A. B.A. B.A.
1 3 3 3 3 3
Blind (31) Blind (birth) VI (birth) Blind (birth) VI (birth) VI (birth)
1 1 1 1 2 1
Orly
F
M.A.
4
Blind (birth)
2
Dvir
M
B.A.
4
VI (birth)
3 (last year)
Kelly
F
B.A.
4
VI (birth)
5 (last year)
Ziv
M
B.A.
4
Blind (birth)
Graduate
Faculty
Social Sciences and arts Social Sciences Law Social Sciences Social Sciences Social Sciences Social Work Humanities Social Work Humanities Humanities Social Science Social Sciences Social Sciences Social Sciences
Methods Interviews One of the most important sources of information in a qualitative research study is interviews. In a case study, interviews are conducted as guided conversation (Yin, 2003). The type of the interview that was used in the current study is a semi-structured, in-depth Section 5 Page 33
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interview. The goal of in-depth interviews is not to get answers or to examine hypotheses but to understand the lived experience of other people and the meaning they give to this experience (Seidman, 1991).
The semi-structured interview addresses questions that are directed to a specific purpose. The interviewer presents short questions in a certain order, and the interviewee answers in detail (Spradley, 1980). Notwithstanding, this method enables freedom to represent questions and topics that were unexpected (Ellen, 1984). Data collection in the current research was conducted through in-depth, semi-structured interviews, which allowed the participants to express the meanings they ascribe to the behavior, feelings, thoughts and perceptions that they and others hold, in their own language and concepts. All interviews were audio recorded, except for two.
First Interview The first interview included four parts: 1.
Explanation about the research purpose and design. The participants were fully informed that they had choices in the research process. At the beginning of each interview students received information describing their rights as participants in a verbal format.
2.
Personal Details questionnaire - including socio-demographic details, description of the impairment (age of onset, visual abilities etc.), educational background etc. The Personal Details questionnaire can be found in Appendix 2.
3.
The interview - participants were asked to describe their lives as university students with VI. Interviews explored choosing university and faculty; learning experiences; contact with tutors and lecturers; use of assistive technologies; contact with readers; orientation and mobility issues; accommodations; friendships and social interactions; perceptions of failure and success.
4.
The end of the interview included four questions regarding failure and success in university. This part repeated also in interviews two and three. The questions that were presented are: Section 5 Page 34
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1. Do you think you are a successful student? 2. What (in your opinion) is success in university? 3. What (in your opinion) is failure in university? 4. Describe yourself briefly (in a few sentences) as you see yourself today at this point in your life.
The interview structure was flexible and dynamic. My point of view was to let the participants share their story in the way they wanted to do it. I tried not to interfere or give clear directions (for example: where the story starts, what is important and what is not) in order to allow participants to bring their personal narrative of being a student with VI. After the participants finished telling their story I went through the interview guide checking that all the topics that are mentioned there were discussed. The interview guide can be found in Appendix 3.
Second and third interview The second and the third interviews were conducted in the same way as the third and fourth parts of the first interview.
.
Fourth Interview The only interview that was conducted differently was the fourth interview (Appendix 4). This interview included a list of ten questions regarding the themes that were analyzed from previous interviews. This interview’s purpose was to validate the researcher’s findings until that phase of the research. The questions concerned a meta-cognitive analysis and introspection on the different periods of studying in university, screening of the support the students used, learning skills that were acquired etc. One of the tasks of that interview was to give a title or to create a “visiting card” for each year in university (Kacen, 2002; Lieblich, Tuval-Mashiach & Zilber, 1998).
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Interview techniques - Verbalizing the lost visual information While interviewing sighted people, many visual cues are used by the interviewer unconsciously: facial expressions, smiles, nodding and other visual gestures. When interviewing a person with visual impairment or blindness, the interviewer must pay attention to the fact that people with VI do not have access to non-verbal communication and thus rely mostly on the verbal communication (French, 1999). Due to the loss of visual information, the interviewer has to find other techniques to fill this gap, and should always keep in mind that the person next to him is unable to detect nuances of body language and reflect them in communication. Using such “verbal gestures” (for example: humming) which replace the lost visual information sometimes felt strange and unnatural for me. It can also look a bit weird in the transcription, when the interviewer is too interfering and prevents the interviewee from talking fluently. Such “verbal gestures” are crucial to the interviewee experience - they reflect the empathy and the attention of the interviewer and make the interviewee feel comfortable, wanted and encouraged to talk. One of the participants in the research emphasized the importance of these “verbal gestures”: “For a blind person, talking to someone who doesn’t react may feel like throwing words into the room. We can’t see by the look in your eyes how attentive you are, unless you verbalize it. A blind person just can’t see, and humming for example makes it clear that his words are absorbed” (Eithan).
The interviewer - interviewee interaction while interviewing a blind person should be transferred from the visual channel into the auditory channel in order to make the interview accessible.
Procedure Students were contacted via telephone and e-mail, and were given general information about the study. The author conducted all interviews. Most of the interviews were conducted on campus, two interviews were conducted in students’ houses during the semester break, and Section 5 Page 36
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one was conducted in the dorms. The interviews lasted from 90 minutes to 3 hours. For all interviews, steps were taken to create a comfortable and accepting atmosphere. Thirty-three interviews were recorded and transcribed. The other two were typed during the interview at the student’s request.
“Leading” - On the way to the interview When meeting participants with visual impairment or blindness the situation of the interview is different than when meeting sighted participants. Many of the students I met, who are blind, met me at a certain point on the campus and we walked together to another location. This anagage (arm in arm), walking together, is the first time when lines we are used to as sighted people, are crossed. Most of the blind students asked me after a short introduction to hold their hand and lead them to the interview location. By doing this they could save themselves the inconvenience of taking out their cane, which can be distracting when walking together. Although many of the times they were giving the directions (where to turn, what to look for) I was responsible for their safety, for keeping them from bumping into something on our way but above all I was holding their hand, which is a rather unusual situation of getting into someone’s personal space, on the basis of such a short relationship. This experience of being led by another person, holding hands and walking together is not unusual for blind people, and happens frequently in their life. Moreover, it played an important role in creating intimacy and reducing anxiety in the interview situation. Some blind participants referred to this close “touchy” experience as part of their small talk. Being close to the other person compensates in some way for the visual information that is lost in their interactions. By holding the other person’s hand and getting into her personal space one can also hear and smell the other person more clearly. For me, this experience, which includes physical touch but also responsibility, is different from other experiences regarding interviews in a qualitative research study. One of the things I most worried about was being too paternalist toward participants. I was always worried about giving too many verbal instructions and physical hints about location and orientation. For example - when entering a room, should I just say “your chair is in this direction” or Section 5 Page 37
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should I actually put the participant’s hand on the chair? It is almost impossible to give a good answer to this question, especially when I am not familiar with the participant’s functioning level. The decision I made was to ask participants in an honest way how much help they needed and what kind of instructions would be helpful for them. While it will not be discussed here, paternalism is a central issue in the current research.
Physical closeness Many of the students I interviewed sat really close to me, at a distance which also reduced my personal space to almost nothing. During the interview some of them repeatedly touched the table, held my recorder and sometimes accidentally touched my hands. When I observed meetings of two students with visual impairment and blindness I noticed that they stood really close to each other - almost at “kissing distance”. French (1999) claims that the ‘rules’ of social discourse are changed in meetings of people with VI.
Physical closeness is sometimes necessary for creating intimacy when one side (or both sides) is blind. This closeness, which allows intimacy, occurs in the interview situation by sitting close to each other, but also reflects my perception of the research and the research aims. 3. Data Analysis Each interview was recorded to allow for transcription and analysis of the data. Data constituted of over 650 single - spaced pages of text comprised of transcripts and analytic memos. The author analyzed the interview data according to themes (content analysis). Analysis concentrated on theoretical and practical concepts emerging from the data and the literature review.
Researchers in the qualitative paradigm acknowledge that the researcher is one of the instruments of research (Brantlinger, Jimenez, Klingner, Pugach & Richardson, 2005; Section 5 Page 38
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Lincoln & Guba, 1985; Patton, 2002), and thus plays a key role in how data are collected, analyzed and interpreted. The depth of study offered by a qualitative design strengthened the present investigation of the academic and social adjustment of university students with VI, as compared to previous designs that only utilized a quantitative approach.
Content analysis of the data created a ‘grounded theory’ which provides an overview of the academic and social adjustment process of students with VI and explains its characteristics in a meaningful way. ‘Grounded theory’ is a data analysis approach in which the researcher creates a theory according to the data collected in the field, examines it and verifies it again with the researched reality. The theory is constructed through a systematic process of going back and forth into the field in order to collect a lot of data, until the construction of a meaningful and rich theory has been accomplished (Shkedi, 2003). ‘Grounded theory’ suits the study of educational processes which includes events, activities, actions and interactions that occur over time (Creswell, 2008). The starting point of a ‘grounded theory’ is that human behavior includes repeated patterns which can be discovered only by entering the research site with an open and general research question and researching its structures and context in a structured and systematic way. This approach includes the discovery of a ‘core category’ which explains the researched phenomena as whole. This explanation will be acknowledged by the participants themselves, as well as the scientific community, and will enable generalization (Gibton, 2001). The analysis process of the current research began in an early stage of the research. Since it is a longitudinal study over two years, each period of interviews ended with reading the research material that was collected until that time. That reading included interview transcriptions, analytic memos and field notes in order to find repetitions in it. The analysis process referred both to emic and etic categories (Strauss & Corbin, 1990): Etic categories - are external categories, derived from the researcher’s perspective. Their origin is the literature theoretical review, studies, documents and models of other researchers, and the researcher’s personal experience. In the current research the main etic categories were academic adjustment and social adjustment and their subcategories, as presented in the first Section 5 Page 39
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chapter. From the first interview it was clear to me that these categories do not fit the experience of the participants, because participants described their adjustment process as a holistic experience, combining social and academic process in a way that cannot be separate. Emic categories - are internal categories, built from the findings of the study. A deductive analysis begins with a holistic reading of the interviews with an awareness of the interaction between the conceptual perspective of the researcher and the data emerging from interviews. While reading there is an attempt to identify the category constructed from theoretical review (etic). After three periods of interviews, I had a list of categories and themes that emerged from the data till that phase. The fourth interview guide was constructed according to these categories, and its purpose was to validate the findings with participants. After the fourth period of interviews ended I understood that the research had reached it saturation point - that point occurs when “gathering fresh data no longer sparks new theoretical insights, nor reveals new properties of your core theoretical categories” (Charmaz, 2006: 113).
Data analysis also referred to three underpinning principles of the analysis perspective linear timeline, affirmative perspective and referring concepts as a continua. 1. Linear time line - The current research is a longitudinal study. Students were interviewed during two years of their studies. Each year of university brings its own challenges, tools and demands which generate different coping strategies. Participants in the current study were going through a maturation phase, which can be identified both through comparing the various interview with each participant, and also through comparing interviews of students in different years or studying for different degrees (undergraduate and graduate). The linear timeline axis compares interview data both between and within participants. 2. Affirmative perspective- This second axis was not planned but was generated by the research findings. From the literature review it seems that a relative lack of attention to more positive adjustment processes has persisted until recent years. Stanton and Revenson (2007) present in their model regarding adjustment to chronic disease, a number of reasons for evaluating positive adjustment. These reasons can be applied to the adjustment process of Section 5 Page 40
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university students with VI, and are consistent with the social model of disability. Swain and French (2000) present the affirmative model of disability which is an extension to the social model. This new model emphasizes the non tragic view of disability and encompasses positive social identities, both individual and collective, for disabled people. In their view, disabled people are not identified only by dealing with an impairment and being disabled by the environment but also have a positive personal and collective identity. This positive perspective was revealed to me while finishing the first period of interviews. This axis will be expanded upon in the results and discussion. 3. Continua instead of dichotomous concepts - this underpinning principle which guided the analysis present disability related issues as a continuum in which the two ends of the line do not encompass all the possibilities that exist. This will relate to concepts such as sight and blindness, independence and dependence, ability and disability, inclusion and exclusion etc. The analysis process of the data gathered included the following stages: 1. Initial coding / open coding - separating and sorting data segments and combining them in a new and different way. The open coding process is done by comparing the different parts of the data to find similarities, differences and connections between them. By doing this the researcher creates the initial categories and gives them names. Categories are instruments that detect meanings in the text. Finding meaning through categorization is actually the beginning of the process of interpretation. The categories that were found in that stage guided the process of ‘theoretical sampling’ in which the researcher seeks statements, events or cases that will illuminate the categories. This can direct the researcher to add new participants to the research (Charmaz, 2006), as happened in the current research. For example: During the first period of interviews I interviewed two participants who have a guide dog. From the analysis of their interviews it occurred to me that use of a guide dog has a crucial influence on functioning in university, and thus I created a category called “Guide dog influence on adjustment”. This category did not show up in the literature review, nor in my own knowledge and experience. In order to shed light on and understand this category profoundly, I asked the “Israeli Guide Dog Section 5 Page 41
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Center” to help me find more participants who are university students and use guide dogs. 2. Axial coding - The second level coding procedure involves recognizing relationships between categories. This stage is characterized by mapping and recognizing main categories and subcategories and exploring the relationships between them (Creswell, 2008). In that stage the categories that were identified at the initial coding stage were divided into new categories. Due to this process the number of categories was reduced. For example: many participants discussed experiences in which they faced barriers in the university environment. At the first stage each experience was named and categorized according to its location - while taking exams, reading learning materials, searching the library etc. At this stage this subcategories were grouped into the category “University as a disabling environment”. The categories will be presented and discussed at the research findings chapter and will include quotes from the interviews as examples of and evidence for this stage. 3. Selective coding - In this stage the theory is being developed. A story that connects the categories is constructed. 4. Creating the ‘core category’- At this stage the researcher focuses the data into one central category which is called the ‘core category’ (Glazer & Strauss, 1967). During the analysis I discovered that one of the main issues participants discussed was the comparison between them and the sighted society. Participants used two different narratives in their attempt to solve this equation. The core category will be presented and discussed in the research findings chapter. 5. Creating the theoretical framework / constructing the theory - conditional matrix.
4. Trustworthiness of the Study In qualitative research, traditional methods for assessing reliability and validity that depend on the stability of methods across situations and persons are inappropriate and inapplicable (Katz & Mishler, 2003). That is the reason for using alternative methods that emphasize internal criteria, such as the ways different pieces of data fit together, and the plausibility and Section 5 Page 42
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trustworthiness of a coherent interpretation (Lincoln and Guba, 1985; Mishler, 1990). The next chapter will address the ways that were utilized to create dependability (reliability), credibility (internal validity) and transferability (external validity) in the current study. Dependability Reliability relates to the credibility and authenticity of the research tools we use - in what measure the same repeated test will product the same results, and whether the tools we used are proper and not deceptive. If research reliability exists then other researchers can get the same results by doing the same procedures (Shlesky & Alpert, 2007). Notwithstanding, we must remember that the phenomena that are being researched in qualitative research are unique because of their social characteristics, and do not repeat in the same way. Moreover, it is important to remember that a qualitative researcher is one of the main instruments of the research tools and brings to the research his or her own perceptions and former knowledge (LeCompte & Preissle, 1994). As there are no two identical social events, there are no two identical researchers. Yin (1994) argued that in order to create dependability you must accurately record all the research procedures and keep a field diary which includes a precise protocol of the different phases that were executed. The only way to create dependability is to describe accurately the research process in order that other researchers will be able to repeat it. Shkedi (2003) suggests three conditions that establish dependability: 1. Creating a data base - this will allow other researchers to go back and check the information sources of the study. 2. Document analysis preservation - preservation of all documents including protocols and drawings, categories of analysis and their content. 3. Presenting a chain of evidence in the final report - presenting quotes relating to relevant issues, circumstances in which the evidence was gathered and the relationship between data collection and the research questions. In the current research the data collection and analysis procedures were documented Section 5 Page 43
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accurately throughout the two years of the research, as described above (in the procedure and data analysis subchapters) and will be described in the following chapters.
Credibility Credibility relates to the question to what extent the researcher can discover and describe the truth of the participants. Examination of credibility in the current study was done in several ways: 1. Triangulation - a ‘within-method’ triangulation (Denzin, 1978: 301) which uses multiple techniques within a given method to collect and interpret data. ‘Within-method’ triangulation essentially involves cross-checking for internal consistency and was utilized in the current study by conducting interviews with the same participants at different times, repeating the same questions in different ways and interviews, and by interviewing people who went or were going through the same process at different stages. 2. Writing the final report as ‘thick description’ (Geertz, 1973) - a multitude of details that allow the production of meanings and understanding phenomena. The research report includes information about context, appropriate quotes and detailed discussion of concepts. 3. Duration of the study – a longer study elicits stronger credibility. As the researcher spends more time in the field, she will be influencing events in the field to a lesser degree, and will be able to deepen the understanding of the environment and free to develop a personal relationship with the environment. Data collection in the current study lasted for two years. 4. Reflection and self-criticism by the researcher - during the analysis, previous assumptions, expectations and values were examined repeatedly. Since the current researcher is both a person with visual impairment and a former coordinator for students with disabilities, reflections of personal and professional biases were important to determine their potential influence on the research process. 5. Member checking - an external validation by the participants was made in order to raise the credibility of the study. This process of ‘member-checking’ (Creswell, 1998; Lincoln & Guba, 1985) involves the researcher allowing participants to verify and clarify the researcher’s interpretation to the story. Section 5 Page 44
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6. Lincoln & Guba (2000) described ways to add to a study’s ontological and educational authenticity. That is, the study's ability to raise social awareness of the participants and those who are in contact with them and increase their ability to be involved in moral criticism. This study aims to raise awareness of student with VI and focus counseling and support services in understanding the strengths and weaknesses of this population. In addition to the methods described above, ‘grounded theory’ (Glaser & Strauss, 1967) is another way to strengthen credibility. While constructing ‘grounded theory’ the researcher builds a theory based on data collected in the field, examines and verifies it again with the researched reality. The theory is constructed through the process of working in the field and returning to it to collect more data until a rich and meaningful theory (Shkedi, 2003). During the process of constructing ‘grounded theory’ pieces of information and evidence are collected simultaneously in a circuit process (Charmaz, 2006; Yosefun, 2001).
Transferability Transferability (Lincoln & Guba, 1982) refers to our ability to generalize the research findings to other contexts. This more interpretive process of generalizing findings, which are heavily dependence on context, is different from traditional scientific generalizations (Melrose, 2009). The meaning of transferability is the theoretical contribution of the research. This contribution will be detailed in the discussion and the conclusions sections.
5. Ethical Considerations and Methodological Issues The next chapter will address ethical considerations and methodological issues arising from the study. In this subchapter I tried to create a picture of my experience as a researcher who is dealing with specific issues arising from the characteristics of a certain population. My dilemmas regarding methodological and ethical issues continue and writing about them is part of the solution. First, I will discuss ways to insure the anonymity of the participants.
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Insuring anonymity The community of blind and visually impaired people in Israel is very small. In 2006/2007, the number of legally blind people between the ages 19 - 40 was 2,506; of them only 369 were university students (in all higher education institutions and for all degrees) (The Knesset Research Institute, 2006). Since it is such a small community that receives services from a limited number of public institutions, almost everyone knows everyone. Moreover, most of the participants in the research knew each other (they had learned together in an inclusive class, joined the same youth movement at high school, spent time together at summer camps for youth with VI or met each other at the support services office in university). Most of the participants also knew that their friends had been participating in the study.
It became clear to me that participants were sharing their experiences from interviews when in the second period of the interviews I scheduled three interviews at a certain university on the same day. On the break, I accidentally met another participant with whom I did not schedule an interview for that day. When I met her she said “Yes, my friends told me that you are coming here today and I was surprised that you didn’t call me to schedule a meeting, I was really looking forward to it”. That meeting also taught me the importance of participating in the research as the students experienced it. In many cases during the interviews, participants talked about their friends implicitly or explicitly, whether or not they knew that I also knew them or that they were also participating in the research.
Another issue resulting from the small size of the VI community in Israel is the fact that not only do participants know each other, but also service providers for this community knew that I was conducting a research study on their clients, and were curious about the research data and findings. This also related to my past acquaintanceship with support services due to my work at the Open University. The participants in the study knew that I am familiar with the staff working at the “Learning Center for the Blind” and other support services, and thus Section 5 Page 46
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sometimes hesitated to talk freely about their problems. Many times I felt like I was being tested by participants as to whose side I was on. For example, field note from June, 2009: “While interviewing Jonathan he asked me to stop the recorder and then wanted to know how detailed he should be when describing his interactions with the “Learning Center for the Blind”, should he mention names etc. I explained that this is not the main purpose of the research, but it was important that he talk openly about his experience. I also mentioned that all of the data were being kept confidentially by me and would be presented in a way that would preserve his anonymity.” The consequences mentioned above made the task of insuring the participants’ anonymity especially important. In order to do this, the following steps were taken: 1. Using pseudonyms for participants and also for guide dogs. 2. Presenting the list of participants with only a few details. 3. Omitting other identifying details - university’s name, department of study etc. This decision was very hard to make since acceptance to certain departments in university is important information, related to the students’ academic abilities and achievements. 4. Presenting the analysis only between participants (and not within participants) - since the study had been tracing students over two years, there was a lot of data regarding each student and his/her own academic journey. In spite of that, I figured out that presenting each participant’s whole story would enable participants’ identification. My decision was to mix the participants’ stories in the final analysis. 5. Writing in English - all the interviews were conducted in Hebrew. Only the relevant quotes were translated into English. This formation also blurs the participants’ identity. Most of the community of VI (persons with VI themselves and rehabilitation providers) do not read literature in English.
Reflectivity and the role of the researcher As a person with VI the purpose of the research and the position of the researcher were especially important to me. As I wrote the research proposal I recognized that it would be difficult for me to remain an objective observer in the research process, as I too have Section 5 Page 47
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experienced difficulties and conflicts and bring these experiences to the research. I recognized that reflexivity and the constant monitoring of pre-existing values and experiences at each stage of the research would be important personal steps in ensuring the validity of this research project.
As I started conducting interviews for the research I joined a critical reflexive group at the ‘Israeli Center for Qualitative Methods in Ben Gurion University of the Negev’, which helped me in processing and understanding this complicated experience. The group, which gathers young scholars, had been meeting for the last two years of the current study on a regular basis to reflect together on participants’ ongoing research. This reflection group became an important space to challenge the division between the research and the private and social spheres. It also became a space to explore our different selves and to develop our abilities to listen, to look and to think critically. Furthermore, the group had an important role in empowering its members to find our way in the academic world as qualitative researchers who hold political agendas, aim for social change and/or think and act outside the mainstream.
Ethics of observations: using Sighted Society codes when researching persons with VI Observations are a well accepted form of qualitative data collection, but when it comes to researching persons with VI an ethical question arises. If the research purpose is to describe the reality of people with VI as they experience it, using observations is problematic. If the researcher wishes to discuss or report to a participant on information collected through observations a gap is opened between the researcher and the participant, with a possible unfair advantage for the researcher. The current research deals with academic and social adjustment. Functioning level is one of the factors that influences the process of adjustment. When meeting the students and walking together to the interview location I asked myself if it is ethical to use visual data, such as: • Orientation and mobility - the way the student walks, navigates his way, reacts to people along the way and how much help he needs in orientation and mobility? Section 5 Page 48
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• Variables regarding apparel/ looks - What is she wearing ? Does it fit (color-wise)? Are her clothes clean or do they have food spots? High heels for women? Make up? This kind of data is frequently used by rehabilitation counselors when they come to evaluate a person’s functioning level. But in a qualitative research study an ethical question must be asked when using data which is excluded from the participant’s experience. Is it right to use visual information/ data that is not accessible for the participants? Using this kind of information will always be biased by my perceptions as a sighted person.
The reasons described above are the reason for my choice not to use observations in the current research and to use only verbal data. Use of verbal data is “particularly helpful for counseling psychology research, which inquires about the experiential life of the people it serves” (Polkinghorne, 2005). The current research is not in counseling psychology, but certainly should serve the population of university students with visual impairment and blindness.
Making observations with eyes closed One of the experiences which was most powerful for me during the research was an observation in the ‘Israeli Guide Dog Center’. The man who led me in this observation is one of the managers of the center, and he is blind. He suggested making the observation with eyes closed (using an eye cover), letting him lead. During the observation he gave me the directions and at some points asked me to take off the eye cover. This experience of being led by another person, blindly, stressed the differences between the experience of seeing and not seeing. At the same time it also demonstrated that seeing and blindness are continuous and not dichotomous concepts. (For example when I entered a room I switched on the lights out of habit, and then found out that the light has an effect - though I wasn’t able to see anything). I am not saying that by making observation with eyes closed you can understand the meaning of blindness, but by doing this I learned a very important lesson about perspective and about understanding the point of view of the participants in my research. Section 5 Page 49
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Visual concepts - Use of sighted society codes by persons with VI Another question regarding analyzing discourse of persons with VI reveals a mirror image to the last topic presented above. Everyday language includes many visual terms and concepts, like “watch”, “look” or “stare”. People with VI also use these terms in their language, but it is important to understand them in the way the speaker means. Two possible options are: 1. Ask the participant what he meant to say using that phrase. 2. Analyze the way in which persons with visual impairment use visual terms - content analysis. Some examples: •
Seeing = understanding “I tried to speak with the lecturer and I saw that it doesn’t work, there was no way he would agree” (Maya)
• Seeing = meeting “Let’s say that for the last four years I haven’t seen him, and I really miss him” (Orly) • Looking = referring/ paying attention to “I didn’t look at his disability, even today we are in some kind of relationship” (Orly) • Seeing = experiencing “In grade 12 I went and got some matriculation exam material in university and kind of saw how it is” (Adva)
It was interesting to analyze the different ways participants adopt “sighted concepts” into their language. Though the meanings of these concepts are different between sighted people and blind people the use of these concepts is quite similar. 6. Summary It seems that there is no right way to conduct a “blind study”, but if the research aim is to describe the world as people with visual impairment and blindness experience it (the academic world or any other) the researcher will have to be creative and think carefully about visual concepts and information that are not accessible to the participants. Section 5 Page 50
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Research Findings and Discussion
Part IV - Research Findings and Discussion ________________________________________________________________ “Disability identity is about stories, having the space to tell them, and an audience which will listen. It is also about recognizing differences, and isolating the significant attributes and experiences which constitute disability. Some we might choose to change, others to recuperate or celebrate.” (Shakespeare, 1996:111)
The current study examined the ways in which university students with visual impairment experience their academic and social adjustment to university. Specifically, three questions guided this research: 1.
How do individual student characteristics shape the nature of their academic journey?
2.
How do environmental factors impact on the experience of university students with VI?
3.
How do disability and impairment effects impact on the experience of university students with VI?
Results of data collection (35 semi-structured, in depth interviews and 7 telephone interviews) are reported in this section. Data will be presented in the form of tables, diagrams and quotes made by specific participants. The quotes used to support each theme were selected based on the specificity of information provided. The researcher made a careful attempt to include quotes from a variety of participants.
Findings will be presented in two sections: 1. One set of themes that emerged from the data and represent the experience of all participants. These themes do not refer to a specific point in time, or to a specific participant. 2. A second set of themes that emerged according to a linear timeline analysis.
Though academic and social adjustment are discussed separately in the literature review, these two processes interact all along the way. All participants in the current study described Section 6 Page 51
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their experiences regarding social and academic processes jointly, while emphasizing the effect of social interaction on academic success. Accordingly, the themes that will be presented in this section will deal with both academic and social issues and will present students’ experience as a whole. A central finding is that adjustment is a multifaceted and dynamic process.
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Research Findings and Discussion
1. Themes that Emerged from the Data and Represent the Experience of all Participants This subchapter will present themes that were shared by the majority of participants in the study. Many of these themes present dilemmas and dualities that the participants faced during their studies. It was very difficult to split the data into themes since all of them interact with each other. It is well known that grounded theory categories are related to one another (Strauss & Corbin, 1990); therefore the division of the data into themes seemed sometime artificial, as if I were trying to impose the methodological analysis on the data. I faced dilemmas and queries that can be summarized by the question “is this the right way of doing it?” Finally, with the notion that the whole is greater than the sum of its parts, I decided to present the themes in a manner that reflects the participants’ voices in the most faithful way, and only then combining them with the theories and the concepts from the literature. The order in which the themes are displayed was determined according to the order in which they were discovered during the research period.
Seven distinct themes emerged from the data. The first presents the duality between being a student and being a person with VI. The second relates to environmental barriers in the academic world and thus demonstrates practical difficulties that students with VI experience during studying at university. The third describes the tension between independence and dependence, a very common issue when talking about people with disabilities. The fourth relates to impairment effects (Thomas, 1999) and their interactions and effects on the experience of the research participants. The fifth presents different ways to create social interactions and its importance for students with VI. The sixth describe the process of self disclosure, and the last theme describes internal and external forces that helped students with VI along their academic journey. Interactions between the themes will also be presented and discussed.
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Theme 1: “Everyone is regular and everyone has a disability” - Between Normalizing Disability and Disabling Normalcy ___________________________________________________________________________ “The concept of disability is a function of normalcy. Normalcy and disability are part of the same system.” (Davis, 1995: 2)
When I called Tal, one of the participants in the study, to schedule a meeting, she said “Why are you researching students with VI? We are just like any other students.” After a short conversation I convinced her to meet me anyway in order to discuss the meaning of being a student with VI. I stressed that the research intent was not to look for the differences between sighted students and students with VI, but to incorporate students’ voices, which might also show the similarities between these two populations. The question that Tal asked me in that phone call is one of the questions that students with VI deal with every day. It is a question of identity. All of the participants in the current study discussed similarities and differences between them and the sighted students. During the interviews, students mentioned in many different ways that they are just like everyone else and that the others are just like them. Everyone has some kind of disability and has some level of dependence on others, whether they are blind or not. It seems that the students are aware of the perceptions that society holds toward disabled people, and try to fight them. Davis (2006a) claims that every aspect of our life includes some idea of a norm, mean or average that can be calculated (school tests, weight, salary, intelligence etc.), and that people have an “inherent desire to compare themselves to others” (p. 3). Participants in the current study adopted this point of view about normalcy and were very busy with locating themselves, but also others, on a continuum between disability and normalcy. The participants discussed two different narratives which located them on this continuum. The first, which was more common, is by emphasizing that they can do everything, just like sighted students. The second is by making the sighted society into a disabled society in one way or another. It seems that by using these two complementary narratives participants normalize their disability or disable normalcy.
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Goffman (1963) defines ‘passing’ as a strategy for managing the stigma of ‘spoiled identities’; those treated by society through negative attitudes and opinions, oppressive policy and other discreditable conventions. During human history we have witnessed many kinds of passing in different times, such as: Jews passing as Christians or gays/ lesbians passing as heterosexuals. People with disabilities also use this strategy and pass as ablebodied, through ingenious ways which conceal their impairments (Siebers, 2004). Shakespeare (1996) also claims that people with disabilities may use the strategy of denial in order to minimize the effect of the impairment on their lives by concealing their disabled identity and by claiming to be ‘really normal’. Using the two narratives, normalizing disability and disabling normalcy, is one of the ways in which people with disabilities may try to pass, though not in its classic sense of concealing disability but through decreasing the gaps between them and able-bodied others. Siebers (2004) defines the dominant social group as ‘normative and desirable’. Through passing, people can improve their social status and increase the odds for social acceptance. These two narratives will be presented in the following sections, but will also be discussed in relation to other themes that emerged from the data. Normalizing the disability - I can do it just like everyone else Some of the students described their efforts to do things the way sighted students do. Adva for example told me about difficulties she had in a certain course in her first year due to her impairment. When I asked her why she didn’t ask for accommodations she answered that, “It doesn't look good to complain when you're a freshman." By saying this, Adva ignored totally the fact that the difficulty she experienced resulted directly from the fact that she was unable to see the learning material. Instead, she preferred to act as a sighted student, and for a first year sighted student complaining is unfavorable. In another situation someone offered to order her a taxi but she insisted on using the bus “just like everyone else.” Racheli, an M.A. student who lost her sight at the age of 13, also stresses the same idea by saying that “people do not know that we [blind people] are capable of doing everything, I say everything and I mean it.” Section 6 Page 55
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The influence of the social mechanism, which leads us to fit the criterion of being normal, is very common today in many aspects of everyday life. Many of us wish to standardize our whole being toward what Garland - Thomson calls the ‘normate’ (1997: 8), which represent the culture of the collective with its normative characteristics. While Garland -Thomson (2002) describes mostly processes of normalizing the body (reconstructive procedures, plastic surgeries etc.) and suggests that these procedures’ goal is to improve the psychological well being of the patient, I suggest that cognitive processes of normalizing other aspects of the disability (i.e. autonomy, independence functioning) are used for exactly the same goal.
Another common approach is presented here: I’m a blind student, but let’s say it’s not primary but secondary, I will not present my blindness before anything else, only ‘by the way’. I live with roommates at the dorms - you know, my life is ordinary. Sometimes the blindness makes it difficult but it’s not the central thing in life. That’s it. (Dana) Many times I try not to mention my impairment or whine about it. I always try to submit papers on time and not to postpone things, but it doesn’t work all the time because I depend on others. (Orly)
This approach is used by certain students and its main idea is driven by the “people first” language, which stresses that persons come before the disabilities/impairments, and that disability is something that comes along with people. As Nadav explains, “There is the person and then the disability... I’m a person with blindness, and I must put myself up front with my abilities but also, let people be angry at me…when you are a person with a disability people just pity you...suddenly you are just a nice guy, and one of the things is not to be just a nice guy, to have your opinions, what you think, not to take on that attitude that I'm handicapped, but to be me, a person with a disability who feels and thinks.” It seems that this narrative of ‘Normalizing the disability’ occurs in different ways of thinking and in different levels of analysis in the participants’ discourse. Eithan, an M.A. student with Section 6 Page 56
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VI, tried to explain the rationale behind this way of thinking through discussing his childhood experience of being disabled: My tryout to be a normal kid and trying to integrate works in a logic- non logic way, saying if I hide it [the impairment] I will be like everyone else, if I'm like everyone else I can fit. You have this feeling of some kind of defect that you have that you just want to hide it... my parents always allowed me to do everything, at the bicycle age I had one, everything, so what if I fall, so what, they always said so what. Judo. So I did judo, so I always wanted to integrate, to fit and this is the way to do so. Eithan was socialized into the understanding that having a disability marks you as an outsider who cannot fit the mainstream and cannot integrate. The desire to be like everyone else, to normalize the disability, is very clear from the perspective of this socialization process. This process will be discussed broadly at the end of this theme, but let me first describe the second narrative, ‘Disabling normalcy’. Disabling normalcy - Everyone has a disability The other way to look at the ambivalence of being a university student with VI is making the sighted society into a disabled society in one way or another, as Adva described it, “Everyone is regular and everyone has a disability,” or in Rachely’s words, “Everyone has their own package.” This narrative was less frequently used by participants in the current study. The reasons for this will be discussed later in that theme.
Some of the students described the difficulties they face during studying as difficulties that every student faces. Moran described her experience of getting to know people and places during the first semester of the first year as difficult due to her VI, but than regretted this and said “I couldn’t understand that all the students here felt exactly the same as I did.” On another occasion Moran participated in a group dynamics course and only after everyone disclosed their difficulties and problems did she choose to share her VI. Section 6 Page 57
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Trying to face the challenge of being disabled, some of the students claim that in some way everyone is disabled, everyone face difficulties through studying at university and other students may be occasionally dependent on others in some way. By doing this, students transform being disabled or dependent into something ordinary. Now I’m helping others, and I say: Hey, what’s wrong here? I thought I’m the one who needs help... but suddenly I saw that this student is just staring, and the other asks for summaries from the others, so I found out that it’s a part of being a student, whether you are impaired or not. (Ayelet) No one understands anything during the first semester and everyone think that the others do understand, it’s really frustrating. During the first year you just learn how to manage and it has nothing to do with you. (Eithan) Statistics is so difficult...and who is the lecturer is so important, people suffer from it no matter if you are visually impaired or not. (Moran) It seems that sometimes by thinking of others as facing the same difficulties, students found some comfort. This way of thinking is another way of reducing the gap between students with VI and sighted students, which can serve the student’s positive self perception. A critical look at this narrative exposes the fact that the boundaries between disability and able-bodiedness are very fragile. In fact “everyone is virtually disabled, both in the sense that able-bodied norms are ‘intrinsically impossible to embody’ fully and in the sense that ablebodied status is always temporary, disability being the one identity category that all people will embody if they live long enough” (McRuer, 2002; 95-96). Moreover, some disability rights activists and disability studies scholars use the phrase ‘temporarily able-bodied’, as a reminder that many people will develop disabilities at some point in their lives due to accidents, illness or aging.
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I do not claim that the participants were aware of this critical thinking, but it seems that they do understand that disability and able-bodiedness are concepts on a continuum rather than dichotomous concepts.
Compulsory able-bodiedness and the desire to be like the others By using the two narratives presented above participants in the current study manage stigma through a repeated process of sense making, while simultaneously negotiating identities both as a student and as a person with VI. McRuer (2002), inspired by Adrienne Rich's concept of ‘compulsory heterosexuality’3, coined the term ‘compulsory able-bodiedness’ as an ethos that presents the able body as an ideological norm; a sign of beauty, strength, health and power. As able-bodiedness is constructed as a norm, disability is an exception constructed to preserve it in the binary system in which the norm is defined and constructed as its opposite. Kafer (2003) claims that compulsory able-bodiedness works in two ways: through the use of physical force against people with disabilities and through what Rich calls ‘control of consciousness’. Physical violence is operated in different mechanisms, such as: abortion of fetuses who are found to have “defects” in prenatal screenings, institutionalization, social exclusion or assuming ablebodiedness unless otherwise stated. This last mechanism pushes people with invisible disabilities to pass as non-disabled and confronts them with the dilemma of identifying or avoiding their identity as people with disabilities. For people with apparent disability, compulsory able-bodiedness floods the idea of cure, since disability, satisfaction and quality of life cannot coexist. The system of compulsory able-bodiedness demands that people with disabilities give a positive answer to the ‘unspoken question’ “wouldn’t you rather be able bodied?” (Kefar, 2003). This social mechanism justifies the desire of participants in the current study to identify themselves as normal, sighted and able bodied. Disability is much more than the clinical medical definition of one’s impairment. Compulsory able-bodiedness is a tool used by the mainstream culture to silence, erase and exclude the disabled existence. Participants in this study used this tool in the same way, trying to 3. A myth denies women of their own sexuality and comfortability in exploring their bodies and those of others.
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integrate, fit and be accepted in the university environment. The use of compulsory ablebodiedness also explains why the ‘normalizing the disability’ narrative was used more frequently than the ‘disabling normalcy’ narrative. The able-bodied institution allows the continued oppression of people with disabilities. Through the construction of normalcy, people with disabilities are excluded in different ways. Thus, the strategies participants in the current study used to gain access to the university environment are a way of declaring themselves disabled but normal, exactly like the other students, or , alternatively, of claiming that others are also disabled only in different ways.
Summary This theme was found to be the ‘core category’ of the theory that emerged from the data of the current research. The ‘core category’ is the central phenomenon, through which all the other categories can be organized. This category is systematically related to the other categories and occurs both as their reason and as their result (Charmaz, 2006). The theme presented the question of constructing an identity of students with VI. Two different answers to the question, “Who am I?” were presented. Whereas the first answer is, ”I’m just like the others”, the second one is, “The others are just like me.” These two answers are two different sides of the same coin. The necessity of answering this question derives from the differences between sighted people and people with VI. As Michalko (2002; 93), who is blind, claims: We are looking at the same thing and the difference is that we are “seeing it differently. But, this difference is more radical; while we see things differently, I am wrong and they are right. The difference our difference makes is that I am different. Even though “we” claim to see differently from one another, only my difference counts as such.
Whereas using the two narratives presented above, in answering the question “who am I?”, participants in the current study were trying to reduce differences between themselves and other sighted people. While none of these answers are correct or incorrect, a different answer Section 6 Page 60
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should be suggested, a different identity should be formed.
These research findings suggest that during their academic journey students were dealing with a process of integrating their identity both as disabled and as students, choosing when and where to perform each identity, what the implications are of each choice, its cost and benefits. Giddens (1991) and Weeks (1990) are both cited in Shakespeare (1996) and present different definitions of the term identity:
Self-identity is not a distinctive trait, or even a collection of traits, possessed by the individual. It is the self as reflexively understood by the person in terms of her or his biography (Giddens, 1991: 53). A person's identity is not to be found in behavior nor - important though this is - in the reaction of others, but in the capacity to keep a particular narrative going (Giddens, 1991:54). Identity is about belonging, about what you have in common with some other people and what differentiates you from others. At its most basic, it gives you a sense of personal location, the stable core to your individuality (Weeks, 1990: 88).
This theme, as well as other themes in this section, deals with the formation of the disabled identity as experienced by the research participants. This identity changed during the research period and throughout the progress of the academic journey, and will be analyzed through different perspectives in the following sections. Orly, a congenitally blind M.A. student, shared with me an event that occurred when she wanted to submit an application in order to split her first year courses over two years, due to lack of readers and tutors: The head of my department just does not care if I have enough readers or not. In her opinion ‘you are like everybody else’. It Section 6 Page 61
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has already been said before: ‘You are like everybody else, a student like every other student, so try to be like everyone else’. Well great! I try to be like everyone else but for the record I am not like everybody else.
Though the head of the department holds the same idea as the study participants, and tries to normalize Orly’s disability, Orly claims that she is not like the others. By doing this Orly indicates that she is not like everybody due to the disabling environment she is functioning in. The next theme will present another issue which appeared through the majority of interviews - the university as a disabling environment.
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Theme 2: University as a Disabling Environment - Barriers to Learning and Obstacles Along the Way ___________________________________________________________________________ “The cause of oppression usually exists in the social or constructed environment and not in the body. Every inaccessible building is a closet representing the oppression of people with disabilities by able-bodied society.” (Siebers, 2004: 4)
The social model of disability stresses that specific problems experienced by people with disabilities result from the totality of disabling environments and cultures (Oliver, 2004). As I began analyzing the data it occurred to me that many of the practical difficulties that participants in the study experienced were due to environmental barriers and obstacles that are a direct result of an inaccessible educational environment. This environment includes inaccessible learning materials, inequality in examination conditions, inadequate understanding of the students’ needs and lack of inclusive academic environment.
This theme will present various difficulties that students experienced during their academic journey. All of these issues were mentioned by all of the participants in one way or another. These difficulties are a result of the interaction between the environment and the impairment, thus actualizing the concept of disability, and most of them are soluble problems caused by incorrect treatment from university staff, faculty and support services. First I will explore the problem of speaking and thinking about people with disabilities in Israel in general and in the higher education institutions examined in the current study in particular. Second I will present how these ways of speaking and thinking were translated to practice as experienced by the research participants. The Israeli case of people/ students with disabilities In Israel, many Hebrew terms are used when discussing “people with disabilities” (PWD’s). For some reason, and I still cannot figure whether it is just a historical consequence of wrong translation, a cultural atmosphere or a societal feature, the word “with” has been switched, in the Hebrew translation, into the word “own” (from the Hebrew linguistic root ownership). As Section 6 Page 63
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a result, PWD’s in Israel are frequently called “People who own disabilities” (אנשים בעלי )מוגבלויות, or “People who own special needs” ()אנשים בעלי צרכים מיוחדים. This lack of uniformity of the term PWD’s occurs in the disability discourse of professionals, support services and PWD’s themselves, and reflects different approaches to disability and its meaning. A brief analysis of the websites of the universities the research participants attended, and the students’ union of each university, exemplifies this disorganized and diverse discourse. Table 2: The diverse discourse - different names in which students with disabilities are being called at universities and students organizations websites University 1
University 2
University 3 University 4 Students who own disabilities Students who are University Students who own Students who own and dealing with website disabilities disabilities Students with disability disabilities A special forum for students who Students who own Students Union own disabilities Students who own -------------special needs / website was founded disabilities disabilities during the research period In accordance with this table, it seems that the Hebrew definition of people and students with disabilities in Israel is still emerging.
The language which is used to describe PWD’s is part of a process which assigns meaning to disability (Charlton, 2006). In my view, the frequent use of the word “own” in the disability discourse reflects a medical approach to disability. The medical model approach sees disability as a deficiency or abnormality which resides in the individual (Scott, Loewen, Funckes & Kroeger, 2003). This model suggests that disability can be defined in terms of physical impairments and is created due to biological aspects of the individual. Thomas (1999) suggests that disability, from this point of view, is perceived as a “property” of the individual. Section 6 Page 64
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The fact that this model is most familiar and has the longest history (Smart, 2001) might explain why its implications are so profound in the Israeli discourse. Using the phrase “people who own disabilities” transfers the responsibility for inclusion in social and constructed environments, to the individual who owns the disability, which is perceived as the deviant, the abnormal. While the medical model focuses on the impairment as individual and private, the social model of disability focuses on disability as structural and public (Shakespeare, 2006). The limitations of the medical model include not placing emphasis on social context or environmental demands. In contrast, the social model of disability suggests that disability derives from the interaction between the individual and society. Hence, the solution for disability related problems is a change in these interactions.
Mor (2009) presents two Israeli laws4 that deals with PWD’s rights. Mor claims that by using the word “special” in the language of the law, they express a view that sees legal arrangements for PWD's as a product of special treatment. This language marks PWD's as exceptional, outside of the norm boundaries, and not derivative of their perceptions of equal rights, as part of human diversity. These laws, same as the term “people who own disability”, reinforce the perception that the problem is embedded in the person, instead of a perception that sees disability as a phenomenon which is a product of social interactions.
As mentioned in the literature review, as of 2011, there is still no academic infrastructure/ foundation for Disability Studies in Israel. This, as well as other cultural systems that will not be discussed here, might be one of the reasons for the anachronistic perception of the status of PWD’s in Israel and the language used to describe them. In my opinion, this language symbolizes beliefs and attitudes that contribute to disability oppression in Israel, as Titchkosky (2008: 39) claims: “Ordinary talk justifies the shape of daily life by relying on unexamined conceptions of disability. This provides an opportunity to explore how meanings of disability are generated. Taken-for-granted conceptions of disability are one way in which disabled people are viewed as irrelevant and absent.”
4. Special education law and special arrangements for handicapped law, both were legislated in 1988
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Accommodation discourse Two Hebrew words, which refer to accommodations, are being used interchangeably by support services, university staff and faculty but also by students with disabilities themselves. The first term is the Hebrew word ‘hatamot’ ()התאמות. This word is connected to the linguistic root which means ‘to fit’ and its meaning is fitting studying demands with the students’ abilities. This word is the correct translation of the English term ‘accommodations’. Another term, though, is frequently used by support services, university staff and also by students with disabilities themselves. This term is ‘hakalot’ ( )הקלותwhich comes from the linguistic root ‘easy’ or ‘relief’. The meaning resulting from this word is that studying demands are being alleviated / reduced for students with disabilities.
These two words will be distinctively used in this theme. Since interviews and data collection were conducted in Hebrew, I will translate these two words into their literal meaning.
Table 3: The accommodation discourse - Hebrew terms and English translation Hebrew term
English Translation
Hatamot = התאמות
Accommodations
Hakalot = הקלות
Reductions
In my opinion, the frequent use of the term “reductions” in the accommodation discourse reflects the fact that many people in Israel still think that the role of accommodations is to make the exams or other learning tasks easier for students with disabilities, rather than accommodating their needs and making the system accessible according to their abilities and needs. This misconception reflects the academic/ educational culture in Israel toward students and people with disabilities, and might be one of many causes for the inequality that will be presented in this theme.
This point of view is also expressed in some of the websites of the universities that participants in the current study attended. For example, in one university website extra time Section 6 Page 66
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for exams is presented as a “special bonus for students with VI”. Another university website offers “technical support in exams - readings and reductions”. The Israel Government Portal also presents in one of its web manuals a “Rights and reductions guide for students with Learning Difficulties” ()מדריך זכויות והקלות. I claim that the terms accommodations and reductions in Hebrew reflect different models of disability. Whereas, the correct term reflects a social model point of view, the term ‘reductions’ reflects a patronizing, oppressive point of view that fits the medical model. Mor (2009) points out that that the term ‘reductions’ was also used in the laws that were legislated in Israel in the decade between 1980 - 1990. In the legal field this term was changed into accommodations, due to the understanding of equality and accessibility by which the obligation of accommodations stems from the fact that society was designed in a way that discriminates against PWD’s.
The Israeli disability discourse as a language of oppression These two discourses stand in the background of the current study and constitute important features in the academic environment in universities across Israel. The fact that PWD’s and participants in the current study adopted both terms presented above (people who own disabilities and reductions) is understandable due to the internalized oppression mechanism. Charlton (2006: 222) claims that PWD’s “are constantly bombarded with the values of the dominant culture.” In the Israeli discourse presented above these negative values reflect superiority and dominance of non-disabled over the inferiority and subordination of PWD’s.
In addition, the schooling process of students with disabilities also labels them and creates in them a sense of inferiority. Though participants in the current study were all integrated in inclusive schools, they had been told along the way what they can and cannot do and when and how they should do it, in effect preserving the hegemonic hierarchy (Beauchamp - Pryor, 2007). While the childhood schooling experiences of the study participants will not be discussed in this paper, integration raised a lot of difficulties and hard feelings for them. Since PWD’s were raised in light of these oppressive values, in an educational system which assimilated them, they developed a ‘false’ consciousness and internalized their own oppression (Charlton, 2006). As Beauchamp - Pryor argues (2007) the “values, norms and Section 6 Page 67
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interests of the powerful groups within society dominate subordinate groups who, consequently, internalize these values and accept the prevailing environment as natural.” The concept of oppression, and the lack of power experienced by people with disabilities in Israel, results from the dominance of one group over another. As this theoretical introduction presented the Israeli discourse about disabilities the next section will present incidents of discrimination and oppression that participants in the study described during the interviews. These incidents exemplify how speaking and thinking about students with disabilities is translated into action in the educational environment of university.
Oppression and discrimination in university exams Examinations are the most significant meeting point of the students’ impairment, abilities and needs and the disabling environment of university. Though all of the students in this study deserve accommodations, it seems that university staff, faculty and support services still do not know how to accommodate exams in a proper way. During the research period each participant had at least one experience in which something went wrong during the exams. These occurred due to three reasons: 1. Administrative failure - for example: the exam form that should have been sent to the learning center for the blind or to a special class for students who get accommodations did not get there at the time the exam was scheduled for, or the examiner did not show up in time. As Ayelet, Moran and Dvir describe: I had an exam and the examiner just didn’t come. I read it with the CCTV and all I had to do was just ”regurgitate” the answers and the examiner who rewrote the exam for me just didn’t come and it was so frustrating. Never mind the pressure in such a situation, the technical issue, I perceived myself saying: God! What’s the problem? To write? All I needed was just to write down everything I knew, but I can’t see. The examiner came one hour and a half later. It was so frustrating...like now I have to face my disability mentally. (Ayelet) The exam was scheduled for nine, I came to the university from Section 6 Page 68
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my parents’ home [takes more than an hour by bus]. Really, I woke up early, made all the efforts, and got there on time, and the examiner did not show up... At ten they told me to sit down, the professor already came (to the learning center for the blind) to see if I have any questions... It was their fault, and they did not even admit it. They told me no, it’s the examiner’s fault, we do not know what happened to her. They scheduled it with her but she did not show up and did not answer the phone... Finally, they brought in one of their volunteers who is French and has a very heavy accent, and she is not familiar with all the terms, some of which are foreign terms written in Hebrew, she started reading and at a certain question they switched her with the center’s secretary. The secretary started to read and after twenty minutes they switched her too and brought in an examiner. I thought, Are you making fun of me? and I was so stressed... I finished the exam with a terrible feeling... I told myself if I was a sighted student I would have come to campus at nine, had a class with all the other students, just a normal, regular exam... the professor gets there, so normal, without too many screw ups. (Moran) I did the exam, I had extra time for it, they put the exam notebook into the lecturer’s drawer after he already left the campus. What make sense? To give him a call and let him know that there is one exam that he needs to fetch? Instead, they posted the grades, I said I’ll call the department and they tell me “Dvir, you have not done the exam.” I said, “What did not I do? I did it! You saw me that day! Check if the professor took it.” Oops, the professor did not take the exam, he did not check it. (Dvir) 2. Examiner related reasons - these reasons can be divided into three: •
Examiners’ unfamiliarity with the test material and the field terminology - the examiners who are supposed to read / rewrite the exam were not familiar with the Section 6 Page 69
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terminology of the exam’s field of learning and thus could not accomplish their job properly. As Rachely, Dvir and Nadav describe: In the first year I had an exam which brought me to tears. She [the examiner/ rewrite] had no clue how to look at the text. It’s a law book and she didn’t even know how to look at it, till the lecturer would come it would be the end of the exam and I was stressed and stuck. Such a feeling of helplessness.
I cried, I
cried. (Rachely) We do the exams with readers from other academic departments, to avoid copying attempts. Great. But this is a blind person, a reader let’s say from psychology would not know how to read statistics graphs. If you do not know to read the question you will not be able to answer it. (Dvir) I had an exam, I entered the room, and the examiner told me “Hi, please sit there,” well, where is there? I am blind. Later on I discovered that she is not familiar with the terminology of the specific field, it was a long open book exam, and she could not catch up with me, my requests and the books. It was so frustrating, though I am already used to this situation, it always happens. (Nadav) The last event that Nadav describes points out the second examiner-related reason, which is insensitivity toward the students and their needs.
•
Examiner's insensitivity toward students with VI and their needs, as Moran describes: “The examiner would not even enter the Babylon translator software [using the computer], so I said well fine, don’t. Open the Oxford dictionary every few seconds, it will take ten hours to take the test.”
•
Other characteristic of the examiner that affect the student - for example, examiners that have an unclear accent as Moran describes:
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It is most difficult for me with people who have an accent, no matter what accent. Very difficult ... Hmm, their intonation is very different from mine, it drives me crazy during the exams. I had a few this year from different sectors and it was very, very difficult... In one exam I had a very good reader, old, charming, but she had a Russian accent and it is an English exam, it was crazy, crazy, and you sit there and just go insane.
3. Academic staff approach toward students with disabilities - in some cases the student had to submit a special request for each course individually in order to receive accommodations. These special requests are usually submitted when the learning material includes visual features that cannot be mediated through reading the test form solely and demands some creativity in order to make the test accessible for students with VI. The lecturers’ approach is most important in these cases since they can determine the balance between protection or violating of the student’s right to equality. Adva, a blind B.A. student described an event that occurred in one of the exams in her first year: “At one exam the lecturer decided that I would take the exam in class like everyone else and just whisper her the answers. She read the questions quietly and I had to whisper back. I decided to give up and left in the middle, it’s not fair. I asked to do the exam separately and she didn’t agree.”
These stories demonstrate that sometimes universities do not know how to treat students with disabilities and how to accommodate exams in a respectful and decent manner. Exams are also a meeting point of the opening theme that was presented previously, and other themes that will be discussed below. Consequently this is a situation where a student with VI feels most dependent on others and due to this dedicates a lot of time to accomplishing the goal. Other events of discrimination and oppression Some of the participants in the study described in their interviews events that are direct expressions of discrimination and oppression toward students with VI. Orly, a blind M.A. student, describes an event which made her leave the seminar she attended during the first year of her B.A. and move to another university: Section 6 Page 71
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The pedagogical instructor told me that she did not think I am capable of higher education because of my visual impairment and that she did not think I could go on, and of course she was right since a year later I was accepted to another university and here I am today ... they told me, “We got you as a challenge but this challenge is too big for the system to deal with and we did not know what we were getting in to.” Dvir, a B.A. student with VI, is the only student in this study who is studying statistics. He described an event with one of the lecturers: I asked them to print the assignments in Infi [Infinitesimal calculus] instead of writing it because I can not see. I went and talked with the teaching assistant and he told me that there is nothing that could be done about it. I spoke with the lecturer, and what did she say to me? “There is nothing to be done, you should be able get along with it like everyone else! If you can not see it you do not know math.”
Both of these events are an example of the dimension of oppression which Charlton refer to as “power and ideology” (2006: 223). Due to their labeling as visually impaired, Orly and Dvir were confronted with significant feelings of inferiority. The underlying educational ideology of this event argues that students with disabilities can potentially meet, or are expected to meet, some academic demands and cannot meet other demands. In Orly’s pedagogical instructor’s opinion a blind student is not capable of pursuing higher education, while for Dvir’s lecturer you are not able to know math if you cannot see. Young (1990) coined the term ‘cultural imperialism’ as one of the five faces of oppression she discussed. By using this social mechanism, the dominant group universalizes its experience and culture and establishes the norm. The dominant group “project their own experience as representative of humanity as such” (p.59) sometimes even without paying any Section 6 Page 72
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particular attention to it. In the events described above academic staff represent the dominant group which denies the legitimacy of students with VI to attend or accomplish higher education. Orly and Dvir were marked out by stigmas as the stereotyped other who cannot fit the dominant norms. By devaluating their impaired bodies they are denied access to higher education and by this they are rendered invisible. Another face of oppression that Young presented is violence. Though violence refers mostly to physical attacks against subordinate groups (blacks, Arabs, gay men etc), I found some similarities between this face of oppression with the events described above. First, both violence and these events occur in a social context that makes them possible and acceptable. Second, both violence and these events are directed to members of a group just because they are members of this group, and third, both violence and these events are happening due to the awareness of the dominant group that these acts will often receive light or no punishment. In both of the cases presented above the academic staff treated the students in an oppressive way just because they are students with VI, and due to the knowledge that they will not be punished for their acts. These events occurred in a social context which makes these events possible, as discussed in the opening section of this theme. If students with VI are called students who own disabilities, then they are the ones that are responsible for fulfilling the academic demands. Academic culture which transfers the responsibility for inclusion to the individual with the impairment, is the producer of a social context of oppression.
Summary This theme presented the practical difficulties, obstacles and barriers to learning that students with VI have to face along the way. These difficulties and barriers are coherent with the Israeli discourse on disabilities and accommodations, which creates a disabling environment in universities across Israel. It is clear that without equal rights, students with VI are denied the same educational opportunities as non-disabled students and will continue to be a marginalized group. Moran summarized this issue in a very clear way:
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Sometimes I look at my cognitive abilities, and at the things I know of myself regarding my disability, or whatever you want to call it. The concept of disability relates to the responsibility of society. Because in fact I am limited and disabled as a result of the responses from the society surrounding me. Then I tell myself, I might fit into something which supposedly this disability really hinders me from succeeding at. It might be that the academic environment is not adapted to my abilities and needs in some sense I still do not know how to define. I'm sure that something in here stops me.
This theme defined the disabling elements which Moran did not know how to define. The next theme will present one of the outcomes of this disabling environment, the tension between independent versus dependent functioning that students with VI are facing during their academic journey.
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Theme 3 : Between Independence, Dependence and Interdependence ___________________________________________________________________________ “Independence is not the essence of being human, nor is it a royal road to love, happiness, satisfaction in living, or mental health. Let us not, therefore, overemphasize for people who have disabilities a monolithic but disabling goal that glorifies an inappropriate, sometimes harmful, myth of independence.” (Kerr & Meyerson, 1987: 174)
One of the main issues when discussing people with disabilities is dependence and independence (Corbett, 1997; Kerr & Meyerson, 1987; Oliver, 1990; Reindal, 1999). Due to VI, students often experience great dependence on others (such as readers, support services, lecturers, friends and family). However, as mentioned in the first theme, it is most important for students to prove not only to themselves, but also to others, that they can function independently, just like any other student. Kerr and Meyerson (1987) claim that many people hold a dichotomous bipolar concept of dependence and independence in which “one pole represents all that is bad and the other all that is good” (p. 176). Individuals who hold this perception will be able to choose only between two options: independence (strength) which is linked to perceptions of ‘normality’ and dependence (weakness) which is linked to perceptions of ‘abnormality’ such as impairment or disability (Barnes, 2000). These two poles were especially represented in the data from the interviews with first year students and will be discussed in the first section of this theme. But in fact, this dichotomous bipolar perception ignores the fact that all human beings are dependent in one way or another due to their basic needs (Corbett, 1997; Oliver, 1990). As Kerr and Meyerson (1987) phrased it, “the rigidly independent person will inevitably be isolated and lonely” (p. 173). Since most of the criteria which evaluate independence are related to physical functioning, people with disabilities are often judged according to their abilities to accomplish daily living skills or self care activities by themselves (such as dressing, shopping and budgeting, cooking, reading and writing). Obviously, able-bodied people are not judged according to these tasks’ fulfillment, but according to other characteristics, such as income level, personal impression etc. (Corbett, 1997; Reindal; 1999). While for non-disabled managing daily living tasks take up little of Section 6 Page 75
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their time, people with disabilities may find these tasks more time consuming and accomplishing them independently can leave a short time to do other activities. That situation can obviously turn into a limited form of independence (Corbett, 1997).
This short discussion confronts us with the fact that the term independence can be defined differently according to the definer’s identity and society characteristics. Many tasks can be considered when discussing academic functioning. Some of these tasks are considered as simple, like navigating the campus or reading what is written on the board, while others are considered as more complex, like summarizing articles and submitting papers. Students with VI differ in their ability to accomplish these tasks independently according to their functioning level and the environment surrounding them. While some of the students are capable of accomplishing these tasks independently, others may need assistance from other students, readers, support services and so forth. The functioning level is affected by various factors. Some of these factors are personal, for example: impairment level, age of onset, personal knowledge, social competence and use of assistive technology (AT)5 which can decrease students' dependence on others. Other factors are environmental, such as accessibility of learning materials, budget for reading/ tutoring hours or lecturer’s attitudes toward students with disabilities. Whereas the role of the environment had been discussed in the last theme, this theme will focus on the students’ abilities and will present the tension between dependence and independence regarding orientation and mobility, writing during the lesson (taking notes), reading and summarizing learning materials and preparing for exams. The theme presents tasks according to the order they occur during studying in university, and not by their relevance.
Orientation and mobility One of the main fundamental issues concerning independent functioning of people with VI is orientation and mobility. Students in this study received mobility lessons before the beginning of their first academic year. Through the majority of interviews it appears that 5. Assistive Technology (AT) - devices like text to voice software (such as Jaws), magnification software (such as Zoomtext) or CCTV (closed circuit television).
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students are used to asking others for help regarding that issue. None of the students reported feeling that they were inconveniencing others when they needed to ask for help concerning placing and location. It seems that being dependent on others for this purpose is more natural for students with VI. Students who use a guide dog reported a higher level of independence regarding mobility and orientation, as Orly explains: “The most positive experience using a guide dog is that the dog gives me independence that changed my life. Today I go from one place to another with much more confidence than before [when I used a cane].” Other students who use a guide dog compare it to driving a car - a metaphor which emphasizes its implication for independent functioning. Though students felt comfortable to ask for help regarding orientation on campus, some of them found the fact that the classrooms’ name plates are inaccessible (not in Braille or embossed letters) annoying, as Dvir explains: “Is it so difficult to install an accessible name plate, one that you can grope? It costs nothing, maybe 4,000 shekels for the whole campus. This opacity is so frustrating for me because you can get blind at any given moment. You can walk the street in Ashkelon and suddenly a missile falls and you are blind. But people do not understand this.” Dvir describes the campus environment as inaccessible and oppressive, since it limits his functioning to a more dependent functioning. In his quote he also touched on the temporarily able bodied concept that was presented in the first theme, and the university as a disabling environment, an issue which was discussed thoroughly in the last theme.
Writing during the lesson / taking notes Since students in the current study differ in their VI (some are blind while others have low vision), their ability to write during the lesson is also different. Two other factors that influence the ability to write during the lesson are the use of AT, and the field of the learning. For example, students who use AT, are capable of typing notes using their notebook during the lesson. But if it is a statistics course using a notebook this is not always helpful and students will have to depend on others' writing.
For students with low vision, the experience of sitting in class and trying to see what is written on the board can be really frustrating, as Eithan describes: Section 6 Page 77
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My reading is so slow and it is so frustrating that you know that other people do things like that quickly and you do it so slowly. I sit in the class, in the middle of the lecture I can hardly see what is written on the board, it’s a weakness, a feeling that I have nothing to do with it, and the lecturer keeps on talking and you feel like you are hanging up in the air and it’s so frustrating. A lot of frustration. To avoid these feelings of frustration, many of the participants asked their lecturers at the beginning of the semester to email them the presentations they would be using during lessons throughout the semester. While most of the lecturers agreed to do so and even suggested that the students apply them in any question or problem, some of the lecturers refused to do it. As Maya, a congenitally blind first year student stated in her first interview: It really makes a difference. I really feel the difference between courses in which I have the materials and presentations and those in which I don’t have them. For example I have one course, the most terrible I have this year, the lecturer teaches all the lessons through presentations and he does not agree, under any circumstances, to upload the presentations to the course website. I talked with him, presented myself and asked him to email it to me personally, I even tried to appeal with the help of the social worker who helps students with VI, but I saw it is not going to happen and he did not agree to do it under any circumstances. He argues that once he did publish the presentations and someone took them and published them not under his name. He told me that I should read all the bibliographic list of the course and then I will be ready for the exam, but of course I am not going to do it, I just take summaries from other students. I don’t even bother to come to this class anymore.
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This event exemplifies how the lecturer’s approach can affect students with VI’s ability to attend class and learn independently. Like Maya, other study participants reported that in the beginning of the semester they copied lesson notes from three different students. As the semester progressed they identified which notes were most understandable and clear to them. As Orly described: “I learned whose summaries to ask for. At the beginning it was very difficult to choose, because everyone writes differently, but slowly slowly I recognized whose summaries are most clear to me.”
Notwithstanding that this dependency on others can be inconvenient for students, by doing this they have to interact with other students, an act which demands conversation, which sometimes leads to friendship. Despite this unintended benefit, copying others' summaries once again makes students with VI dependent on others.
Since this is a longitudinal research study, students were interviewed four times during two years of their studying. The analysis of the second year interviews with students who were freshmen the year before, revealed a change in the dependence on other students for taking notes. During the second year, many of the students shifted from dependent to interdependent in fulfilling this task. Since some of them got their AT devices only at the end of the first year (for explanation of the policy regarding funding of these devices see the policy subchapter in the literature review); they could now work independently, take notes by themselves and now became students who shared their notes with the rest of the class. These quotes demonstrate this shift:
Overall people are really excited that they can read my summary, if they sit behind me, and copy them because I use zoomtext [magnifying software]. (Tal) In one course it got to the point that I sent my summaries to half of the students, friendships were formed that way, I came to an opposite situation, I help people! So I said, hello what's going on here? I thought I’m the one who asks for help. (Ayelet) Section 6 Page 79
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Ayelet also described a shift that she experienced during the two years in her ability to ask other students for help:
The whole issue of society was really difficult for me in the first year, it was really hard to say: listen, I am visually impaired, can you help me? Read to me what is written on the board. It was really difficult. Today it is still inconvenient but this is who I am, and this is what I’ve got.
These quotes stress the fact that students with VI are not always on the receiving end of a relationship and independence can shift to interdependence. Kerr & Meyerson (1987) suggest that cooperative interdependence occurs when tasks are divided between people in order to achieve joint goals in a preferable way. The use of AT enabled students not only to receive help, but also to give it to others and by this they became group members sharing responsibilities and credits.
Reading and summarizing learning materials Reading and summarizing leaning materials are also tasks that are greatly influenced by the use of AT. While some of the students are capable of reading independently through the use of AT devices, other must be assisted by readers. This influences both the student’s efficient functioning and the amount of time dedicated to studying. All of the participants in the study were assisted by readers. Most of the participants confronted this as an inconvenient situation of being dependent, but also understood that they don’t have any other choice: Sometimes I have to postpone my own exams because the readers are busy with their own. (Adva) Without the readers I could do nothing. Nothing worked. For one semester I didn’t find a reader and I just drowned, I didn’t attend classes because I had no papers to submit. (Hezi) To tell you the truth I’m quite used to being dependent on others, Section 6 Page 80
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because in some way everywhere, every aspect of my life, there will be things that I can’t do by myself. No matter how independent I will be, still there will be things that I just can’t do alone. (Maya) Sometimes it is really frustrating, I have free time between classes which I can use. A sighted person would go to the library, but if I do not have a reader... It is also one of the reasons I'm unfortunately going to split for another semester. (Orly)
Students who read Braille can perform many tasks by themselves (using a Braille monitor) without the help of a reader. This can decrease the amount of time dedicated to reading and increase the student’s independence. Though previous research suggests that the more severe the impairment, the longer time it takes (Ghesquiere & Laurjssen, 1999; Meister, 1998), this study’s findings present a different situation in which blind students were able to read learning materials faster and more independently than students with low vision. The problem is that many of the learning materials in universities are not accessible for Braille users, as Shlomit describes: If the syllabus was in Braille I would have been less dependent on the readers. It’s like when a sighted student buys a booklet for a course, why can’t I have my booklets in Braille? Why not? It would just make things easier and less dependent for the blind student. A blind student can’t be completely independent, because no matter what, he is disabled, but for someone who reads Braille there’s no reason to be dependent.
As mentioned before, using AT can decrease students' dependence on others, but not completely, as Tal explains: “The software doesn’t read certain PDF documents, most of the articles in my field are in this format...I read half by myself and half with the reader. I prefer to ask my reader for help in certain cases, but I still read by myself, I can’t give it up.” Though AT is necessary for students with disabilities (not only with VI) most of the Section 6 Page 81
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universities in Israel do not have accessible working stations across campus, as Adva describes: “If I want to work with a computer at the university, write a paper or use the internet in the library I can’t do it by myself. I must ask for help from my reader or bring my own laptop.” Though students deserve a grant which allows them to purchase AT, some of them face problems getting it. Unfortunately, economic status still influences the ability to purchase AT and therefore affects academic functioning and level of independence.
Summarizing materials is a difficult task for students with VI, mostly because it is based on visual functioning like scanning the text, marking important sentences and gathering information which is presented in different places in the text. This is specifically hard for students who use a Braille monitor which allows reading linearly (line by line), and for students who use recorded books, as Dana explains: There is this website which I can download audiobooks from, but each track includes many chapters so you can’t go back and forward. So if I want to find important information I ask my reader to scan the chapters for me in order to find something...Scanning the text, especially when it’s long, is impossible. You can’t go through the text over and over. In contrast to Dana, Hezi has another explanation for why it is so hard for him to summarize learning material: Normal people learn to summarize by themselves. I didn’t make an effort to learn how to summarize materials...when I got rehabilitation for my VI I was a teenager so I never learned to summarize, and when I tried, my VI interrupted. Whereas the reasons for having difficulties in summarizing learning materials vary from one student to another, the common solution to this problem is identical for all of them: copying summaries from other students. All of the students in the current study asked their peers or Section 6 Page 82
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readers to copy their summaries.
Preparing for exams Preparing for exams is a task combining reading, summarizing and memorizing learning materials. Performing these tasks is affected by all of the factors mentioned above. Due to dependency on others, most of the research participants felt frustrated while preparing for exams. The difficulties fulfilling this task are: •
Dependent on readers and tutors - since most of the readers/ tutors are students themselves and have to prepare for their own exams, students with VI have to schedule their tutoring hours and sometime also the exam date according to the reader’s/tutor’s timetable.
•
Requirement of reading, summarizing and memorizing a massive amount of learning materials in a short time.
•
Lack of accessible learning materials which can be read independently during the student’s free time.
Moran summarizes this experience during her second interview: I am full of anger at this frustrating situation of preparing for an exam and you just can’t read this whole amount of reading material by yourself... I said to myself, you could have learned whenever you felt like it, without being dependent on anyone, you could just learn it, without too much... without referring to other people’s timing, when all the time you have to schedule reading hours according to whether it is a good time for them [readers] or not. Anyone who is studying for an exam, needs motivation and needs to be focused, you cannot be tired, I cannot study when I am tired. So if someone comes to you when you when you are all exhausted with fatigue, so he reads but you just don’t hear ... you are not with him.
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One of the consequences of being dependent on others is lengthening of the time required for learning. This issue will be presented in the fourth theme. The next theme will discuss impairment effects and their interactions with the university environment, which is one of the reasons that students with VI experience dependency on others.
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Theme 4 : Impairment Effects and Their Interactions with the Disabling Environment ___________________________________________________________________________ “The world is good at reminding me about all that I do not have and cannot do. And I am good at remembering.” (Pfau, 2007)
The lived experience of students with VI is not only determined by the enabling environment or by their dependence on others, it is also determined by the ‘impairment effects’ (Thomas, 1999) that they are facing. Some of the barriers, difficulties and restrictions of activity that these students are facing are “directly associated with or caused by” (p. 42) their visual impairment. Impairment effects, in this study context, relate to the activities that the research participants are not able to do due to the absence of visual functioning/ information, and thus they are not ‘disability’ in a social relational sense. The fact that blind students cannot read learning materials but have to hear them is an effect of their impairment, and does not stem from disability as socially produced. Nevertheless, many times these restrictions of activity may cause policy and decision makers to restrict other activities (for example, the lecturer who told Dvir that one who cannot see cannot know math, that is presented in theme 2), which can establish disability. In accordance, this theme will present the outcomes of the visual impairment effects and the ways they interact with the university environment. Four topics will be discussed: Increased time required for learning, forced intimacy, inability to see other students and the implications of this, and difficulties in practicum courses. But let me first open with a reservation, and discuss briefly an issue that was not discussed by the research participants. The first and most significant implication of the impairment effects of students with VI, is regarding which university department to attend. Except for two students who attended the law department and information system management department, all of the other participants were studying social sciences or humanities (though none of the students besides Rachely presented his/her choice as being due to the impairment effects).
Rachely described that when she registered for university she thought that “Business Section 6 Page 85
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management is much more difficult, like practically, all those graphs and economics - it will be difficult for me, like in my eyes” and thus she changed her decision and registered for law. I must qualify my claim that the choice of department was due to the impairment effects, because it is clear that the socialization process that students with VI had gone through during their lives also plays a key role in their decision. Many of the students shared with me that they were consulted by their rehabilitation counselor to register for psychology and social work because “blind people know how to listen.” Despite this, many of them opposed this stereotyped claim and registered for other departments in the social sciences or humanities. From my field experience it was clear that only a very few students with VI attend exact or life sciences departments. This might be explained by their impairment effects or by their socialization process. Further research is needed in order to explore this lack of representation of people with VI in these departments.
1. “Like the turtle, one step at a time, slowly slowly, but it works out” - Increased time required for learning The dependence on others, whether it is readers, lecturers, family members or support services, lengthens the time required for learning for students with VI. It is known that students with VI need 2 – 5 times longer to learn the same amount of course material, compared to a sighted student. The more severe the impairment, the longer time it takes (Ghesquiere & Laurjssen, 1999; Meister, 1998). One factor that is not mentioned in these studies, but comes up in interviews, is that students’ will to succeed and get good grades also affects the amount of time required to learn, exactly as it affects sighted students. Another cause for the lengthening of time required for learning is the fact that much of the learning is done by listening to learning materials recordings (instead of reading), as can be seen in these quotes: I haven’t used vision at all for a long time, so you know, you depend on too many things, I do most of the learning through listening, which takes longer... it‘s a different processing, it requires a different level of attention. (Moran) I learned how to learn, you know it’s only a matter of Section 6 Page 86
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experience. I also learned how to work with recordings, which is the most difficult. In general, things that are auditory. There are not many things in Braille, I have some on my computer but it drove me crazy. I have to work with my readers to summarize materials, because summarizing the recordings is really complicated. (Dana) The increased time required for learning influences not only academic functioning, but also social life. If the student has to dedicate his/her afternoon and evenings to catch up with the class, meet the readers or read learning materials using AT, free time for leisure activities and social meetings is significantly reduced. All of the students in the current study referred to this issue. Here are some examples: There’s no time. That’s exactly the thing, you depend on others because you are VI, you depend on their learning hours. You need to learn when your reader has time to meet you, yesterday I left the university before midnight...You learn when it fits your reader and it’s not fun. (Moran) A lot of time is spent with the readers. It’s a little bit like learning double time. (Adva) When I come home I have to work double to type all the summaries at the computer with the CCTV, but I have no other choice. (Ayelet) People always told me the story about the turtle and the rabbit...this is an analogy for my situation, I’m like the turtle, one step at a time, slowly, slowly, slowly, but it works out. (Eithan)
Moran, Eithan and Kelly also describes the effect of this on their social life: Even if you finish courses at twelve p.m., you need to wait for the reader till four p.m. It really sucks, you say you want to go home, it’s Thursday and all of your friends went home, and you Section 6 Page 87
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just arrive home at ten in the evening and throw yourself into bed. Like you have no one to meet...one of my friends said come on, you live next door, can’t you say hello? No, I can’t! I don’t have the time! (Moran) It took me a lot of time to read, I was at home for hours, I think that most of my B.A. I didn’t have a life, my social life was reduced to, you can almost say, zero. I’m not whining, I’m saying it because truly I had to give a lot, lots of hours, and it took a long time. (Eithan) I was so busy with studying, and I felt this lack... I would go to the library, then go to class, it took me long time to operate my computer, and mobility also rubbed a lot of my free time. I had almost no time to talk to other people. (Kelly) One of the solutions that students find in order to relieve this stressed period and to go through this intense learning period successfully is to extend their learning over one more year. By doing so they decrease the number of courses they have to learn each year. Ziv, a blind graduate, describes both the academic and social outcomes of this act: One of the things that allowed me to produce the maximum of my university period, and I'm not talking necessarily about the academic outcome, but also in terms of establishing my independence - to leave the house, feel what it is to live in the dorms, acquire these skills of being an independent adult, socially-wise. The thing that made it possible was the fact that I’ve split my studying.
This extension of the learning period sometimes clashes with the funding policy of the NII and many students describe difficulties due to this discriminative policy. Orly, an M.A. student, describes how the lack of time influences her ability to graduate successfully and the economic problems resulting from her application to extend her learning for another year:
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If I extend the learning period for more then two years I will have to pay the tuition by myself, but I don’t have any other choice because technically I can’t cope with the load. I have to look for reading materials at the library, scan electronic databases, neither of these are accessible tasks, especially with the Virgo [text to voice software], it is just inaccessible. My Braille monitor is on borrowed time, because if I do not learn or work it will be taken away from me. What can I do? I am currently not going to take a loan, I don’t have the option, believe me I would prefer to settle down without their kindness, and to purchase the AT myself. It's like I have to worship them because they do it for me. This is exactly the feeling, and it's hard. Sorry I am so frustrated by the NII. Tal, a B.A. student, got an extension for submitting her seminar work. Since her second semester exams period was most stressful, with eight examinations to go through, the seminar course lecturer allowed her to submit the paper up to the beginning of the following academic year. What Tal did not take into consideration is that the NII fund reading and tutoring hours only in the academic year period (in Israel October - June). Tal discovered that she cannot get funding for reading and tutoring hours during the summer vacations, and finally submitted the paper with the valuable help of her mother. Tal described it with a lot of humor: “I called home to let my mother know that my final grade in that seminar work is 88, so she told me well fine 80 for you and 8 for me, and I said well, good! Because she’s cute and has invested in it so much time and learned a lot about Stalin and Mao. I always tell my parents that I am saving them the money as free listeners at university.” Though Tal is able to make fun of the fact that her mother helps her read learning materials, both Tal and Orly’s stories illustrate how impairment effect can turn into disability, as socially understood, by a disabling policy operated by the NII. For students with VI learning takes more time, as these stories demonstrate. Higher education and state policy might try to understand this impairment effect and express it in more accommodating and enabling regulations. Unfortunately, this Israeli example shows how regulations may turn impairment Section 6 Page 89
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effect into disability by creating a disabling oppressive environment for students with VI. 2. Forced intimacy The term ‘forced intimacy’ is used in literature to describe rape in dating situations (Shotland & Goodstein, 1983) but also to describes relationships between people who are committed to stay together for fulfilling a task, such as reserve service (Sion & Ben Ari, 2009), between adult siblings living together in their parents home (Newman, 1991), and between caregivers and elderly people who live in nursing homes (institutional living) (Mattiasson & Hemberg, 1998). In the current research, the term will be used to describe intimacy which exists between students with VI and their readers (not necessarily a constant figure) or other persons, in situations of enforced togetherness and when the student must be assisted by others. Moran describes this situation in a very detailed and sensitive way: To sit in front of someone is like having another test. Because... they look at you, waiting for an answer and you can just say ‘Hey, can I think a minute?’ and take some time just to really think. I still have not found a tool that can calm me down in these situations. It’s an examination of two tests. Completely. Each time it is another reader, it's like you have another examination to face. It's not a constant figure and then okay you get used to his/her presence the first time, the second time is easier, the third even more ... and then comes the test itself, like technically, the paper, and I say, well here is the paper, but I did not do it alone, I did it with someone else... and then, "Hello, I am a student, I will read your test, my name is such and such" well good, and then she suddenly becomes serious. I always try to calm myself with asking her a question such as, “Well so what are you studying? In what year are you?” But it does not always go so well, because it doesn’t always calm me. You sit and you want to think, or to take a rest for a minute, you have time for it, Section 6 Page 90
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but you cannot do it because you are being watched, and even if you do not see it you feel it. This is one more test to face, and I am really frustrated by that sometimes... sometimes I do not feel like answering the questions, now I have 100% extra time and I want to sit quietly for 10 minutes, to make some order in my head, organize the schemes, and it doesn’t work. I can ask for a break, but you know ... there is such tension. It’s an examination...It's one of the only things that makes me confront my visual impairment. I can’t find any other significant event that puts you in front of yourself and makes you say, if only I was different. The only possible way for Moran to take exams, the same as other students with VI, is through readers. The examination situation alone is a very stressful situation for every student, disabled or not. The dependency on readers makes it even more stressful and the fact that the reader’s identity is unknown and changes between exams makes it even more difficult and complicated to face. The inequality that exists between the reader and the student increases feelings of dependency and reduces individual autonomy. Readers are not trained for this job, and sometimes might not be aware of the emotional implications that this situation holds. Readers have to aid the student, who is in a vulnerable position but who still has rights to privacy, upon which the reader may not intrude. Students with VI have equally legitimate needs for respect for their privacy, a legitimate wish not to be forced into more intimacy than the exam situation demands. This ‘forced intimacy’ situation also arouses feelings of loss - due to the loss of sight that is mirrored by this experience. For Moran, as for other participants, exams are a flooding situation which sharpens the impairment effects. This situation made Morn felt trapped in a body that cannot do what she so frequently wishes it could (Pfau, 2007). Nadav described another event when impairment effects forced him into intimacy in a really difficult situation in class: Section 6 Page 91
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In one of the courses about family crises the lecturer showed us a French film which included a lot of violence. My experience was very complicated since all of the students sat quietly and watched it, and one student who sat next to me had to read me the subtitles and describe what was shown but also process the film for herself, and there were really difficult scenes in it. I had many questions about the film, and everyone was sitting silently, and we were talking in between and she had to deal with it, understand what was going on and how it affected her, and I needed her help. This doesn’t happen so often, but it is a complicated situation... this need to be helped by one of the students who must translate the content for you, you understand that you are really fooling yourself about your ability to control. Other participants also echoed similar events in which the lecturer presented statistical graphs or diagrams which needed to be mediated to them verbally. These events emphasize the difference between sighted students and students with VI, and mark the latter as the ‘other’ due to the impairment. Dvir discussed another situation in which forced intimacy occurred. This event was not only affected by Dvir’s visual impairment, but also by the inaccessibility of the university he attended: “The grade system had been computerized [before it there was a vocal answering service] and now it is inaccessible... so a blind person has to go with someone like you, who he doesn’t hate and doesn’t know, in order to read the grade from the board for him. Why would I want someone to see my grade? Where is my privacy as a human being? It’s humiliating.” Once again, in this case, impairment effects were translated into disability in the social relational sense, due to the disabling environment of this specific university.
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3. Participating in class discussions Another impairment effect is the inability to see and recognize other people, which is especially important for participating in class discussions and for social interactions in university. Some of the research participants choose to avoid participating in discussions due to this impairment effect; a few of them even asked the lecturer not to turn to them in class since they will not be able to figure out that he/she turns to them due to lack of vision, as Ayelet describes: “Just this week I went to one of the lecturers and told her that if she asks a student to read something in class, do not turn to me to not embarrass me since I am visually impaired.”
While some students adopted a technique which bypasses their impairment in order to participate in a discussion (for example, asking the student who is sitting right next to them to take the floor for them), other students described their difficult attempts to participate in discussions. Eithan’s quote demonstrates this: In class everybody loves to talk, we sit in a circle and everyone participates in the discussion. I really had trouble entering the discussion and integrating into the stream of speech, as I always waited for someone to finish his sentence but by then someone else has already taken the floor. Many times it was due to my visual impairment. I spoke about it with others and... someone told me, ’It’s too bad you cannot drive, the road was teaching you to fit in. On the road you should be aggressive.’ I talked to her openly about how it is hard for me and I liked her comparison. When I give lectures I do it very well...but in these forums I felt less comfortable. This analogy between discussion skills and driving is particularly true given that both are related to impairment effects. Class discussions are inaccessible not only for students with VI but for students with other impairments, especially hearing impairments (Heiman, Almog and Godder, 2006). One of the solutions that students with hearing impairments use is
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transferring an FM transmitter6 between the students who speak. Besides the fact that they can hear the speaker’s voice more loudly this device also organizes the discussion since students who want to speak have to hold the transmitter. The use of this device changes the discussion culture in a way that can fit students with VI and other disabilities.
Tal, who has some remaining vision, claims that for her discussions in small classrooms are more accessible and comfortable than discussions in large classrooms: “I don’t see the people sitting in the room. I don’t know who they are, so it is difficult to speak. I sit in front, I can’t see who’s sitting behind me, I recognize voices so I can tell if this voice is behind me or beside me. The attendance list is being passed and they [sighted students] know who is who and I just don’t see it...in seminars it is easier since there are tables, so it is easy to see faces and names, it's more of a discussion and I feel I have more room to express myself.” Small classrooms are also a good solution for increasing the participation level of students with VI in discussions, though it is not possible in many courses. 4. Practical Work - between impairment effects and disability Some of the departments students attended require students to participate in a practicum course. Students discussed many difficulties in finding a practicum that fits their abilities, impairment effects and desires. Here are some examples: I really wanted to do the practicum with teenager street gangs. But it demands working at night, on the streets. I was really enthusiastic about that, it sounds really cool and full of action, but I thought about it again and told myself can you really walk in the city, at night, where there are stairs and other obstacles, and it really frightened me, like technically doing it. (Moran) I figured out that since I am blind I will not be able to work with children on my practicum course because it demands playing with toys which I just cannot see. (Nadav) Moran and Nadav prevented themselves from participating in a practicum that did not match 6. A small personal audio device that amplifies sounds and broadcast it directly to its owner hearing aid.
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their abilities and impairment effects. In contrast, Orly was denied the right to participate in a practicum that in the opinion of her lecturers was not appropriate for her abilities: I signed in for the practicum in a school for children with mental retardation. I was told by the school that I will not be able to work there since I am blind... they claim that it will be to difficult for me to see what the kids are doing in class and keep eye contact with them. My lecturer also told me this, so I invited her to see a lesson I was teaching, but she never came. She told me that I will not be able to figure out if the student is listening to me or just staring or thinking about his girlfriend... well, how can a sighted teacher figure out if the student is learning or not? I feel that they don’t give me enough chances to prove who I am and what I can do. If you give me a chance and I fail, okay, I can understand that, but to reject me before even giving me a chance to prove myself? I really think I have the abilities. Later on, Orly was accepted to another school where she taught a class of children with intellectual disabilities and had a great experience. She used many creative methods, combining AT and Braille but especially a lot of mutual respect. Her students learned that they are not the only ones who need help, and they can also be on the giving side, not only the receiving. They helped Orly present pictures in the correct way when she presented them upside down and learned a lot about human diversity.
These examples teach us that the only one who can really analyze the impairment effects and their influence on functioning is the person with VI. Academic staff must be attentive to these students and trust them, rather than label them, for they are the most professional evaluators of their abilities.
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Summary This theme presented issues that students in the current research had to deal with due to their impairment effects. Impairment effect restricted the students’ activities in a direct way such as: lengthening the time dedicated to learning, attending exams independently, participating in class discussions and in practicum courses. These restrictions must be taken into account, not as a label but as a kind of diversity, when accommodating the academic environment for these students. Finally and most importantly, these effects should not become the medium of disability, as presented in some of the stories above. The next theme will present other social aspects of being a university student with VI.
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Theme 5: Social Relationships and the Quest for Personal Identity ___________________________________________________________________________ “Our sense of self, and how we orientate ourselves to the world, is irrevocably tied up with the bodies of those around us” (Price & Shildrick, 2002: 63)
University is not just studying. It is also campus life, leaving the parents' home for the first time, dorms, social activities and making new friends. Research studies presented in the literature review claimed that students with VI have difficulties in social functioning, lack of social skills and small social networks (Kef, 2002; McBroom, Tedder & Kang, 1991; Sacks, Wolffe & Tierney, 1998). However, in the current research only one student described acute difficulties in creating social interaction. All other students described having active and functioning social lives. Many students mentioned that people got close to them because of the impairment, and many reported a lot of positive attitudes and admiration of them.
During the interviews many students discussed their social relations and interactions with other students, sighted and visually impaired. In accordance with the two narratives which were discussed broadly in the first theme presented below, ”Normalizing the disability” ( I’m just like the others), and “Disabling normalcy” (the others are just like me), students inquired into the way in which their friends affected these narratives - do their friends disable or normalize their identity ? Another way to phrase this is “Who are my friends? and what does that say about me?” Each of the participants brought to the interview a different perspective than the other participants. However, there were similarities among the participants as well.
This theme includes six subsections. The first will present the influence of students with VI on the non-disabled society. The second will present initial strategies that participants used to interact with other students. The third will present interactions between students and their readers. The fourth will discuss participants’ attitudes towards the in-group and the out-group. The fifth will discuss the stage of achieving personal identity and the sixth will introduce the dyad of academic and social success.
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University environment as a socialization agent Many sighted students did not interact with people with VI before university. Though in Israel most of the children with VI are mainstreamed into inclusive schools, many of them are the only students with VI in their schools and sometimes in their school districts, as described in the literature (Neustadt - Noy, 2004; Rosenblum, 2000) and by participants in the current study. As Jenks (2005: 154) claims “sighted people do not have a lot of contact with visually impaired individuals, because sighted people do not exactly understand visual impairment, because sighted people are scared of blindness, and because sighted people set the rules of interaction.” The ‘contact hypothesis’ (Allport, 1954) argues that stereotypes and negative attitudes against minority groups are based upon lack of acquaintanceship between groups. Allport proposed that relations among groups that are experiencing conflict can be improved by properly managed contact between them, under appropriate conditions. Interpersonal contact is one of the most effective ways to reduce prejudice between majority and minority group members, but in order to substantiate the hypothesis a common goal should be presented. This, in order to create balance between the groups. Dana, described in her second interview an event that occurred in her dorm apartment. Despite the fact that for Dana this was not a positive event, it substantiates Allport's ‘contact hypothesis’: One of the girl’s moms comes every now and then to cook for her in our apartment and sleeps over on a mattress in her room. One morning she was up early and we had a conversation in which she told me, like, with good intention, that at first the girls were shocked and afraid and then it surprised them that they found out they can have fun with me. She said that "they really were concerned, they didn’t know how to deal with your blindness and they were crying, my daughter called me crying." I felt bad that day. I said what, that much? When I told other people about this they said "Is she so lacking in tact that she tells you that?”
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Dana’s roommates had not met people with VI before this experience. The fact that they had to deal with a blind roommate scared them and might also threaten their expectations about university dorms. But when they had to live with Dana, they had the chance to really experience contact with someone who has VI. In this situation, the students (Dana and her sighted roommates) were all equal and shared the same goal - to make the most of the dorm experience, to have their apartment a pleasant place- both physically and interpersonally. In this situation they discovered Dana as herself, rather as “the blind girl”, and found out that they could even have fun together. The current study focused only on the experience of university students with VI. It is clear that further research should be done in order to examine social interactions between sighted university students and students with VI, as perceived by both sides. Using humor, using guide dogs - Different ways to get into social interactions Many of the students talked about using humor as a coping strategy that helped them to “break the ice” or get out of embarrassing situations. You bump into something and someone asks, didn’t you see it? So you say NO!, or my friend bumped into a signpost so as revenge she hit it with her cane. There are many absurd situations but it is a part of our coping strategy, we use it a lot, it’s in our language. (Tal) I think that humor is an outcome of looking at yourself in the mirror and saying, I am a person with blindness, and accepting it, I think that it really opens a new channel, because people don’t really know how to get close. (Nadav) Sometimes people would give me a ride, so I would say to those who took me, “Look, I hate to take my parent’s car all the time”… I can not remember now but there are all kinds... humor breaks the ice, it plays an important role. (Dana)
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While humor was a strategy most of the research participants used to break the ice and start conversations with other students, guide dog users have a unique experience regarding their social life. Though during the research period only four of the participants had a guide dog (by the end of this period another participant got a guide dog as well), its implication for social life is very clear and powerful. These students have a similar narrative, and its main axis is the way guide dogs help in creating social interaction. As Adva described: “The dog is really something that connects you to people, I’m a sociable person anyway but the dog really helped... Some lecturers called the dog’s name while checking the attendance list, while others turn to her during the lessons.”
Nadav, who used a cane before, describes the transition to guide dog and its effect on social interaction: “A cane makes people draw away from you, a guide dog make them come close...there is something really exciting about guide dogs, this function that brings me and Teddy together - without Teddy I can’t walk and without me Teddy isn’t functional - so there is a match between blindness and guiding which is very strong. The connection between the person and the dog, the function which the dog fills, this devotion, it’s really powerful.” Ziv, who also used a cane and moved to a guide dog, suggests the following analogy: When I used a cane, I felt like I was sweeping people out of my way, I could hear them clearing the way, stepping backwards so I could pass. Now, when I am using a guide dog, I feel that people are really getting close to me thanks to my dog - it really creates social interactions. As Ziv described accurately, using the cane indeed means making a sweeping movement. Other themes that emerged from the data also refer to the social disadvantages of using a cane, as some people, blind and sighted, refer to this as a stigmatic device which symbolizes the “poor blind”. Though a guide dog both enables better orientation and mobility and promotes social opportunities, in Israel only one percent of the blind populations are guide dog users. Section 6 Page 100
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“Friends should be friends” - Student - reader/ tutor interaction Readers and tutors who work with students with VI are usually advanced students from the same department the student with VI attends. Readers and tutors are paid hourly by the learning center for the blind according to a report submitted by the student with VI. An important issue that was mentioned in several interviews is that students with VI found it important to separate between the roles of friends and readers: I don’t think my friends should sit and read articles for me, especially if they have read them before. That’s why I have readers. (Maya) Friends sometimes help me read stuff, but I don’t want to be a burden, friends should be friends. (Orly) I have the cane, and I can walk by myself - I want people to be my friends, not my companion or caregiver. (Shlomit) Once again the tension between dependence and independence, which was presented in the third theme, arises. Though many students stressed that they do not want their readers to be their friends and vice versa, this formal contact developed into more than that and sometimes even to friendships, as Kelly explains: Most of my friends are readers or tutors or vice versa. I have friends who turn out to be my readers. This is not the case of having “university pals” like I hear about from other people. I don’t have a friend who just learned a course with me and turned out to be my friend. Kelly presents here a different perspective on the roles of readers and friends. This perspective was well known to me from my previous work in the field and from my own experience as a reader. The student- reader situation fit some of the criteria which according to Allport’s contact hypothesis (1954) can lead to positive interaction between groups. The contact is intimate rather then random and occurs between members of the majority and the high status members of the minority group. Section 6 Page 101
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However, this situation does not fit all the criteria which lead to positive interaction. First, this contact does not occur between people in equal positions - the student with VI is the employer, while the reader/ tutor is the employee. Second, the students who are involved with this do not always have common goals. As mentioned before, sometimes readers and students have exams on the same dates, which many times cause conflict between the student’s needs and the reader’s abilities. Third, the contact is not always enjoyable and fourth, it does not take place by choice, nor is it something selected over other rewards. Allport claimed that contact that occurs under these conditions can also arouse prejudice and stigmas, which indeed emerged from some of the students’ interviews. I am not sure that student- reader contact can be significantly demonstrated to be either a positive or a negative interaction. The current research findings presents evidence for both sides - sometimes this interaction was a formal relationship defined only for work, while in other situations it became a fertile ground for friendships.
Playing war - playing solitaire: Attitudes towards the in-group and the out-group This section will present attitudes and perceptions that students expressed during the interviews toward their in-group, university students with VI, and toward the out-group, sighted university students. While some participants stressed that having sighted friends is most important to them and is a significant indicator for social success, other stated that they prefer having friends with VI.
Dana, congenitally blind, discussed in our third interview her relationships with sighted and visually impaired peers, and presented her choice to live with sighted roommates: When I live with blind people, from my perspective I play war (the card game). When I live with sighted people - I play solitaire. With visually impaired people I feel like I am in a constant competition, when it comes to functioning, I am just like that. For example, when I was in the rehabilitative housing program...I was the new girl. There were two other girls more experienced, one went blind recently and knew what it’s like to Section 6 Page 102
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see and do things which I did not know to do, and I felt the competition as if I was not good at doing these things, I was not good. Period. This was my feeling. With sighted people you do not have this. They [the sighted] do not judge you according to what you know or do not know. You do what you can, they treat you as a blank sheet. Though previous studies suggest that a common experience of impairment provides a level of empathy and understanding which is reflected in preference to interactions with visually impaired peers (Rosenblum, 2000; Sacks and Wolffe, 1998), Dana presents here another point of view about social preferences. This point of view reminded me the phenomenon of ‘internalized homophobia’. Homophobia is not necessarily the domain of heterosexuals. In a homophobic social environment, even gays and lesbians internalize and nurture self-hatred and self-loathing. In such an environment hatred is being developed not only toward others who are not like me, but also toward myself because I am not like the others (Kama, 2009). Dvir also discussed a similar point in his interview: “Society creates stigmas, but I cannot completely blame society, because even between blind people they create stigmas about each other. I see it.... With blind persons I think I'm in touch with only three or four people because all of the stigmas [within the group]. We are a crumbled group, divided. When you’re in the sighted society they pull you up, you want to be part of them, and you want to separate yourself from them less. You know, everything you do and I cannot do will fill me with aspiration to do it because I want to be like you. Because sighted people are role models for me.” Both Dana and Dvir have internalized the compulsory able-bodiedness values, as described in the first theme, and present another dimension of “normalizing the disability”. The oppressive society in which they grew up has taught them that sighted equals normalcy while blind equals undesirable deviant. Just as queers have internalized ‘heteronormativity’7 as a concept that reveals the expectations, demands, and constraints produced when heterosexuality is taken as normative within a society, people with disabilities have internalized 7. A term coined by Michael Warner (1991).
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ablenormativity. Heteronormative, like ablenormative attitudes, are oppressive and marginalizing of perceived deviant forms of existence (sexuality, gender or disability), which make self-expression more difficult when that expression does not conform to the norm. Influenced by Frantz Fanon’s “Black Skin, White Masks” (1952) in which he claimed that black people are trying to whiten their skin in order to be accepted into the dominant group (for example by having white friends or marrying white spouses), I claim that by preferring sighted friends, students with VI pave their way to integrate into university’s mainstream society, the non-disabled students. A different examination of this social tendency is based on Tajfel’s (1978) ‘social identity theory’. According to this theory, people who are part of a minority group which is not identified with the mainstream will confront a negative social identity, especially when their in-group is inferior. This negative perception may create a conflict between the individual's belonging to his/her in-group and belonging to the group representing the dominant culture. Dana and Dvir, like other participants who echoed these perceptions and attitudes, were facing a conflict while constructing their social identity. Berry (1980, 2003) suggests a terminology that describes four major options or strategies that are used through the acculturation process in which one cultural group is facing extensive close contact with another culture: assimilation, separation, integration, and marginalization. In the current study, the research participants, university students with VI, were acculturated into university society, in which the sighted and non-disabled students represent the mainstream. The four strategies that Berry suggests will be discussed through this analysis as different options for social functioning in accordance with which students behaved. The strategy presented above is assimilation, by which they identify mostly with the sighted students while conceding the loss of their own culture (Berry, 1980).
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Achieving disabled identity Tal, a B.A. student with congenital VI, went through a process regarding her social preferences during the research period. In our first interview Tal discussed her relationship preferences from a point of view that was similar to Dana’s and Dvir’s perspective. Tal was disappointed by the fact that most of her friends are visually impaired and claimed that it represents her lame social functioning and her inability to fit and integrate into the mainstream. In our second interview, Tal changed her perspective about social relations with age mates, visually impaired and sighted, as this quote demonstrates: I stopped caring about the fact that most of my friends are visually impaired or blind, I stopped seeing myself as inferior, as less equal than my other [visually impaired] friends who have sighted friends. Previously, I felt I was inferior because I did not have sighted friends... Today I am happy for my [visually impaired] friends who have sighted friends and I do not see it as a problem [that I do not have sighted friends], though before I always used to, it was like how do they do it? What don’t I do that they do?… The question why don’t I have good sighted friends or a sighted best friend stopped bothering me. It bothered me during high school and I had the thought that once I leave home a whole new world will be open and I will know many people and get together with them like that [quickly]… and suddenly I realized that I just fantasized about it, that it is not really like that. Tal had finally come to the conclusion that having more friends with VI than sighted friends does not say anything about her abilities or social success. Jonathan, another B.A. student with VI, claims that the preference to have friends from the ‘in group’ or the ‘out group’ depends on the way the person accepts his/ her impairment:
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not afraid to touch and sense things, but with a sighted person I would not do things that I want to do. But since then I think that I've come to terms with the problem; I'm not ashamed. So I do not really differentiate between people, whether it is someone with VI or blind or whether they are just a friend from university you see, I do what I should do! And if I have to do something to help me adapt better then I just do it...I think that someone who does not accept his problem of being visually impaired or blind, like emotional, mental and physical acceptance, does not accept the fact that he can’t see, and he will have problems with adjustment throughout life. He will have a bad lifestyle, and it will never be easy for him.
Kelly, a B.A. student with VI in her last year, also stresses the importance of accepting yourself, and your impairment. She suggests this point of view discussing the possibility of having a spouse with VI: When I thought of a spouse I didn’t thought of VI, I examined other parameters and left the impairment to the end. I said that I can get along with any impairment other than a hearing impairment because I will not be able to see him sign... Finally I understood that not considering and accepting a spouse with a VI, is not accepting myself. Phinney (1989) claimed that there are three stages of ethnic identity that develop in minority group members: unexamined ethnic identity, ethnic identity search and achieved ethnic identity. Both Tal, Kelly and Jonathan had reached the third and last stage “achieved ethnic identity”. At this stage, the individuals resolve questions about the future and develop clarity about their ethnicity through a deeper understanding. Appreciation of ethnicity occurs as long as there is commitment to reconciliation with this identity. Tal, Kelly and Jonathan, as well as
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other participants, have internalized their disability and feel safe about this identity. They also volunteer for advocacy activities and support groups for people with VI as well as other disabilities, which symbolizes their pride in the disabled group to which they belong. Regarding Berry’s strategies of the acculturation process, the strategy that fits here is integration. Participants who choose this strategy desire contact with the new culture while maintaining their original culture. The issue of achieving disabled identity will be discussed in the concluding chapter Academic and social success as a dyad Each interview in the current study (other than the fourth one) ended with the same question: “How do you define success in university, from your own point of view?” All of the participants in the study indicated that success for them is not only academic success, but also social success. For example: Social success, academic success, success in orientation among people, success in every aspect. (Adva) That you can call yourself a student, that you’ve entered this cycle of university life, of coping with society in university - this is the thing. It’s not even the studying itself; it is facing everyday tools like coming here, being with sighted people that are not like you. (Ayelet) It is a dyad - It's so much fun to interact with people that I meet and the rapprochement is mutual and that we have something to talk about apart from studying, going out together, just living together mostly in the dorms... staying weekends and preparing food together... Just like one big family. (Orly) Socially, it’s really good for me to face things and I truly believe that if you have an impairment it’s for your own sake, because you can handle it, can learn from it, and can give other people hope, a smile, you give others a reason to smile. (Moran)
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This dyad between academic and social success was very clear in the research, and it was also prominent in the literature review. Integration into the social environment was found to be an essential factor which influences one's commitment to the academic system (Tinto, 1975). McBroom (1997) reported that senior students and graduates with VI indicated eleven factors related to their academic success. Five of the factors concerned social interaction: contact with peers and professors, assertiveness, advocacy and independence, extracurricular activities and social networks, transportation and orientation and mobility skills. Hodges & Keller (1997) found that lack of social integration might be one of the factors that relates to dropping out of university. Contrary to the population of students with VI, which is characterized by a high percentage of dropouts, none of the participants in the current study dropped out of university during the research period (though some transferred to another university or department). This fact may have several explanations, one of which is the high awareness of the participants of the importance of social success. Moreover, most of the students experienced their academic journey as something that improved their social functioning, as Ziv argues: Attending university gave me a chance to practice abilities which I didn’t have before: both academically and socially. Above all, in every way, the university for me is the university of life. It is not only the academic experience. I set myself the challenge, when I got to university, and that's what I want it to be.
For students with VI, as for sighted students, attending university is an experience which shaped their lives. This issue will also be discussed in the second section of the findings, the timeline analysis.
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Summary Participants in the current study refer to the experience of being a student and its implications in a holistic way. Attending university and being a student is part of the participants’ strategy of integrating into society. While attending university, as mentioned before, each student went through a repeated process of sense making. Social interactions play a great role in this process and are part of the adjustment process students go through. A clear finding is that social success is a part of the definition students use to describe success in university. The next theme will present another important issue which is related to social interactions, the “coming out” process of students with VI.
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Theme 6 : Closeting and Coming Out - On the Way to Self-Disclosure ___________________________________________________________________________ “To be disabled or not to be disabled, that was the question.” (Swain & Cameron, 1999: 70)
All of the participants in the current study were defined as legally blind—eight were completely blind (five of them from birth) and the other seven were visually impaired. In addition to this heterogeneity in visual capacity, there was also a wide range of variation with regard to the visibility of the impairment. While some of the students have an impairment, and could be identified the moment they enter a room (due to the use of a cane or guide dog, or an unusual eye appearance), others have hidden impairment, allowing them to “pass” as non-disabled (Goffman, 1963). As Ayelet, one of the study participants who has a hidden impairment, explains: Even if today I'm pretty open and tell people that I am visually impaired and that’s the situation, how long can you do it? Will you tell every person you meet? Why do I need to put a label on my forehead?...When you have a visible disability, people know it, thus the functioning is different than in the case in which you have to explain it every time, again and again.
Some of the students who were making efforts to hide their impairment shared with me their various techniques, which included: •
Pretending to talk on their cell phone while walking in the street, so that if someone were to wave at them from across the street the students could say they were distracted and did not notice them waving.
•
Asking a friend to check off their name on the class attendance sheet when it is passed around, so that others will not notice they need to bring the page very close to their face in order to see what is written.
•
Absolute prohibition on using a cane, even if there is a clear need, as this will undoubtedly stigmatize them as the ‘poor blind people.’ Instead, walk very slowly, hold a friend’s arm, or accept temporary dependence on others. Section 6 Page 110
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It seems that these students are aware of the stigma associated with their impairment, and thus seek to control the perceptions of others so that they have the opportunity to be perceived as equals (Olney & Brockelman, 2003).
During the analysis process, it occurred to me that there exists a similarity between the students’ narratives and that of “coming out of the closet,” which usually characterizes queer narratives and discourse. At that stage, I was not aware of the great deal of literature in Disability Studies that has proposed an analogy between disability and sexual orientation. This analogy suggests that people with disabilities have more in common with queers than with other categories of oppressed groups (oppression due to gender, race etc.) to which it is often compared (Gerland-Thomson, 1997; Olney and Brockelman, 2003; Samuels, 2003; Shakespeare, 1996; Swain and Cameron,1999). The analogy stems from several similar characteristics (Samuels, 2003; Swain and Cameron, 1999). First, both disability and sexual orientation are social labels; people in both groups have to come out and declare an identity which is outside of the mainstream. Second, both disability and sexual orientation share a history of an oppressing medical model, and both were hunted during history by eugenicists. Third, both people with disabilities and queers often do not share their identity with their families (unlike with race or ethnicity) and thus have to “come out” even in front of them, and fourth, both ability (as opposed to disability) and heterosexuality are presumed “unless otherwise stated” (Swain and Cameron, 1999: 68). This theme will discuss different processes of closeting and coming out that participants in the current study faced during their academic journey.
For queers, coming out is defined as a life – long process of exploring one’s sexual orientation and identity and sharing it with family, friends, co-workers and the world. Coming out is considered as a developmental process, which relates to the processes of recognizing, accepting, expressing and sharing one’s sexual orientation with oneself and others (Cass, 1979). As Cass mentioned, coming out is first and foremost accepting the identity and sharing it with oneself. In some cases, closeting stems from the fact that the person is not ready yet to confront his/her identity, and accept it as a legitimate part of their Section 6 Page 111
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life.
The current theme will describe the coming out process as it is experienced by the participants of this study, students with VI. Three ways of self disclosure will be presented: closeting (self closeting and social closeting) and coming out. Closeting refers to situations in which the person is in the closet. An individual can choose to stay in the closet, or be pushed into the closet by others. These processes will be named here self closeting and social closeting. Coming out refers to the process of self revealing the disabled identity to others. As demonstrated below, this process happens in stages in which the individual chooses when, where and to whom to reveal their identity. Self closeting and coming out Ayelet is a fourth year B.A. student with VI. Her impairment progressed in her mid-twenties and she decided to attend university a short time after it. Ayelet described her experience in the first year: You should have seen me in the first year, I was very scared and skeptical about how to do it in the sense that all of a sudden I had to develop new techniques to learn but also to expose myself, which is something that till I started my rehabilitation process, I had hidden. I made sure to hide it. Maybe I locked myself in, I did not want anyone to know that, I even did not want to hear. I lived in a bubble. My close family also did not know. I built walls around me and locked myself in front of everyone. I was closed, I did not speak.
Ayelet‘s description reflects the experiences of many other students. Attending university is a phase which requires adjustment to a new environment with a flood of new demands. Students with VI have to develop their learning techniques and academic abilities, and also to confront their disability and present it to others: friends, lecturers, support services, administrative staff and faculty, and sometimes even to family members. This act of self Section 6 Page 112
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disclosure changed across time and situations. Ayelet presents a closeting situation. Later in the interview she explains the reason for it: “I am in a position of inferiority, as if something is wrong with me, that I have something unusual.”
Moran, a first year B.A. students with a progressive VI described her avoidance of using a cane throughout the first year. Unfortunately, Moran‘s impairment progressed during the research period, so she was forced to start using a cane. Entering the classroom with a cane, it takes courage! Entering the class almost after a year you learn with them, and not all the students are aware [of the impairment], not because you do not want to [tell], because what? You go with a sign? ... A cane is some kind of statement ... a lot of times people make implications from what is seen. I was afraid of that moment of using the cane, because then people will associate me with the stigma, and I am not [what the stigma symbolizes]. Both of these quotes illustrates that people with VI are aware of the stigma associated with their impairment. Participants in the current study were making choices about how, when and where to present themselves to others, sometimes even struggling about how, when and where to come out about their ‘disability identity’ (Samuels, 2003). The students appear to adapt their mode of self presentation to specific situations. Though Moran came out in front of her classmates in university, she is still in the closet in her hometown, as she describes: I get on the bus [next to the university] with the cane and get off at the station in the city I live in without it. Trying to focus myself in terms of vision, and I cannot walk without the cane. So I am walking very slowly ... it is my hometown station ... and people who know my family. It is really difficult for me. Really. I really want to get to that stage where I will also have no problem doing it there [using the cane in that station]. I would be very happy to get to the day when I just don’t care. Section 6 Page 113
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Another example of closeting is an event that happened to Ayelet on the day the clock was changed to wintertime. Ayelet has night blindness, and due to the time change when she left the class it was already dark outside. She went out of the classroom building and could not see a thing. She knew that there are four steps at the building’s entrance and understood that she would not be able to locate them: “I had the dilemma of asking someone, there was a friend that just came out and it was like on the tip of my tongue but something prevented me from doing it. I am sure that if I asked someone he/she would do it gladly, but again it is just four miserable steps - from a sighted perspective, it’s like, so what?” Eventually, Ayelet chose to stay in the closet and called her brother, who was waiting in his car outside of the campus, to come and help her. Nadav, an M.A. student, lost his sight during the second year of his B.A. Like Ayelet and Moran, Nadav didn’t agree to use the cane: “I refused to walk with a cane, no, no, I could not, the cane was in my bag and I just could not take it out. It was very hard for me, very, very difficult...Emotionally, to take the blindness out was very, very hard. People did not notice my blindness... but it also did not matter if they could see it or not, I could not! I did not digest it...From my perspective to get the cane out was to say here I am and I am blind.”
The process of coming out in the way Moran, Ayelet and Nadav faced it, included a long spell of readjusting to the new situation. Thomas (1999) defines it is a story of changing the self identity. Self identity is a ‘key element’ in what Thomas termed “the psych-emotional consequences of disablism” (p. 48). These participants faced a loss of the self they had before the impairment progressed and had to reconstruct a new self. This reconstruction occurred through and against the society’s attitudes, stigmas and beliefs toward people with VI. Each participant chooses his/her own way of reconstructing the self. Moran had no other option than to come out of the closet and reveal her identity as a disabled person, while Ayelet is still struggling between closeting and coming out, as she described: “It is a kind of paradox, there is a longing to hide but also an impulse to expose.” Nadav spent a year accompanied by a friend to every place till he could not make it anymore:
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This period of time when I refused to use the cane, I could not move anywhere without someone helping me, if it was at the university, at home, with my family, I was not independent, it really, really bothered me... when I was going without the cane I fell and got hit and just like that, I said enough! I do not want it anymore. I realized, I realized it was not coming back, I realized I can not and realized I should start to move around by myself. So I took it out. Orly, an M.A. student who is blind from birth and is identified as blind because of the look of her eyes, described her refusal to walk with a cane during high school: Till the age of eighteen ahhh... me and the cane were not good friends, I could not touch this thing, because I felt that it is the stigma, you see me with a cane so I am blind, although my blindness is apparent, I did not understand it that way, I knew it but I said what? This is a label... so I depended on others, which is a bit stupid from my perspective today. The cane is the only matter which I just could not confront related to my disability. Then at the age of nineteen I had to leave the house for university, a new city, I needed to know new places, to move around, so I had no choice. Samuels (2003: 233) claims that the coming out act is done by people whose “bodily appearance does not immediately signal one‘s own sense of identity.” In Orly‘s case we notice that though her bodily appearance does signal blindness, in her own mind using a cane symbolizes coming out and declaring her blind identity. This case exemplifies how accepting the identity and sharing it with oneself must be achieved in order to accomplish the coming out process. The transition to university forced Orly to come out, to be more independent in her mobility skills, and by doing so this revealed her identity to others.
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Eventually, Orly, Nadav and Moran got guide dogs. Guide dogs are a clear indication that someone is blind, but compared to a cane that connects with many negative stereotypes and stigmas, a guide dog symbolizes strength and competence. This issue was discussed in the last theme.
Social closeting During her studying Orly had to do an internship as a teacher in an elementary school. Orly described a situation in which the school’s principals tried to push her back into the closet: They wanted me to wear sunglasses, claiming that the kids would be frightened by the look of my eyes. I said to the principal that kids have to accept me the way I am, and indeed the kids were very curious and took off my glasses, asking me why are you wearing glasses? So one day I came into school without them, no one was afraid and the kids wanted to see my eyes... the principal said listen, I don’t know if you are aware of it, but your eyes are quite different, it is not really aesthetic and so on. I answered listen, unfortunately I did not look in the mirror today, but on the other hand I don’t think I am a monster. This situation is an example of a social closeting. Orly was asked to hide her bodily appearance, which symbolizes her disabled identity. This attempt to closet Orly’s identity was not successful, but definitely represents the attitudes that society holds toward people with disabilities.
Summary Cameron and Swain (1999, p. 76) claim that coming out for disabled people “is a process of redefinition of one’s personal identity through rejecting the tyranny of the normate, positive recognition of impairment and embracing disability as a valid social identity.” I would like to suggest another explanation for this process as it occurred in the current study. The coming Section 6 Page 116
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out process, for participants in this study, was indeed a process of redefinition of the personal identity, though most of the times it happened due to their need to acquire better functioning during their academic journey. The university environment and its demands sometimes enforced them to come out and declare their identities as disabled. Coming out had a positive impact on the personal identities of the participants, and in performing this act of coming out they were also, unnoticeably, changing the meaning of disability to their surroundings.
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Theme 7: What Kept Me Going On ? External Influences and Internal Forces ___________________________________________________________________________ ”Growth itself is education, and the capacity for continued growth is the aim of education.” (Court, 2004: 53) As mentioned in the fifth theme, none of the research participants dropped out of university during the research period. However, this situation does not represent the population of students with disabilities, who are characterized by high percentages of attrition (Nagle, 2001; Yuen & Shaughnessy, 2002). In Israel, empirical data on university students with disabilities is still lacking in general, and data on students with VI is lacking in particular. As mentioned in the literature review, only four empirical studies have been conducted so far about the situation of students with VI on the university level. All the students in the study found their own way to manage the academic and social challenges during their studies. For some it was a family member, the faculty secretary or a certain lecturer, while for others it was their inner resources or a religious belief. This theme will present the “backstage forces” that helped students with VI along their academic journey. Anderson (1985) discussed the forces that are involved in students’ academic success. Anderson presents a “force field analysis of college persistence” which maps external influences and internal forces, both positive and negative. The current theme will focus on the positive external influences and internal forces that led the research participants to academic success. This theme will present the “backstage forces” that emerged from the data with reference to Anderson’s model of student persistence. Information on benefits of attending university and career aspiration All the research participants mentioned that attending university is most important for them due to the fact that academic education enables varied employment opportunities. Participants were not aware of the fact that in Israel the rate of employment among legally blind graduates is very high 68% (between the ages of 19 – 64) (Berman & Naon, 2004), compared to the employment rate of the legally blind population in the same ages which is only 28% (Smith & Smith, 1996). In spite of this lack of awareness of the figures, all the students echoed the importance of higher education for transition to employment and Section 6 Page 118
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mentioned the fact that they have fewer employment opportunities due to their impairment, for example: I wanted to do something, move forward… since I didn’t serve in the IDF and have vision problems and everything, so I have got to have something which is official. (Hezi) I wanted a degree, in terms of employment... Our repertoire as blind people in the labor market is more limited than sighted people. If you have a degree you have more options. It is really an influencing factor. (Adva) I wanted to learn something which is practical. I wanted it because it was important for me to graduate with something in hand. It was a significant consideration for me. (Maya) The question was not whether to go to university, the question was which department to attend. It is clear that today you have to be a university graduate, in order to work at anything. I chose this department because I really love people and wanted to work with people, and due to the change I had gone through due to my VI. (Eithan) All the participants viewed higher education as a way to upgrade their vocational skills. Klinkosz, Sekowski & Brambring (2006) suggests that identifying studying in university as successful rehabilitation helps students with VI to be able to study and pass their examinations. Interest in gaining higher education for personal development is also one of the internal forces that Anderson (1985) marked as a positive influence on students’ achievement and persistence.
University as an enabling environment - Faculty, staff and support services Though the university environment was thoroughly discussed as a disabling environment in the second theme, some of the participants’ experiences revealed some of the features that turned it into an enabling environment that actually facilitated their studying along the way. This section will focus on the support students received from faculty, staff and support Section 6 Page 119
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services. Faculty support The academic staff can really make a difference for a student with VI. Whether it is through practical help (like meeting the student after class for some extra explanations) or through technical help (like e-mailing presentations to the student before class), this support is crucial. In addition to the fact that students reported that this kind of support was really important for their academic success, they all mentioned that academic staff support made them feel wanted and accepted. As Eithan describes: “One lecturer told me to come to her office after class whenever I need help, she made an effort and was really committed. I got 100 in this course, and it was the thing that made me most happy in my B.A..” Dana told me about one lecturer who permitted her to do the course exam on her own laptop, which enabled her do the exam independently: I spoke with her [the lecturer] about the complexity of the exam and she send it to the learning center in order for them to print it in Braille. She also permitted me to work with my own laptop. I said that if it is a problem I can work with a reader and she said, “We will do it with complete trust in you.” I don’t want to feel like I am the one who made them change the policy, but if she does it from her own good will, and makes the decision herself, I feel fine.
This quote demonstrates how lecturers’ attitudes toward students with VI are being translated into practice which elicits students’ independence and enables their equality in studying. Anderson (1985) stated that lecturers expressing confidence in their students’ potential for success is one of the external factors which influence students’ achievement in a positive way.
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Administrative staff support and support services provision One of the unwritten rules of the university environment is that administrative staff has a lot of knowledge and power. Many of the students in this study learned that sometimes the most helpful support they will get is from the faculty secretary: I know that if I have questions I can also ask the faculty secretary, she is so nice and always helpful. (Maya) The faculty secretary really helped me, her tips, and the way she cared about me made the difference. (Hezi) I came with all of the forms and the secretary helped me to fill them in. She gave me all the information and helped me complete the process in one day. I asked her, “Isn’t there a procedure to go through?” and she said, “There is, but I really want to help you.” (Ziv) Students who were treated by administrative staff in a supportive and sympathetic way mentioned that it really helped them adjust to the university environment and manage the bureaucracy involved with it. All of the students in this study use support services for students with disabilities. Students mostly appreciate help concerning finding readers, accommodations and personal issues. Many of the research participants were satisfied with the support services, but some have critiques about procedures and specific care givers. Administrative staff support and support services were crucial for students, especially during registration periods. This issue will be discussed in the timeline analysis section below. Family support Thirteen of the sixteen students interviewed mentioned the effect of family support on their success. All kinds of family members were mentioned: parents, siblings, grandparents. Students describe this issue as follows:
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I call all the people along the way my angels, including my brother. Angels which my brother sent me at the age of 27 when it happened. [when I went blind] (Ayelet) My parents really support me, they say, don’t work! Our duty is very clear - your job is to study and our job is to make money. Everyone should know his place. (Eithan) Your family constructs your character. Thank god, I have a great family, my parents and siblings... I learned so much about myself through them, it is really empowering. (Dana)
It seems that family support can be divided into two forms, moral support and practical support. Moral support relates to the values that the family holds toward higher education: parents who value higher education and stress its importance bestow on their children these values during their socialization process, which emphasizes intellectual achievement and learning (Anderson, 1985). Practical support includes various techniques by which family members act in order to help their relative to persist in studying: financial support as mentioned above, or technical support in fulfilling learning tasks such as help in reading learning materials, summarizing them and writing papers (demonstrated in the fourth theme). Shlomit was the only participant who reported that her family does not support her decision to attend university. For Shlomit, family support did not form part of the picture, neither in terms of moral support nor in practical support, due to the fact that her view on disability in general, and on her own disability in particular, did not accord with that of her parents: My parents don’t understand why I have to attend university, they wanted me to live with a caregiver and to find some simple job which would not bore me, that’s all. I don’t agree with it. When I left home it was very hard for them, as is the fact that I travel alone. They don’t understand it... They don’t understand that blind people can learn.
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Shlomit, who is the eldest daughter in a large family, felt great commitment to giving a good example for her little brothers and sisters. She mentioned that being a role model for them was very important for her and this really pushed her forward in her academic journey. Even in this case where family did not form any kind of support, Shlomit’s siblings affected her motivation for achievement and persistence in university.
“I have proved that I can do it” - Internal forces All of the participants in the current study mentioned that being a student is a very challenging task which demands a lot of strength, power and inner resources. The experience of attending university and integrating into its academic and social environments really empowered the research participants, who described it as a formative experience: It takes a lot of strength and inner resources to attend university as a blind student. (Adva) I’ve been facing a lot of things lately, I don’t know how I manage to deal with it... I don’t know where these inner resources are coming from, to keep on smiling, be a communicative person...but it’s really a formative experience. (Moran) I’m struggling and it is not easy, there are days of crises but I’m not giving up. I’m not going backward anymore, because I have proved that I can do it, with all the difficulties, I have inner resources... Today I am a university student, which in the past was a taboo for me, impossible. If I manage to do it then I can do almost anything. (Ayelet)
During the interviews students revealed that social success is one of the desired outcomes of the university experience. This factor was highly valued by the research participants. Meister (1998) also found that despite the fact that for students with disabilities attending university is especially stressful, their priorities also include social communication, which they consider as important as studying. Section 6 Page 123
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Some of the students demonstrate great will to show themselves, but also others, that they are capable and competent, that they are achievement-oriented, and can fulfill themselves and their goals. Being a student is an important component of their self confidence: Today I’m a student, who proved to herself that she can cope with it... Who can improve her quality of life despite the impairment, the difficulties and all of the energy which is required. Ayelet found her inner resources... marched on and didn’t give up. (Ayelet) I see myself today as a normal person, in every aspect. To survive in these two extremely difficult departments and not only to succeed, but to be the one who students asks for his notes and ask him questions . I split the blind population into two: the lions who fight and the weepers who don’t do anything but cry. You’ve really got to have a lot of strength and nerves in order to succeed here. I discovered that during my studying, I couldn’t even imagine how powerful and competent I am. (Dvir) Today I have proved that I can do it, I can meet the demands I have set for myself, but that’s not all. I do things stage by stage. Each time I define another goal at the top of the pyramid - first the B.A. and then the M.A. and now I have to find another goal. (Rachely) It was a great experience, one of the most amazing experiences I have ever had. Because I have proved firstly to myself but also to others that I can, that I am competent. There was a challenge and I succeeded in passing it, and even enjoyed it. (Orly) Once again we can see that one of the motives for success is the student’s will to be like the other students, and to be included in the mainstream. This is consistent with the two narratives which were presented in the first theme. Those inner resources suggest an emancipating solution to the tension between being a student and being a person with VI.
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Nadav, who lost his sight in the second year of the B.A., is now a doctoral student. Nadav summarizes his experience of vision loss during his academic journey and the way it affected his identity: As a sighted person you walk around the world and the transitions between different fields of existence are light and easy... and then suddenly this world is closing, all of this huge space, that was once open is now closed, visually... You are in the dark...all the thoughts and moods, everything turns in... every idea of what’s happening is being internalized, into the soul, into your inner world. It is like a vacuum that sucks everything in, and I think that it creates two things. The first is a lot of pain and difficulties, like technically - how will I manage to do things? How will I walk? The second thing that happened was actually a much stronger connection to my inner world, to my desires, I am closer now to myself... today it is much more noticeable, this strong connection, to our essence, to depth, to more significant and important things. My vision is now clearer, it is less dirty with all the confusing visual space surrounding us... I found out how distracting vision can be and understood that this crisis is a very, very strong source of growth. It is like you're falling into this crazy regression from good, strong ability into a lack of capacity, and then this gap creates a huge vacuum in which you can get new things, and it becomes a potential for growth.
Nadav had managed to examine the crisis he was going through and to suggest a powerful and empowering interpretation for it. Though most of the research participants were not able to come to this conclusion and pronounce it directly as Nadav did, this theme demonstrates that participants did perceive their academic journey as an opportunity for growth.
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Religious belief Four of the students interviewed are religious (Jewish). Three of them mentioned that belief in God and praying helped them in times of difficulty along the way: Humor and optimism but mostly strong belief, that's what pushed me along the way. I always say that it is temporary and that’s what pushed me to get my B.A. and than my M.A...I have proved that I can do it. (Racheli). When I pray I really feel empowered...prayers make me feel good, optimistic, happy...religious songs really makes me feel strong. (Moran) Dvir, who does not identify himself as religious, also presented in his interview a perception, which was echoed by other participants, about the fate of being blind and its implications for his life: When God takes one thing he gives you another. You know, it is written in the bible, God takes away and God gives. Everything has a reason. If someone was born blind, it might sound bad, but there’s a reason for it... this person has some destination in life.
Other participants also shared with me their thoughts and perceptions about their blindness and the reasons for which they got it. It seems that students were relived by the thought that they were chosen to be blind since they have the resources to face it. This fatalistic belief is another internal resource which students used in difficult times and crises.
Summary This theme presented external forces and inner resources which help and support the current research participants accomplish their academic journey. Anderson (1985: 56) stated that “individuals who take personal interest in students and relate to them as persons can promote persistence” in several ways. This statement was reconfirmed in the current research, in Section 6 Page 126
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which faculty, staff, support services, friends and family affected the students’ motivation for persistence. Borland & James (1999) claim that going to university had implications for the construction of the personal and social identity of students with disabilities. This theme demonstrated how the experience of attending university was a formative experience for the research participants, which empowered them, confirmed their identity as competent and emancipated them. This experience forced the participants to confront their disability and integrate it into their identity. Though students face many difficulties during this academic experience (as presented in all of the themes below) they managed to achieve a positive outcome which stressed their abilities, resources and competence.
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Figure 2: The seven themes which emerged from the data and the interactions between them
The Academic Journey of University Students with Visual Impairment
The Academic Journey of University Students with VisualSocial Impairment University as a disabling environment University as a
relationships and the quest Social for personal relationships identity and the quest
disabling environment
Impairment effects
Impairment effects Between independence, dependence and interdependence Between
independence, dependence and interdependence
Between Normalizing Disability and Between Disabling Normalizing Normalcy Disability and
Disabling Normalcy
External influences and internal forces
External influences and internal forces
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for personal identity
Closeting and coming out - on the way to selfdisclosure Closeting and
coming out - on the way to selfdisclosure
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2. Time Line Analysis The current research is a longitudinal study. As mentioned in the methodology chapter, students were interviewed during two years of their studies. Each year of university is different from the other in its challenges, demands and tasks. For instance, the most difficult task of students in the first year was adjusting to the new environment and getting to know and understand the university’s system and its rules, whereas for students in the third year the most difficult task was to submit their seminar work, which required searching academic materials in libraries and electronic databases, reading and integrating materials into a paper. Though the research intent was to focus only on two dimensions of the adjustment process (academic and social), while analyzing the data it became clear that “natural” adjustment would have to be another dimension of the analysis. This is due to the fact that many of the characteristic of entering university relate to the period of time when a young person is transferring from adolescence to young adulthood (Erickson, 1968).
Since the study lasted only two years, I had to combine participants’ experiences in order to make a continuous timeline that represents the period of time from entering university till graduation, and through this created an artificial timeline. This life period of being a student is a very demanding and overwhelming period, which forces individuals to confront their disability and integrate/crystalize their identity both as a student and as a person with visual impairment. The current section describes this process with reference to the time factor, and will present the unique characteristics of different years of studying.
First year of studying Students described the first year as a year that was dedicated mostly to adaptation to the new environment and getting to know their strategies, skills and methods of functioning in it. As they described it they were “learning how to learn”. Students dedicated a lot of time to adjusting to the academic demands, learning the rules and norms of university, but also to their new status as independent grownups. In the fourth interview I asked the participants to give a brief title to each year of their studies in university. The responses to this task, creating Section 6 Page 129
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a “visiting card” or a title that summarizes each year’s experiences (Kacen, 2002; Lieblich, Tuval-Mashiach & Zilber, 1998), were almost identical for all participants.. Students titled first year as following: Adjustment, getting used to, shock, concussion... I was busy with adjusting and understanding what is happening around me. (Maya) First year was a total panic, one of the most difficult years in my life, I never cried so much as in that year, it was a nightmare. (Tal) I would define first year as getting to know the characteristics of academic studying, getting used to the demands... The first year model is experiencing difficulties and overcoming them. (Dana) The transition to higher education is a major life change for every student which entails difficulties handling stressors which are associated with this transition (Friedlander, Reid, Shupak & Cribbie, 2007). The next sections will present specific issues that the research participants described regarding their experiences during the first year. The registration process The registration process is one of the student’s earliest experience s of life in the university. The first step of registering for university and organizing the semesters’ timetable was described by most of the students as a frightening experience. In Israel, the registration process could be done in one of two ways: 1.
Internet registration, in which the students register for courses on the university’s website.
2.
The traditional route, using registration forms - in which students have to physically travel to the university and obtain signatures of the faculty secretaries.
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Both forms of registration were described as inaccessible by participants in the current study: I never really understood what university is, and then suddenly I had to arrange my timetable...I sat down and looked at the courses list and asked what the hell do they want from me? I didn’t understand a thing, really, nothing. I felt like I was thrown into deep water without a life jacket, no one helped me or told me what I should do and how I could learn how to do it. This idea that I should understand everything, know how it works, without any help. It was really hard. (Tal) I built my timetable all by myself. I made such an effort that I even fell down the stairs. I walked through places I don’t know, no one helped me, or accompanied me. I made it on my own. This is one of the most important things for a student in order to adjust to university and to make the most out of the studying. (Jonathan) Registration was the first time when I confronted my visual impairment at university. You have to go there, do that, bring this form. Luckily, I’ve learned, after a process I went through, to talk about my impairment openly. That’s why I discussed it very explicitly and told the secretary: listen, I have a problem seeing, please give me more instructions, don’t rattle me, tell me exactly where to go. (Eithan) A lot of the knowledge which is required for a new student is hidden knowledge (the unwritten rules of the academy). As mentioned in the seventh theme, staff and family members can make the difference for students in that stage. Some of the students mentioned that the process was much easier and smoother for them since they were assisted by kind registration officers or a sibling who is also a student. These people have access to the hidden knowledge that the research participants are missing, and thus enable the students to go through this process in a more accessible way. Levi (2002) defined constitutional adjustment as one of the five dimensions of adjusting to university. Constitutional adjustment refers to Section 6 Page 131
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acquaintanceship with the bureaucracy and administration procedures of university and other service procedures as demonstrated in this section and the following one. Facing the university as a system Another theme that repeated in the interviews was the students’ feelings of smallness and loneliness when coping against a big and threatening system, as the following quotes demonstrate: I didn’t understand the requirements, and I felt all alone against something that is big and threatening. This feeling that you have to face everything, the way you face it, how to not feel so weak and tiny. How you cope with the system and understand what they want from you even when you don‘t really understand....that’s what seems to me the hardest thing in the first year. I felt so lonely... Facing this system, which is so big and no one really pays you any personal attention... they all expect you to understand everything without anyone telling you anything, and require so much without even telling you what is required. (Tal) First semester was an adjustment semester... intentionally I didn’t take too many courses, so
I could be free to
establish my independence too, adjusting to the dormitory, purchase my independence, and not least, establishing my social life in the city. First semester, though academically sound easy, was really difficult for me. (Ziv)
This experience could be changed easily to a more pleasant, available and accessible one if universities policy makers would recognize this initial experience and accommodate it to the needs of students with disabilities. It seems that students with VI require a lot of accompaniment and guidance during their first period in the university in adjusting to the new environment and learning to fit its demands. Section 6 Page 132
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Shlomit faced many difficulties in her first year in university, due to which she stopped studying for a year and registered for another university in which she was studying when the current research began: First year was most difficult for me not academically but this whole issue of adjusting to the university environment. It is a chilly and cold university, I didn’t know who to turn to. Who is doing what? And no one came towards me, in the middle of this year I decided to quit and at the end of this year I took a year off. This first year in university was really traumatic for me, so when I registered here I was really afraid because this experience was a failure for me, I was really afraid of dropping out again. This quote demonstrates the importance of the university environment to students with VI. Though Shlomit was capable and could meet the academic demands she could not integrate into the university environment because of her unfamiliarity with it. Like Shlomit, Ayelet also stressed that she needed a lot of technical and moral support during her first year. Ayelet claimed that, “Just like entering university is difficult for sighted students, it is even more so for someone with visual impairment which restricts you, and you do not know, metaphorically and physically, you just do not know what is standing in front of you.” This description of the student who does not know what is standing in front of him, both metaphorically and physically, is very sharp and significant. Students with VI need a lot of orientation in order to manage university, academically, socially and mentally.
Natural adjustment - Leaving the parents’ home As mentioned before, attending university happens during a period of time when a young person is transferring from adolescence to young adulthood (Erickson, 1968). In addition to fulfilling the academic demands, individuals have to face other tasks, such as leaving the parents’ home, establishing a romantic relationship, choosing a vocation etc. Ziv discussed these issues in his first interview: Section 6 Page 133
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I must say that one of the things that allowed me to make the most of my student period of time, and I’m not talking about the academic point of view, but in terms of establishing my independence – was to leave home, feel what it is to live in the dorms, acquire these skills, of being an independent adult also socially- wise. It was a very important experience. Because you know what? Probably somewhere it is written that what I did not get during my military service, I should get in university. It was very difficult at first, but this difficulty was relieved as the semester progressed.
Borland & James (1999) also mention that non academic concerns, such as housing and social activities, are practiced during this period. Good practice in these areas affect the independence of students with disabilities. Some students reported that although this period is fraught with many difficulties and critical decisions regarding adjustment, it is a period of transition to independence and growth. As Orly described: “At the age of nineteen I rented my first apartment, we were two blind girls and another girl who is visually impaired. Today I am a bit sorry that I wasn’t there for most of the time (many times I went to my parents house), but when I did stay there I really enjoyed it.” Moran also said that during the first year she learned what it is like to be a student: “It is fun, totally fun, this freedom. I learned so much about myself and also drew conclusions for the second year.” First year conclusions - a summary from a mature perspective All the research participants indicated that first year experiences taught them how to deal with the university system and thus facilitated their experiences in advanced years, as Tal summarizes: Now I can examine in a more appropriate way the system's demands and also my demands of the system. It took me one year to understand this. It is true that it didn’t affect my grades, it cannot be seen and no one would have guessed if I didn’t point it Section 6 Page 134
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That there was no help, that I learned to take exams
without even knowing how to do it, that I wrote my papers all by myself, no one like... it is right that for a regular student it sound like well o.k. everyone sits and writes alone, but when you are visually impaired and you need the text- to- voice software to read for you, and it doesn’t... so it is a bit difficult. But now I know...how things work. Once again, not completely, every year I have this fear of, wow, I have to arrange my timetable, and it is difficult because it is such a big system, but I have really improved. On the one hand this year was a crisis but on the other hand it was mostly about learning. Jonathan stressed that the first year was most important to him since it caused him to take responsibility for various fields of his life: I think this year has helped me, since there were a lot of areas I was supposed to be responsible for, be independent, do things that I haven‘t done before, and I did this. I filled out these tasks and let's just say it's good. I had concerns that I would not be able to pass the exams, I was very excited before the first test in the first semester. Very. I was so afraid.... But after I did it I saw it was no big deal and moved on. These quotes demonstrate the importance of the adjustment to university in the first year. This adjustment process includes more then fulfilling the academic demands, but also a lot of personal learning about functioning as an adult who is responsible for his life in every aspect. Second year of studying Research participants’ responses to the “visiting card” task mentioned above were also very similar. Jonathan surprised me with a very creative answer and named this year, “On the beach with no popsicles.” When I asked him to explain he answered: I am at the beach, free and liberated. In the second year you are more available and free. But there are no popsicles on that beach. Meaning that I have to go back and bring them, buy them Section 6 Page 135
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somewhere, get out and leave the beach. I have to pass these exams. So eventually you learn how to do it. This year is easier because I know what is expected and what is going to be. What are the amounts of learning materials and what is going to happen, we have already gone through it in the first year, so there is nothing to be excited about.
Maya, Dana, and Tal also gave similar answers. Maya referred to the fact that in the second year she was more available for other things besides studying. As she explained it studying in the second year is more like a routine, thus it freed her for other activities. Dana also claimed that second year is much like a flow: “In the second year almost everything flows/ streams, it is clear that there are difficulties, but you already know the requirements.” Tal also mentioned that, “It is quieter now. Less concussions, more flow.” Since students experienced the first year events as shocking and surprising, they were very busy with adjusting to the new environment and learning its rules. In the second year students were already familiar with the environment and its rules and thus experienced great freedom and availability for fulfilling other tasks. One of these tasks is improving their living conditions.
Improving living conditions Through the majority of interviews that were conducted with students in their second year of studying and beyond, it was found that most of the students moved to more convenient accommodations in that year. Ziv, Tal and Maya describe how this affected their lives: Suddenly I found myself with two great roommates, who are willing to assist me, who are accepting and supportive. It was so nice that all of a sudden someone is describing the view from the window, including the female students who are passing by, you know like men talk, which I didn’t have before. (Ziv) I could have stayed in the dorms for another year, but I am so Section 6 Page 136
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happy that I didn’t. [My new apartment] feels like home. I can even cook now, without being worried about people telling me things. (Tal) Another bright side of the second year is that I moved to a new apartment, though it is still in the dorms, now I am living with one of my friends. It is really fun, such a homey atmosphere... It was blessed and meaningful. (Maya)
These quotes demonstrate the importance of the ‘dorms’ experience for the research participants. Many of the participants who moved to a new apartment did it with a friend (visually impaired or sighted), and discovered how convenient and calming this experience can be. It is clear that better living conditions could also lead to better academic adjustment. Thus, this finding is especially interesting because it can be implemented in the field. It would seem that participants in the current study were not paying attention to their living conditions during their first year since they had other tasks to deal with. I assume that only after the first year shock of adjusting to the university environment could students manage their lives more peacefully and gain more control of their lives, thus they were able to make choices about their living conditions.
Complicated learning tasks Despite the fact that over time students participating in the study reported better adjustment to the academic system, one issue that was mentioned by many participants throughout the research period was the increased level and complexity of academic demands: Second year is easier because you are familiar with the demands, but it is more difficult since the requirements are much higher. You are more independent, you should know how to learn, how to fulfill the lecturers’ demands. (Dana) The second year was really nice till we reached the stage of writing papers. You pretty much think you understand the system until that stage in which someone shuffles the cards. Section 6 Page 137
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Writing papers. It really shocked me, it is hard for me to write papers... And I know that it is not going to get easier, it will just become more difficult because the dimensions of the work grow. This process of writing papers, my papers are written in blood, I write, delete, not happy ever. (Tal) Tal also discussed the difficulties in writing and submitting papers due to the impairment effects she is facing and her dependence on others. These difficulties were thoroughly discussed in themes three and four. Apart from this, Tal also mentioned that each paper or seminar assignment she had to submit forced her to speak to the lecturer and confront her disability, which sometimes felt uncomfortable.
While most of the participants mentioned this issue only during the second year of studying, Moran was the only participant who described it in the second semester of the second year. In her opinion, she was facing more difficulties fulfilling the academic demands due to two causes: First semester exams were much easier than those of the second semester. I think that it has to do with the fact that you have the sense of one foot out, you really want to get to the summer vacation. Usually, people claim that the first semester exams are much difficult, because you don’t really know how to do it. Well, they were difficult but my motivation was much higher then. This semester is much more complicated, it is more stressful, more loaded, many courses, quantitatively but also qualitatively.
Moran referred in her interview to the fact that as time passed she was less motivated and really needed a break in order to gather her resources and start over again. This feeling was echoed by other participants as well.
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Studying in university as a maturation phase - Managing disability Goode (2007) claims that students with disabilities take up different positions during their studies. At first, they are busy with “identifying and employing strategies” which allow them to start studying, and only then they are able to “give their energies over to their academic studies per se” (p.47). This analysis has demonstrated these different positions. The last two questions in the interviews that were conducted during the current research were: •
What is the most significant thing you learned about yourself during this period?
•
Did you learn something new about yourself as a person with VI?
Answers for these questions showed that the research participants were going through a maturation phase in which they learned a lot about themselves both as students and as persons with VI, as the following quotes demonstrate: You reveal the strength to overcome things which you did not think you have. I think that every person has this phase in which he says “There is no chance that I will be able to make it”, and then he passes another obstacle. And then he does it over and over again... I am happy that I did it... and now I believe that even if I face frustration again, I will not give up... Even when it cannot be seen from outside, I can overcome, and there are good people in this world who always help. I don’t know whether to call it growing up or sobering, there might be a thousand and one names given to this process. I am feeling more mature... I should go on and if it is difficult so it will be difficult because this is the way it should be, and not because I was wrong [in choosing studying in university].(Tal) As long as my blindness is only in my eyes, physically, as long as it doesn’t control my cognition, I don’t have a problem with it. I think that I fulfilled my potential here, also in terms of acquisition of independence, both socially and academically. (Ziv) Section 6 Page 139
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I learned that I can get along and that there is no shame in asking for help. Once I felt bad, as if you have that thing when you are blind, you are trying to be super duper independent and that no one will think that you are not independent or feel sorry for yourself. You are afraid to admit the difficulty, because if you would, then it will be linked with your disability. I learned not to be ashamed, everyone does it [depend on others] and people feel free enough to ask me things as well. (Dana) The most important thing that I learned is to deal with problems and difficulties, not only academic difficulties. With the visual impairment and the stressful situation of being a student, I learned how to face difficulties and solve problems. Not all at once, but not escaping them as I used to do before. Now, when I have to deal with something I take responsibility. I take responsibility and solve things straight to the point, immediately and not waiting for tomorrow. (Jonathan)
Moran is the only student who faced a regression in her visual ability during the research period. When the research began Moran was visually impaired and by the time it ended she was almost blind. The process that Moran had gone through was full of difficulties regarding her changing abilities and the way it affected her academic functioning. In spite of the rocky road that Moran had gone through, she was empowered by the experiences she went through studying in university: Suddenly I felt that I can adjust to every place, and that I can get along with people...I exercised a lot of abilities in here, which I didn’t have the chance to do before. I learned that I am not giving up. I am fighting. When your vision regresses, you should readjust to the environment in which you are functioning. Here, in university, I am far away from my family, far away from home, from my friends, and it is really demanding. So I had to get along under pressure and with all the demands. Throughout the last semester something changed in me, in my feelings. I told Section 6 Page 140
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you, I had very tough courses, but the company suddenly changed... it gave me a different sense of learning. It's another aspect which is slightly reassuring. I think that my acquaintanceship with more people made me get a lot more help from friends, not only from the receiving side... it balanced me and reassured me as well. No doubt. By attending university the research participants gained many skills, academic, social and personal. By doing this they earned freedom, autonomy and independence. Though the experiences that students faced during their studying were complicated, disabling and sometimes even oppressive, students managed to reveal the strength to overcome these experiences, overcome obstacles and solve complex situations. This finding reveals the way in which students were empowered by this formative experience and also by their participation in the current study. The research participants were emancipated through the research process which forced them to stop and examine their lives in general and their experiences at university in particular.
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Part V: Conclusions and Implications
___________________________________________________________________________
The purpose of this study was to investigate the experiences of university students with VI regarding their academic and social adjustment. Three questions guided this research: 1.
How do individual student characteristics shape the nature of their academic journey?
2.
How do environmental factors impact on the experience of university students with VI?
3.
How do disability and impairment effects impact on the experience of university students with VI?
The data presented throughout this dissertation are drawn together in this concluding chapter. The first section of the chapter summarizes the experiences that were described by the participants in the current research with reference to Revenson & Stanton’s (2007) model of adjustment to chronic illness. The second section focuses on the individual characteristics of the students’ experiences, and the third section presents the environmental factors that influenced these experiences. The fourth section deals with the impact of disability and impairment effect on these experiences, and the last section summarizes the academic journey as represented by different levels in the current research.
1. Experiences of University Students with VI Regarding their Adjustment Process As mentioned in the methodology chapter, one of the underpinning principles of this research analysis is the affirmative perspective. Drawing on the social model of disability and based on the research findings, I suggest that the adjustment process of university students with VI is a whole that is greater then the sum of its parts. From this holistic perspective, it can be argued that though participants in the current study faced many difficulties and barriers (personal and environmental) during their academic journey, these experiences as a whole coalesced into a positive formative experience which had broad implications for the participants’ lives (as presented and discussed throughout the seven themes and the timeline Section 7 Page 142
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analysis). Jonathan, one of the research participants, titled the second year of studying in university “on the beach with no popsicles”. This wonderful quote supports and reinforces the finding that attending university is generally a positive experience for students with VI. Though sometimes the waves are too high, the salty water burns the skin and the touch of the sand itches, and though sometimes jellyfish prevent you from going into the water, even when you cannot see the great view or the sunset, the beach is after all a fine place, especially for Israelis. But Jonathan’s beach, like the higher education institutions, is imperfect since there are no popsicles at that beach; it is not fully accessible. In order to get them, Jonathan and other university students with VI have to make special efforts to overcome barriers and to adapt. This inaccessible environment, which was presented in the second theme as a disabling environment, is the context in which these students’ adjustment process took place. In spite of the fundamental differences between visual impairment and chronic disease, I have chosen to frame my discussion employing the model of adjustment to chronic disease (Stanton & Revenson, 2007). Though today it is clear that blindness is not a disease which can be cured, and visual impairment is a permanent condition to which individuals should adjust (Jenks, 2005), I found many similarities between these adjustment processes, which will be discussed below.
Stanton and Revenson (2007) present in their model of adjustment to chronic disease, a number of reasons for evaluating positive adjustment. These reasons can be applied to the adjustment process examined in the current research, and are consistent with the social model of disability. First, positive adjustment represents more accurately the experience of most individuals with disabilities and chronic disease. Second, focusing solely on what is wrong will result in limited understanding of the adjustment process. Third, different coping strategies are related to positive and negative indicators of adjustment. Fourth, the social construction of disability, and finally understanding the environmental, social and interpersonal dynamics of individuals who adjust well to disability, may enhance our ability to specify protective factors.
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The linear and spiral pathways of the adjustment process As discussed in the findings chapter, studying in university is a major life transition which necessitates adjustment in multiple life domains. While attending university students were facing several parallel processes of academic, social and natural adjustment. These processes emphasize the dynamic nature of adjustment, which is a “process that unfolds over time” (Stanton & Revenson, 2007: 204). The timeline analysis demonstrates how various issues regarding different life domains were taking place during each period of this dynamic process. While in the first year students were dealing mostly with learning the new system they had entered and its rules (both written and unwritten), in the second year students were more available to deal with issues regarding their living conditions and social activities. This process reminded me of Maslow's hierarchy of needs (1943) which is portrayed in the shape of a pyramid, with the largest and most fundamental levels of needs at the bottom, and the need for self-actualization at the top. The basic four layers of the pyramid contain what Maslow called "deficiency needs" (D-needs): physiological needs, security and safety, friendship and love, and self-esteem. At the top of the pyramid, above these four layers, comes the perceived need for self actualization (termed B- needs, as for being needs) which was described by Maslow as “the desire to become more and more what one is, to become everything that one is capable of becoming” (1943: 382). Maslow also called this level ‘growth needs’ since these needs do not stem from a lack of something, but rather from a desire to grow as a person. Though many have critiqued this hierarchy throughout the years, I agree with the distinction between D-needs based on maintenance of the organism, and B-needs which are based on growth. This distinction and ranking of needs is very similar to the distinction and ranking of the issues that student discussed throughout the interviews regarding their academic journey. Students first dealt with their basic “deficiency” needs such as registering at the university, setting up the timetable, finding personal tutors and submitting a request for AT devices, and only afterwards were they able to deal with more complex issues such as social relations, living conditions and other extra curricular activities. This distinction is also an analogy for the shift from the medical model to the social model, since the medical model defines Section 7 Page 144
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disability as a deficiency or abnormality, while the social model led to the emergence of disability as a positive identity. Accordingly, people who identify with the medical model are driven by their d-needs (will work to eliminate the deficiency), while people who identify with the social model will be driven to explore their being and growth which Maslow phrased as “the desire to become more and more what one is, to become everything that one is capable of becoming”.
Stanton & Revenson (2007: 207) claim that due to contextual factors adjustment is “neither linear nor lockstep”. Some of the critiques of Maslow’s hierarchy claim that fundamental human needs are non-hierarchical (Max Neef, Elizalde, & Hopenhayn, 1991). While summarizing the current phases of the adjustment process I revealed that although some of its components occur in a linear, hierarchical order, other are spiraling, going back and forward, going on and off the stage as the setting changes. Stanton & Revenson (2007: 207) claim that changes in the individual’s life create “circuitous pathways”. As some of the processes the research participants went through have exact starting and ending points (such as registration, leaving the parents’ home etc.) others are experienced repeatedly (such as self disclosure, taking exams, dependency on others etc.). Therefore, I claim that the adjustment process of students with VI includes both linear and spiral pathways.
2. Individual Student Characteristics which Shape the Nature of their Adjustment Processes Stanton & Revenson (2007) claim that many adjustment processes are characterized by heterogeneity rather then homogeneity. This has to do with the fact that each person examines his/her adjustment from a different perspective at different periods of time. Though many experiences described by participants in the current research have a lot in common, they are also diverse in many ways. The adjustment process of each student starts and ends at a different situation, time and place. However, the findings that emerged from the data suggest some common dimensions which affected this process.
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The most significant issue that students dealt with during their studying was their social location on the continuum between disability and normalcy. However, this location had changed throughout each of the research interviews, as well as throughout time. A holistic analysis of the interviews reveals that most of the interviews have a common structure. At the beginning of the interview, when asked to tell their story of being a student with VI, students discussed mostly the similarities and the differences between them and the sighted students, as presented in the first theme. This theme, which was revealed as the core category, presents two complementary narratives: “normalizing disability” and “disabling normalcy”. These narratives are a result of the struggle that students with VI faced during their lives, while trying to fit in and be included in the mainstream, into the non-disabled society. These two narratives stem from the values and perceptions that people with disabilities have internalized during their entire lives. These values reflect a way of thinking that emerged from the medical model of disability, which sees the person with the disability as the other, and placed responsibility for the poverty and exclusion of disabled persons in their own hands. Students were accepting this responsibility and trying to be included in the non-disabled society by fitting to its norms. This environment includes the university as a system (human environment such as staff, faculty, support services and physical environment), peers and friends (with or without disabilities) and family members. This environment led the students to the self-discovery of how and where they are positioned in relation to all of these factors.
As the interview progressed, and in parallel to the progression of the academic journey, students began to understand that they are not the only ones who are responsible for their exclusion. Students revealed that they are struggling with an environment which is not always accessible for their abilities and needs, which sometimes involved facing stigma and stereotypes. Only after this phase of self discovery were students able to negotiate their identity, a negotiation which led to the emergence of their disabled identity.
At this stage students started to recognize that their struggle against the disabling environment taught them mostly about their internal resources, which finally led them into growth. Student learned throughout this journey, as well as throughout interviews, many Section 7 Page 146
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lessons about their identity: they managed to transfer from independence to interdependence, learn the skill of asking for help without having to reduce their sense of self, accept and manage the impairment effects, develop social relationships and even be socialization agents for others, come out of the disability closet, and reveal their internal forces. Individuals who succeed in developing clarity about their disability, manage to appreciate and reconcile with this identity. At the end of each interview I presented four identical questions: 1. Do you think you are a successful student? 2. What (in your opinion) is success in university? 3. What (in your opinion) is failure in university? 4. Describe yourself briefly (in a few sentences) as you see yourself today at this point in your life.
Though students described many difficult experiences which occurred throughout their studying, all of the research participants claimed, while answering these questions, that they are successful students and that success, for them, is combined both of academic and social success. This might be one of the ways in which the current study empowered the research participants, since answering these questions demanded that they reflect on their experiences and summarize them. When doing so, students understood that though attending university is a stressful and complicated experience, sometimes includes facing discrimination, oppression and disablement, when summing up these experiences, attending university as a whole was revealed as a positive formative experience. Once again this experience reconfirms the Gestalt principle that the whole is greater then the sum of its parts. This complicated process of adjustment converges with the internalization of the disability and feeling safe and secure with this identity. Some of the students started this journey while they were closeted and trying to pass as nondisabled. The journey influenced their decision to come out of the closet, confront their disabled identity and crystalize it. Other students, who started this journey with a sense of their disabled identity, managed to fully internalize it and understand its implications for their Section 7 Page 147
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lives. Students had to develop self disclosure skills and strategies throughout their academic journey in order to integrate their disabled identity. Students had to practice these skills from the moment they register for university (as some have to submit a request to the exceptions committee), in the stage of organizing the timetable, attending the courses and taking the exams. These skills and strategies are reflected in readiness and willingness to disclose and reveal information about oneself, not only to others but also to oneself, specifically information about the impairment and the way it affects the individual’s functioning. These skills are related to the degree of acceptance of the disability.
At the end of the process of both the research and the academic journey, students gained understanding about disability as socially produced. Even though students did not learn directly about the social model of disability, the model was revealed through this journey. Shakespeare (1996: 99) claims that identity “connects the social and the personal and involves the individual putting themselves in a collective context”. Both the academic journey and the process students were going through during the interviews mark a shift between the personal and the social. This shift, once again, is an analogy to the shift from the medical model, which locates disability as an internal problem of the individual, to the social model which locates disability in the interaction between the individual and society. 3. The Impact of Environmental Factors on the Experience of University Students with VI The adjustment processes of students with VI as presented in the current study, like all adjustment processes, are embedded in context (Stanton & Revenson, 2007). In the current study this context refers to the way disability, and specifically VI, is represented, misrepresented, and underrepresented in Israeli society in general and in higher education institutions in Israel in particular.
This section relies on Mor’s (2011) analysis of three dimensions by which disability is socially and judicially constructed. According to this analysis and with reference to the current study findings, three issues will be discussed: the physical environment, the social Section 7 Page 148
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environment and the allocation of resources and social services. The physical environment - The way in which the physical environment is constructed and designed to exclude people with disabilities and prevent their participation as equals in society (Mor, 2011). The university environment is not only designed for non-disabled students (as demonstrated in the findings), but also for non-disabled faculty and staff (Graduate students with disabilities work group, 2010). In the current study the physical environment was mentioned only a few times, regarding inaccessible signs, inappropriate lighting levels in classrooms, or inaccessible access roads (in the dorms or the campus). However, this dimension interacts with the next dimensions, since when the physical environment is not accessible the student is less able to meet the academic demands and function as an equal in university. The social environment (includes both non-disabled and disabled people) - this dimension reflects the attitudes, stigma and stereotypes society holds toward people with disabilities. Disabled people often experience a negative, hostile and disabling environment due to misconceptions, stereotypes and stigmas (Mor, 2011). This environment may not only cause inconvenience but also discrimination and oppression, as discussed throughout the findings chapter. This social environment is one of the foundations that led participants in the current study to the inherent question regarding their identity. Allocation of resources and social services - appropriate social services enable addressing the needs of people with disabilities, and promote the structural change which is required in order to shift the responsibility to the society (Mor, 2011), in this case to higher education institutions. In the current study, students described many resources and social services that are supposed to support them during their studying (The NII, Aleh Foundation, Dean of Students Unit for Students with Disabilities). However, the provisions received from these sources did not fit the needs of students adequately, regarding accommodations, tutoring (both the tutoring hours and its budget) etc.
Another dimension that should be added to the three dimensions mentioned above is the academic environment. Academic environment includes every aspect of the learning involved with attending an educational institution: learning and reading materials, lectures, lessons and Section 7 Page 149
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practices, exams, term papers and thesis and dissertation of graduate students. All of these levels should be accessible for students with disabilities, starting with the presentation shown by the lecturer in class, through accessible learning and reading materials and finally equal evaluation and testing for students with disabilities. As seen in the findings, many of the aspects of this academic environment are still inaccessible for students with VI. The definition of accessibility as presented in the Israeli “Equal Rights for People with Disabilities (Amendment No. 2, 2005) is: The ability to reach a place, movement and orientation in it, using and enjoying service, or receiving information that can be produced in a place or service, or learning about such information, using facilities and participation in programs and activities that take place in them, as equals, respected, independent and safe.
The current research findings show that though physical, social and academic environments endeavor to be accessible for students with VI, they do not embody the criteria of equality, respect, independence and safety.
4. The Impact of Disability and Impairment Effects on the Experience of University Students with VI - Identity Formation through an Academic Journey As mentioned in the literature review, the social of model of disability was critiqued due to the rigid dichotomy it creates between disability and impairment, or as Shakespeare & Watson (2002: 6) phrased it “We talk about disability, we don’t mention impairment”. Many scholars claim that the social model denies the individuals’ experience of the body and neglects the fact that impairment plays a key role in the politics of disability in the lived experiences of people with disabilities (Garland - Thomson, 1997; Hughes & Paterson, 1997; Morris, 1991; Swain & French, 2000; Thomas, 1999; Wendell, 1996).
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Due to this critique, the current study analysis was done with respect to the extension of the social model, which claims that disability is more then socially produced, but is also affected by the causal role of the impaired body. Morris (1991) stresses that there is a difficulty in reconciling the reality of impairment and the lived experience of disability only with the social model perspective, since it ignores this reality. The current research has tried to highlight this reality by incorporating the students’ voices. I decided to employ the terminology of ‘impairment effects’ created by Carol Thomas (1999). Impairment effects are limiting aspects of living with impairment that are not created by society; they are a direct result of being impaired.
Davis (2006b) presents the question “If all identities are socially constructed or performative, is there a core identity there? ” Throughout the discussion I have presented many similarities between the disabled identity and other minority groups identities, such as ethnic identity and queer identity. All of these identities are more then a simple “biological stamp” upon the individual, and are related to political forces and cultural influences (Corker & Shakespeare, 2002). Notwithstanding, a disabled identity does include some biological stamps, embodied in the impairment effects (Thomas, 1999). This led me to rethink Davis’s question and to rephrase it: identities are not only socially constructed, but also constructed by the bodily experience of the subject. Consequently, my question was: is there a core identity that combine these two experiences: disability as socially produced and impairment as experienced by the body? During their academic journey, students had to manage not only disability, as socially produced, but also to overcome difficulties and barriers that are related to the restrictions of activities stemming from their impairment. However, difficulties stemming from the impairment effects, such as lengthening of the time dedicated to learning, forced intimacy, participation in class discussions and choosing practical work, were found to interact with the way disability is socially produced, especially in the context of university as a disabling environment, as shown in the fourth theme. While analyzing the process of integrating an identity which combines both disability and impairment effects it was found that the bulk of Section 7 Page 151
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this identity had to do with the social political dimensions of disability and only a fraction of it had to do with the impairment and the bodily aspects of it. Shakespeare (1996) claims that “disability as a positive identity is a process. This alternative to the negative identification with impairment is provided by those who resist the negative implications of the medical model and develop a response which focuses on the exclusion and injustice which characterizes disability.” This quote might explain the fact that participants in the current study felt more comfortable identifying with the concept of disability, as interpreted by the social model, rather then with their impairment and the impairment effects that stem from it. This finding suggests that most of the difficulties students faced while attending university had to do with disability as socially produced, or with the interactions between the impairment effect and the disabling environment. 5. The Academic Journey - a Shift from the Personal to the Political, from the Medical to the Social Model Participants in the current study were self determining their identity during their academic journey both as students and persons with VI. A close look at the process which was examined in the current study can be done from different levels and perspectives: 1.
Each interview or participant as a unit of analysis
2.
The seven themes that emerged from the data
3.
The timeline analysis
4.
My own academic and personal journey
All of these four levels yielded a narrative of change. They all started with the narrative of being the other, the outsider, and trying to fit into the norm, and ended with the narrative of empowerment with the recognition of the multiple identities that are represented through the academic journey, which are positive identities that enable growth. The Darwinistic hypothesis often expressed as "ontogeny recapitulates phylogeny", or the “theory of recapitulation”, states that in developing from embryo to adult, animals go through stages resembling or representing successive stages in the evolution of their remote ancestors Section 7 Page 152
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(for example: the human baby starts with crawling on all fours, then slowly stands up, walks and finally runs - this is a replication of what happened to the human race which at first stood on all fours until man slowly rose to his feet and stood upright). The academic journey, as revealed in the current study, represents the journey that started with the disability civil rights movement at the seventies and which now takes up an increasing part of societal thinking across the western world, through the last four decades, a journey from the medical model to the social model. Table 4: The journey from the medical model to the social model as represented by the four levels of the current study Level The individual - a single interview/ participant
Starting point
Ending point
The crisis
Competence and success
The seven themes
Trying to fit - Disabling normalcy or normalizing disability
The time line analysis
Shock, loneliness, facing a big bureaucratic system
External influences and internal forces that lead to growth Discovering the strength to overcome difficulties. Freedom, autonomy and independence
My personal academic journey
My right eye is blind
Positive disabled identity
medical model
social model
(will be discussed in the epilogue)
The societal process
Shakespeare (1996: 100) states that the shift toward disability as a positive identity, often “takes the form of replacing one analytical framework (the `medical model') with another (the `social model').” The body of knowledge which led to the emergence of the social model of disability is primarily concerned with both the “political project of emancipation” and the development of an “oppositional politics of identity” (Corker & Shakespeare, 2002: 3). These two concepts were revealed in the current study, in which not only the participants but I also, were emancipated through the shift from the personal to the political, a shift from the medical model to the social model, a shift toward a positive disabled identity. Section 7 Page 153
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Davis (2006b: 231) claims that disability is a relatively new category of identity (compared to race, class, gender etc.). “The first wave of a struggle involves the establishment of the identity against the societal definitions that were formed largely by oppression”. In this phase the identity is “hypostasized and turned positive against the negative descriptions used by the oppressors”. This stage is characterized by creating the terminology of the new discourse and the “tacit approval of an agenda for the establishment of basic rights”. In the second wave, a new generation of people who have grown up with the new models (they have a firm sense of identity), “begin to redefine the struggle and the subject of study. This stage allows searching for diversity within the group and redefining the identity in more complex ways”. The Israeli case presented in the current research is the first wave of the current struggle, as Israel is just starting to understand disability as socially produced. Therefore, I am full of curiosity about replicating the same study ten years from now. Limitations Due to the nature of the current study and its small sample there is a need for replication and further research. However, the qualitative method used in the current research yielded information that provides a personal view of the academic journey as experienced by the research participants.
The following methodological aspects limit interpretations of the findings. First, I cannot rule out a selection effect. It may well be that all the students who participated in the study had managed to overcome barriers and difficulties and have enough self-confidence to struggle against the disabling environment. Second, only students with VI were interviewed in the study. Sighted students, faculty and staff perceptions and attitudes were discussed only through the eyes of the students who participated in the current study. Further research should examine these populations in order to get a clear understanding of the whole process of academic and social adjustment of university students with VI. Despite these limitations, it should be noted that this is one of the very few studies of the adjustment process of university students with VI that drew on an extended period of analysis Section 7 Page 154
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and examined students’ experiences in a holistic and contextualized way.
Research Implications This research has many practical implications. However, these implications will not be discussed here. Fortunately, I am currently involved in some governmental projects that are aimed at promoting equal rights for students with disabilities. One implication that I would like to stress, that was mentioned many times throughout the dissertation, is the need to develop an academic infrastructure/ foundation for Disability Studies in Israel. The absence of such an infrastructure might be one of the reasons that accessibility and disability issues are still under-theorized in Israel. As Titchkosky (2008:38) claims, there is an intimate relation between establishing disability studies “as a form of critical knowledge production within the university and creating accessible learning environments” where students with disabilities, but also faculty, staff and support services, can succeed.
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Epilog
Epilog - Reflections on My Own Academic Journey
___________________________________________________________________________
My own academic journey began twelve years ago when I started my B.A. Back then my disability was not an issue for discussion. “My right eye is blind” was the sentence that summarizes the issue, and I insisted on declaring this whenever something went wrong (for example when I bumped into someone accidentally) or whenever I felt that I was being observed or gazed at. I learned to recognize the wondering, sympathetic look in the eyes of the person who stood in front of me which said, “Why is that girl cross eyed?” I always felt inconvenienced by my squint, and thought that by claiming that my right eye is blind I could escape the stigma and stereotypes involved with it.
During the first two years of my studies I faced many difficulties, especially in reading the huge amounts of learning materials and during exams, but still I did not connect between my difficulties and my visual impairment. It was only after I started working as a tutor for a blind student that I recognized that I could do better. I learned about assistive technology and started using it and submitted a request for accommodations, which made my life much easier. Suddenly the world looked brighter and I fell in love with academic learning. I started my M.A. in special education while working as a coordinator for “students with special needs” at the Open University. The normalization principle was the theoretical framework of my studies and my work. This principle argues that people with disabilities are inferior members of our society, thus the educational system has to develop high quality services which will create high quality lifestyles and enable people with disabilities to mix with those who have socially valued identities (Chappel, 1997). Though the implementation of this principle promises to improve the lives of people with disabilities, I felt discomfort about it. It was only when I started my doctoral studies that I discovered the field called disability studies and learned about the social model. This revelation provided me a better understanding not only of the experiences my students went through in their lives in general and at university in particular, but also the experiences I was going through in my life. Section 9 Page 156
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Epilog
Beauchamp-Pryor (2007: xiv) claims that many disabled researchers “have discussed the impact the social model of disability has had in transforming their lives”. I, too, experienced this transformation, which changed my perspective by shifting the responsibility from the individual with the impairment to society, from inferior and deviant functioning to the barriers resulting from attitudes, stigmas and stereotypes, from impaired abilities to the design of the physical and social environment. This transformation motivated me to write this dissertation through the lens of disability studies, rather then special education. I felt reinforced to do so, as many scholars in disability studies share their own life experiences while writing, transforming from the personal to the political (for example: Davis, 1995; Pfau, 2007; Siebers, 2004; Swain & Cameron, 1999). Davis (2002) reinforces the importance of the writing of scholars in disability studies, who are reflective narrators whose disability (or lack thereof) is part of their argument. Jenks (2005) claims that her personal experiences were changing due to her research on the topic of disability, as she phrases it: “...changing the life experiences I’m researching even as I am living them. The continuous nature of studying what I am living produces ongoing change”. (p. 152). I deeply share this feeling, as the academic journey which I went through, and especially writing this dissertation, enabled me to integrate my positive disabled identity. I have changed during the past twelve years, moving from being a person with an impairment, which was a marginal fact in my life, to being a person with disability. My academic interests have also changed as today I present conference papers, teach lessons, coordinate a group of graduate students with disabilities and work on two governmental projects on the subject of higher education and disability. But everything I do today, I do with modesty and respect for the experiences of the people around me, who are the most professional experts in the field.
Corn presented her visual functioning model in Tel Aviv 28 years ago, and summarized her article about the model by writing that “…The strengths and weaknesses of the model will be determined when professionals and individuals with low vision seek new ways to understand visual functioning” (1983, p. 375). I hope that this dissertation, which was written in Israel, Section 9 Page 157
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Epilog
inspired by Corn’s model, has not only suggested new ways of understanding visual functioning, but has also provided deeper insight into each of Corn’s model dimensions: the impairment, the person and the environment.
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Appendices Appendix I - Call for Participants (via email)
___________________________________________________________________________
Dear Student, My name is Nitsan Almog and I am a doctoral student at Bar-Ilan University. I would like to ask you to participate in a research study about university students with visual impairments.
Participation in the research will include four meetings during the next two years in which personal interviews will be conducted (with me). At the interviews you will be asked about your personal experiences as a university student with visual impairment - both social and academic.
My research purpose is to examine the characteristics of academic and social adjustment of students like you.
The importance of the current study is in focusing the attention of the academic system on the needs of students with visual impairments, and the use which can be made of this information in order to help students like you in their academic journey.
If you are interested in participating in the study please contact me via (email address). You can also call me in order to receive more details (cell phone number).
Sincerely, Nitsan
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Appendix II - Personal Details Questionnaire ___________________________________________________________________________
Name: ____________________________ Telephone number: __________________ Birth date: _________________________ Year of Immigration:_________________ Type of visual impairment:____________ __________________________________
Family name: ______________________ Address: __________________________ Country of birth:____________________ University: _________________________ Age of onset: _______________________
Eligible for blind certificate: yes / no Since: ____________________________
Other impairments : __________________
Year of studying :____________________
Departments :_______________________
High school:________________________ High schools majors:_________________ Other former education :______________
Military Service : yes / no
__________________________________
If yes when and in what position? __________________________________
Parents’ place of birth :________________ __________________________________
Parental education:___________________ __________________________________
Parental employment:________________
Siblings : __________________________
_____________________________
__________________________________
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Appendix III - Interview Guide (first interview) ___________________________________________________________________________
Please tell me your story from the perspective of being a university student with VI.
If the following topics were not mentioned during the interview the participant will be asked about them:
High School •
Do you think that high school affected your desire to be a university student?
•
What characterized you in that time?
•
How did you deal with high school? Which accommodations did you receive?
•
How did you imagine the continuation of life at the same time? Or - What did you think you'd be "when you grow up”?
•
Did you have other occupations / hobbies after school hours?
•
Did you take the psychometric exam ? If so, when? How was that experience for you?
Military Service / National Service / Volunteering - If there was •
Did you volunteer in the IDF/ other national service ? Yes / No - why?
•
Do you think this has contributed to the fact that you are a student today?
•
Did it help you develop your independence? Your self-confidence? In what ways?
University •
Why did you decide to go to university?
•
How did you choose your field of study?
•
Learning difficulties you encountered resulting from your visual impairment
•
Factors which supported your studies at university
•
Do the thoughts you had before university match what you found out in practice?
•
Did you have any issues with university bureaucracy? How were these resolved ?
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Orientation, Accommodations and AT •
Campus physical orientation - how do you orient (cane / dog) and why? What does this mean for you?
•
How do you read learning material? Search the library for materials? Summarize articles ?
•
Technical aids and AT - which aids do you use (Braille machine, tape recorder, CCTV, computer with Braille monitor, text to voice software and more)
•
Are there any AT devices that might help you, and can you get them?
Interactions with lecturers •
Are the lecturers aware of the fact that you are visually impaired ?
•
Do some lecturers offer some kind of assistance ? If so what kind?
•
What kind of feelings do you get from lecturers ?
•
Is there a particular lecturer who you turned to and refused to help you? Why ?
Social interactions and friendship •
have you acquired friends at university? If so, describe how it happened ? Who turned to whom?
•
Did you know some students before you entered university?
•
How often do you meet with friends?
•
Are there friendships that help you in university?
•
Are university friendships different from other friendships which you have had during your life? If yes - how?
•
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•
Do you have leisure time activities after your learning hours?
•
Do you have hobbies (sports / singing etc.)?
•
How do you spend leisure time? With whom?
Summary •
Please answer the following questions:
•
Do you think you are a successful student?
•
What (in your opinion) is success in university?
•
What (in your opinion) is failure in university?
•
Describe yourself briefly (in a few sentences) as you see yourself today at this point in your life.
Final question: Do you think there are any issues that I did not mention that you would like to talk about?
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Appendix IV - Interview Guide (fourth interview) ___________________________________________________________________________
The interview today will be different. I'm less interested in the story of what happened in the last semester (update on what happened since we met) and I will ask focused questions intended to sum up your experience in university, what you learned during this process. •
Give a title or to create a “visiting card” for each year in university
•
What is the most significant thing you learned about yourself during this period?
•
What did you discover about yourself?
•
Did you learn something new about yourself as a blind / visually impaired person?
•
If you had to sort out the types of assistance you needed, how would you do it?
•
What kind of assistance feels more comfortable / less difficult to ask for?
•
If you now attended a job interview and were asked: what are your strengths? What would you answer?
•
What are the most significant skills you have acquired during your studies so far?
•
Who are the people whose support was most significant for you? What kind of support was it?
•
If you could see yourself as you are today, with all the knowledge and experience, the day before you started your first year at university, what would you say to yourself?
•
Was there something in university that really disappointed you? Or that you thought would be a certain way and it turned out to be different?
I would like to ask you the same final questions as in out former interviews: •
Do you think you are a successful student?
•
What (in your opinion) is success in university?
•
What (in your opinion) is failure in university?
•
Describe yourself briefly (in a few sentences) as you see yourself today at this point in your life.
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