THE WINSTON CHURCHILL MEMORIAL TRUST OF AUSTRALIA. Report by Sarah Barton Churchill Fellow

THE WINSTON CHURCHILL MEMORIAL TRUST OF AUSTRALIA Report by Sarah Barton 2010 Churchill Fellow To research in the UK & the USA for a landmark docume...
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THE WINSTON CHURCHILL MEMORIAL TRUST OF AUSTRALIA

Report by Sarah Barton 2010 Churchill Fellow

To research in the UK & the USA for a landmark documentary about the history of the disability rights movement.

I understand that the Churchill Trust may publish this Report, either in hard copy or on the internet or both, and consent to such publication. I indemnify the Churchill Trust against any loss, costs or damages it may suffer arising out of any claim or proceedings made against the Trust in respect of or arising out of the publication of any report submitted to the Trust and which the Trust places on a website for access over the internet. I also warrant that my Final Report is original, does not infringe the copyright of any person, or contain anything which is, or the incorporation of which into the Final Report is, actionable for defamation, a breach of any privacy law or obligation, breach of confidence, contempt of court, passing-off or contravention of any other private right or of any law.

Signed:……………………………………..

Dated: ………………………….

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Index

Introduction……………………………………………………………………Page 3 Executive Summary………………………………………………………….Page 4 Programme……………………………………………………………………Page 5 Main Body……………………………………………………………….…….Page 7 Conclusions……………………………………………………………..…..Page 24 Recommendations…………………………………...……………………..Page 25

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INTRODUCTION Between 2003 and 2005 I developed and produced a community television series about disability issues called No Limits. After acting as Series Producer on the first seventy half hour episodes I passed the programme on to others in the disability community and went to work on another unrelated project. I soon found myself wanting to revisit the subject of disability with a particular interest in disability rights and the history of how disabled people have been treated over time. With a small development loan from Film Victoria I embarked on a research project to create a three part series about the history of disability. Over two years I did a great deal of research on the subject and developed a three part documentary script but was ultimately unable to interest an Australian broadcaster in the subject. I put it aside for several months until friends and colleagues encouraged me to pursue it further. I decided to scale down the project and focus on the modern era of the disability rights movement with the aim of condensing the film into a single hour. Rather than spending another year at my desk writing I decided to look at alternative sources of funding to get started on the film and bypass the lottery of the broadcast system for the time being. With this in mind I applied for a Churchill Fellowship to travel internationally and interview some of the key surviving figures in the disability rights movement. My focus was to be the United Kingdom and the United States of America. Following the success of my Churchill Fellowship submission I have also secured a further loan from Film Victoria to develop cross platform elements for the project, and the City of Melbourne have also approved a grant so I can record interviews with key figures from the Melbourne Disability Rights scene in 2011. I am still seeking additional funds to complete the film and also talking to broadcasters who may be interested. This story could equally span three episodes of television so my challenge now is to structure the documentary in line with the resources and funds available.

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EXECUTIVE SUMMARY Sarah Barton, Independent Filmmaker, Fertile Films Pty Ltd 30 Duke Street Windsor VICTORIA 3181 PH: 0419 584898 A Winston Churchill Fellowship to research in the UK & the USA for a landmark documentary about the history of the disability rights movement. Highlights:  Three days at the Lancaster Disability Studies Conference in the UK  Meeting and interviewing activist Jonny Crescendo in Philadelphia  Interviewing Ed Roberts’ ninety-year-old mother Zona Roberts.  Meeting and interviewing 25 disability rights activists across the UK and the USA. Recommendations:  Activists in the UK and US generally agreed that when government disability supports are assessed on the assumption of an inability to work, they trap disabled people in poverty and limit their ability to contribute and be involved in society through (often part time) paid employment.  The social model of disability is a useful tool in the development of disability rights and is widely understood in the disability community. Communicating the social model theory of disability more broadly in an accessible way should lead to more progressing thinking around disability and disability rights in the general community.  Within a social model framework, there should be room for consideration of the individual’s impairment experiences.  Some activists believe that the Social Model is less meaningful for people whose disability is less visible physically, and for those with a severe intellectual disability.  It is important to foster an understanding of the history of the disability rights movement in the UK and the US, particularly as Australians consider the merits and viability of a no fault National Disability Insurance Scheme. Implementation and dissemination: The interviews recorded as part of my Churchill Fellowship will be edited and used in two ways:  Interviews and archival material will be included in a documentary for broadcast and for use as an educational resource both in secondary schools and Universities.  Additional interviews and archival material will be edited and made available on a website where students and other interested parties can visit and comment on the material.  An online community will be developed around the online material, which will be released in stages (possibly monthly over 12 months). This strategy will encourage discussion and debate over the material and lead to an ongoing dialogue about the issues covered.  Media outlets will be encouraged to access the materials and develop discussions around the issues raised.

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PROGRAMME 7th – 9th September 2010 Lancaster, England        

Attended Disability Studies Conference Recorded interviews with: Professor Len Barton Allan Sutherland (activist) Professor Carol Thomas Peter Beresford (activist) Adolf Ratska (Swedish based activist) Pam Thomas (activist)

10th September 2010 Leeds, England   

Visited the Faculty of Education at Leeds University Recorded an interview with Professor Colin Barnes Collected copies of archival material from the Leeds University Disability department.

14th – 24th September 2010 London, England  Recorded interviews with:  Judy Hunt (widow of activist Paul Hunt)  Sian Vasey (activist)  Met with Distributor Tim Sparke from Mercury Media  Met with Allison Walsh, disability advisor from Channel 4  Contacted potential production companies to co-partner with.  Met with artist Furrah Syed 4th October 2010 Geneva – Switzerland 

Recorded interview with Tom Shakespeare while on holiday nearby in France with family.

11th – 14th October 2010 New York – United States    

Visited the American Foundation for the Blind archives Met with Distributor Anthony Sweeny from Icarus Films Recorded interviews with: Warren Shaw (historian)

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Nadina Laspina (activist)

15th October 2010 Philadelphia – United States      

Visited Liberty Resources and ADAPT Recorded interviews with activists Nancy Solandra Jonny Crescendo Cassie James Collected archival materials from the collection of Jonny Crescendo

17th – 21st October 2010 Washington DC – United States      

Met with Curtis Richards from the Institute for Educational Leadership Visited disability historian Katherine Ott at the Smithsonian Institute Recorded interviews with: Richard Dyvelder (Senior Advisor -Department of Transportation) Kathleen Martinez (Assistant Secretary, Office of Disability Employment Policy) spoke with Yoshiko Dart (widow of activist Justin Dart)

22nd October 2010 Austin, Texas – United States    

Visited ADAPT headquarters in Austin, Texas Recorded interviews with: Bob Kafka (ADAPT activist) Stephanie Thomas (ADAPT activist)

25th – 29th October 2010 San Francisco & Berkeley, California – United States           

Visited the archives at the Bancroft Library, University of California, Berkeley Campus Visited the soon to be opened Ed Roberts Campus Visited the Berkeley Independent Living Centre Recorded interviews with: Mary Lou Breslin (Disability Rights Education Defence Fund) Curtis (Kitty) Cone – disability activist Joan Leon – co- founder of the World Institute on Disability Zona Roberts – activist & mother of Ed Roberts Susan O’Hara – disability academic & activist Hale Zukas – co-founder of the first Independent Living Centre in Berkeley. Peter Mendoza – Berkeley Centre for Independent Living

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MAIN BODY The aim of my Churchill Fellowship was to research the history of the disability rights movement in the United Kingdom and the United States and record video interviews with key surviving figures in the disability rights movement for inclusion in a documentary about the history of disability rights that will also include the Australian perspective.

Technical Background A documentary crew usually consists of a director, cinematographer and sound recordist although it is not uncommon these days for the director to assist with sound as part of a crew of 2. Undertaking all 3 roles working solo takes this to another level but is something I have managed numerous times on low budget productions. As a filmmaker I wanted to come home with some tangible record of my work that could be used in the finished film and so I took my production kit and recorded the best quality high definition video I could with the available resources. I travelled with a Sony Z1 HD Camera, Miller tripod, a radio microphone and a small Lowell lighting kit that began with 2 lights and was enhanced by some accessories and another light purchased in New York. I also took 25 hours of tape with me and purchased another 3 tapes in San Francisco but used only 1 of those. Everyone I interviewed signed a video release form, which means I can include their interview in the finished film and any online versions. Technically there were occasions when the picture or sound quality was not as I would have liked however I believe that all of the interviews I recorded would be “usable” if needed. It is highly likely that many of the interviewees will not be included in the film however I also plan to develop an online resource that would make the other interviews available for viewing for interested parties. I would also like to add at this point that traveling with the above kit meant that I always exceeded the luggage allowance – especially in America. For anyone else considering a similar undertaking they should think carefully about their mobility with so much baggage, especially for airport transfers where a suitcase is additional to any equipment. I travelled to a lot to filming locations by public transport and in London especially most of this involved stairs so wheeled luggage must be carried up and down stairs. This was also the case in New York on the subway. In Washington DC, Philadelphia and San Francisco rail transport is more physically accessible however the actual stations are often much further away from the hotel or destination and a taxi may be necessary.

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For any other film makers considering a similar exercise, my recommendation is that yes it’s do-able but it can be physically demanding depending on the amount of gear being transported, and the technical skills of the individual filmmaker with sound and picture. The nature of my research meant that my visits to interviewees were only for a few hours. During my 6 week fellowship I met with 26 individuals and also visited 4 institutions for the purpose of researching archival material for inclusion in the film.

A Note About Language At this stage I would like to point out that nearly all of the interviewees I spoke to in the UK use the term “disabled people” while the term “people with disabilities” is the preferred term in the USA. In Australia both are used with “people with disabilities” being the most common phrase. “Disabled people” is sometimes used in Australia as a conscious nod to the ideas of the UK disability rights movement and other times used unconsciously for expediency. The thinking behind both terms is explained by the relevant interviewees in my recordings. Broadly in the UK a decision was made to emphasise that people are disabled by their environment and as such it was desirable that the disability is externalised rather than internalised. The observation is also made that other comparable minorities are known commonly as “gay people” or “black people”, and so “disabled people” came to be preferred. In the USA on the other hand there was a desire to emphasise that this minority group were people first and that the disability was secondary to their shared humanity and so the term “people with disabilities” was rationalised as preferable.

Disabilities Studies Conference – Lancaster, England Week one was spent at the Disability Studies Conference hosted by the Centre for Disability Research at Lancaster University in the north of England. The conference organizers arranged for me to be based in a tutorial room where I could conduct my interviews with few interruptions. Many of the key people I wanted to meet in England were attending the conference and so I was able to record several interviews with relative ease. My first interview was with retired Professor Len Barton. Len wore a hat, which partially made up for the lack of visual interest in the background but also made him tricky to light. We had a great conversation that included a story about his personal transformation from working in special schools to being a committed critic of special education. I asked him why he thought that social science had taken so long to engage with disability as a signifier of disadvantage compared with other social disadvantages. He speculated that

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this was because of the medicalization of disability and he told how he himself had undergone a complete change in the way he viewed disabled people from having a very sentimental view of them, to understanding the social model of disability through the voices of disabled people themselves and through disability arts. Professor Barton is a strong advocate against segregated education for disabled children including those with learning disabilities. That afternoon I seized the opportunity to interview Allan Sutherland the founder of The Liberation Network and a great exponent of disability arts. Along with UPIAS (the Union of Physically Impaired Against Segregation), the Liberation Network was one of the early disability rights groups in the UK. Allan explained how unlike UPIAS, which was a Leninist group that wanted to change society, The Liberation Network was much more about personal politics and took their inspiration from the women’s movement and the gay rights movement. Allan’s views are somewhat radical in the UK context and he claims that the social model, which is the dominant theory in the UK disability rights scene, works much better for wheelchair users than it does for those whose disability is less visible. Between interviews on day one, I managed to attend one conference session – on death and dying. A woman from Israel was attending and she and I were shocked to learn that disabled people in the UK can find themselves with DNR’s (Do Not Resuscitate) attached to them against their will when they are hospitalised. They live in fear that if they find themselves critically ill in hospital the doctors will NOT do everything they can to save them despite their own desire to be resuscitated and to continue with their lives. They must depend on loved ones to lobby for their lives to be saved. This wasn’t something I’d thought about before. Wondered if this happened in Australia and feedback from one correspondent back home said that yes they too had sensed that they had to work harder to get good medical attention for their disabled relative and stay vigilant that doctors don’t make assumptions about quality of life. I decided this was an important theme to follow through in my research. The discussion revealed that many disabled people feel threatened by current euthanasia discussions and feel they are being persuaded that they shouldn’t be a burden to others and so are opting for an early exit rather than pursuing the right to live with a disability and receive medical attention.

My next interview was with Professor Carol Thomas who is a director of the Centre for Disability Research (CeDA) the organisation that hosted the disability studies conference at Lancaster University. As a professor of medical sociology, Carol has an interest in making the National Health System less disablist in its delivery of services. She maintains that disabled people know that doctors will make decisions about the quality of their life –

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subjective judgments from the viewpoint of someone who is not disabled. It’s often true to say that they will put a “do not resuscitate” order on the person’s medical record indicating that in their view they are not worth resuscitating. Carol also reflected on the experiences of disabled women and how they differed from men. While she felt her own experiences were not out of the ordinary she did recount the story of a disabled woman who decided to have a child. The woman felt the social services that were supposed to help her had judged that because of her disability she could be an unfit mother. She therefore went to extreme efforts to make sure that every time someone from social services was coming to her home, everything looked immaculately clean and tidy so they would have no reason to suspect her of incompetence. This woman was exhausting herself with unnecessary housework just to avoid the possibility of having her child taken away from her by the very people who were supposed to be helping her. Carol talked about her interest in impairment effects as well as disablism drawing the contrast between herself and Colin Barnes who she says is only interested in disablism – that is the social barriers that disabled people experience rather than looking at their own personal experience of impairment as well. My next interviewee Peter Beresford, is a survivor of the mental health system. He talked about the survivor movement as well as the disability rights movement and drew distinctions as well as parallels between these two experiences of disability. He pointed out that many mental health service users are wary about identifying with disability while many disabled people are also keen to distance themselves from mental health issues. Despite this over the past 14 years Peter has been involved with the organization “Shaping our Lives”, which seeks to be very inclusive about diversity and disability. The group uses very broadly defined parameters for disability including learning disabilities, lifelong illness, mental health service users, and people who don’t fit the neat administrative categories. More recently they have included people with alcohol problems. They also seek to involve people who are homeless, in the criminal justice system and asylum seekers. He pointed out too that people who live in country areas have real difficulty maintaining privacy especially when accessing mental health services. I think this point is pertinent to Australia too where maintaining privacy in a small community can be difficult. Peter talked about the importance of viewing employment as a right rather than an unpleasant obligation especially in order to refute increasingly populist arguments that people living on benefits are less worthy people. He observed that social division is being engineered by such arguments when in reality disabled people want the opportunity to work and make a contribution to society. Adolf Ratska was a keynote speaker at the conference visiting from Sweden where he is a leader in the Independent Living Movement. Ratska was a

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student in California at the time when the Independent Living Movement was getting started in America. Ratska tells his personal story of life after contracting polio at 17 – a story not unlike that of Ed Roberts and many other polio survivors who were the backbone of the disability rights and independent living movements. Ratska says “I was born in Czechoslovakia. In Germany I contracted polio at the age of 17 in 1961. After that I lived in a hospital ward because there was no alternative – no assistance, my mother was too old. After five years in hospital I finished school. I got a scholarship from the German state that catapulted me to the hot bed of flower power in the 60’s in California, studying and having a good time. Within a couple of weeks I turned from a patient in a hospital to a student. I had money that also paid for assistance.” He talks about how his assistants were unreliable and he was too dependent on too few attendants – the first guy tried to blackmail him and another tried to strangle him. At times his life was in danger from unreliable attendants but it was a better life than the one he had in hospital. There were girlfriends too and eventually a wife. He talks about how he moved to Sweden and took with him the principles of the independent living movement and how these days there are more than 500 private companies in Sweden competing for the opportunity to provide services for people with disabilities. During questions and answers following Ratska’s keynote address at the conference there was friendly disagreement between Colin Barnes and Ratska about the merits of this system of private companies competing to provide social services. I sensed that the system was ideologically unpalatable for Barnes however Ratska insisted that the system worked well. After this I interviewed Pam Thomas an activist who came a little later to the movement but was involved with grass roots actions for accessible transport as well as the abolition of the televised charity telethon. She told the story of a prominent television personality who had an idea to plant a rose garden outside the Leeds railway station. His thinking was that disabled people could enjoy the roses but the idea had come about entirely without consultation with disabled people themselves and what they really wanted was accessible trains that they could travel on, not a rose garden they could dwell upon. This lead to a protest where a group of disabled activists blockaded the trains, preventing them from leaving Leeds station and drawing attention to their access needs. Their chant on that day was “rights not roses”. On reflection Pam felt that the public were generally quite sympathetic to their protest. Pam recalled being one of the protesters who rallied against Telethon a disabled charity fundraiser that used patronizing images of disabled children to raise money. These protests were very successful. After the first year of

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protest the funds raised by Telethon were greatly reduced and after the second year of protesting the Telethon was abandoned. Pam was my final interview at the Disability Studies Conference and after that I travelled to Leeds to interview Colin Barnes. I had met Colin at the Conference but he suggested that conducting the interview at his faculty would be more convenient and also would allow me to study some of his archival materials.

Leeds University During my visit to Leeds University I managed to make DVD copies of several short films and snippets of archival material. These copies are a valuable reference but will ultimately need copyright clearance if they are to be included in the film. Fortunately I was carrying software on my laptop that allows me to make copies of DVD’s relatively easily. I also took a pile of blank DVDs with me for this purpose. I filmed a long and engaging interview with Colin Barnes who is Professor of Disability Studies at Leeds University. Colin is an articulate and engaging interviewee who gave me a concise definition of the “Social Model” of disability, which he describes as a tool with which to identify socio-political barriers and not a rejection of appropriate medical intervention. Colin explains: “No body denies the importance of medicine, but the issues are mostly social. The obvious example is employment. Unemployment is explained with reference to impairment, but when you look at why disabled people are unemployed you see they don’t have skills because education is not supportive. They attend special schools and learn knitting and basket weaving. If you want to find a job you need accessible transport, you need accessible housing – most people have to move to get to a job. On top of that you have a work system geared to maximize profit, working fast and disabled people can’t work as fast, they need personal assistants and additional space, funding etc. On top of that in welfare states like in the UK disabled people get benefits – if you are in receipt of a disabled living allowance you place this at risk if you undertake employment, so there is little incentive to work.” Colin provided an historical context for the work of Vic Finklestein and Paul Hunt (whose widow I also interviewed at length in London). He also talked in detail about his own personal journey being blind and the limitations on his education and how he came to be Professor of Disability Studies. I told Colin about how Australia is currently considering a National Disability Insurance Scheme and asked for his thoughts on such a scheme. He hadn’t heard about it at all but was initially wary about viewing benefits as the answer to all the problems of disability rights. His point was that any such scheme should not be associated with one’s ability to earn an income. Both Colin and many activists in America felt that disability support benefits that were devised to compensate for an inability to work somehow miss the point of disability

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needs and also lock disabled people into poverty traps where they fear taking on employment in case they risk their benefits. Colin did say however that we need to address disability poverty and certainly agreed that more support was needed. He pointed out that disabled people themselves should be the ones to make assessments for the scheme as the assessment process was where rorts could occur and peer assessment seemed like the most informed way to ensure that people received according to their needs.

London My interview with Colin Barnes was the last in the north of England and after that I made my way to London. As well as conducting more research and a couple more interviews I also used this time to begin logging my tapes which was important so I could assess the material I was getting both in terms of content as well as technically. I needed to gain an overview of what was being said and watching the footage and taking detailed notes is an important part of this process. My research lead me to an interesting blog called “Care Factor” run by an young Australian woman who was working in England as a personal assistant for disabled people in their homes. Her work was often intense and as a creative outlet she started collecting unusual images of disability and posting them on her blog. She was surprised to find that the name of the blog “Care Factor” didn’t really translate well in England – while I think Australians would see it as an inoffensive play on words. Her collection of images is sometimes absurd and confronting, other times banal yet interesting. I found the collection inspired ideas about how to visually bring my documentary to life and enhance the oral stories and archival material. My first London interview was with Judy Hunt the widow of Paul Hunt who together with Vic Finklestein started UPIAS (Union of Physically Impaired Against Segregation). Paul had grown up in an institution and while still living there he had been part of a group who increasingly took control of their own lives. The residents of Le Court were mostly physically impaired and as such would never find themselves living in such a place today. Judy later sent me copies of some films that were made by the residents at Le Court in the 1960’s. Much of the footage is of good quality black and white and sections of it should work well in the documentary. Judy talked about the intellectual connection that existed between Vic Finklestein and Paul Hunt and how together they developed their campaign against the segregation of disabled people in institutions. Judy acknowledged that as an organization UPIAS was uncompromising and that many people had problems with that but Paul and Vic felt that they needed to stick to their principles to achieve their objectives. Judy’s recollections of that time are interesting too because she points out that many members of UPIAS and other organizations did not have their own telephone and many did not have cars. There were also no computers for creating newsletters which were typed, roneoed and posted. She paints a vivid picture of a time well before

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the conveniences of Facebook where political activism really did demand a huge commitment of time and resources. Judy also provides some background to the International Year of Disabled People and tells of some of the planning in the lead up to the year, which was 1981. While I was in London I took the opportunity to catch up with Tim Sparke from Mercury Media. After meeting Tim a couple of years ago at the Documentary Conference in Fremantle he had shown interest in my original history of disability documentary idea. He also distributes my earlier film Untold Desires in the UK although his cutting edge online distribution site is still being finessed. Tim was interested in the film I was there to make and helped me set up a meeting with Alison Walsh at channel 4. Alison is not a commissioner but advises on disability matters and I’m told that when she likes a project she can be very influential in the success of a commission. Alison had seen and loved Untold Desires and so was very happy to meet Tim and I for lunch the following week. Channel 4 has the broadcast rights for the Paralympics in London in 2012 and so the idea of some programming that might work in the lead up to that event was of interest. Over lunch I got the impression that if my film were to contain some content relevant to the Paralympics then the chances of a commission would be much stronger. The problem is that I’m not sure that I can actually do that without compromising the film too much. What I’ve found is that there’s a certain amount of conflict between the high visibility of not very typical elite athletes with a disability and the aims and objectives of the disability rights movement. The Paralympics are okay for what they are but the disability rights movement and the interest of my film is about the struggles and aspirations of ordinary people with a disability who are neither inspirational heroes nor tragic victims. I will certainly follow up with Alison and Channel 4 in the hope that this promising introduction might lead to a commission for the film. Sian Vasey was my next interviewee. This interview was somewhat shorter than earlier interviews and she apologized that she felt she was not a good interviewee. I asked her about the disability arts scene, which she was a part of and she talked about how disability arts are closely linked to the social model of disability in that they are an artistic endeavor that makes direct comment about the experience of living with a disability. Disability arts is a form of activism and awareness raising unlike say mouth and foot painters whose art is not generally making an explicit point about the experience of disability. There was one more interview I had hoped for in England with Tom Shakespeare. Tom has in the past been an outspoken critic of the social model of disability particularly in his book “Disability Rights and Wrongs”. Since I had begun my research Tom had relocated from Newcastle to Geneva

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and begun working for the World Health Organization. Fortunately I had planned a short holiday in France quite close to Geneva before continuing my fellowship in America, and so I was able to conduct the interview there. Tom is an experienced and eloquent interviewee. I first asked him about the work he was doing at the World Health Organisation and he explained that he is helping to write their statement on disability and also working on mainstreaming disability into all aspects of WHO – such as disaster response, so that when WHO goes in to a disaster scene for example, they consider the particular needs of disabled people in the context of how they support people in general. It sounded like a really interesting if somewhat daunting job. I talked to Tom about his views around the social model of disability and at first I felt that he had somewhat moderated his position. He did say however that he felt the absence of consideration of the individual’s experience of impairment was problematic for the social model and he outlined the different ways in which people come to disability and how that affects their view and experiences. He articulated the different experiences of someone born with an inherited disability from someone who becomes a paraplegic in their twenties for example and also for people whose disability is degenerative. America - background After a short holiday in France to clear my mind (and expand my waistline) I moved on to America, which has a different approach to supporting people with disabilities and a different legislative framework within which the disability rights movement operates. I quite quickly became aware of a different tone in the interviews, which I believe was culturally and politically based. While we all speak the same language, I found these different responses to disability rights fascinating. By way of background information I learned that America has a system in place to support people with disabilities (the term favoured here rather than “disabled people” which is used in the UK) called Medicaid. Medicaid is a state based program and because of this there are vast differences in the way the program is administered from state to state. Some states such as New York and California provide more generous Medicaid support than other poorer states. The saying among activists is “if you’ve seen one Medicaid scheme you’ve see one Medicaid scheme,” which alludes to the fact that there’s a bewildering diversity in the way they are administered. Having said this, generally Medicaid is a scheme that is linked to a person’s ability to work and earn an income. I was told by one interviewee that anyone who has assets of more than $2000 is ineligible for Medicaid support. While this figure may vary slightly from state to state the principle remains that this is a support scheme for those who are very poor and have no hope of working.

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As medical expenses in America are notoriously expensive and people with disabilities often have considerable medical needs, many people are frightened of taking the risk of losing their Medicaid. The gap between the relative security of Medicaid and the uncertainty of paid employment traps many people with disabilities in America in poverty. Many of my interviewees said that what was needed was a scheme that was not based on the assumption that people with disabilities could not work. A scheme that provided support while encouraging people to seek paid employment would lead to better lives for disabled people. I saw parallels between this poverty trap and that which exists with our Disability Support Pension, however I believe that it is the medical component of the American scheme that makes the poverty trap much greater. In Australia while pensioners do enjoy reduced medical expenses, the imperative to have private health cover is less in Australia and so accepting an offer of paid work might involve less risk. I had found it quite difficult to firm up interviews for the American leg of my journey before I left Australia. As my arrival was about 6 weeks away nobody seemed to see any urgency in getting back to me. My problem was that I wanted everything locked in before I left but the reality was that America was looking less organised than I had hoped. A lack of email access while I was in France compounded things and it was all somewhat harder than I had anticipated. My biggest disappointment was finally getting in touch with Judy Heumann who is a key figure in the disability rights movement. Earlier in the year she had responded happily and agreed in principle to an interview but a date was unconfirmed. When I finally made phone contact with her in New York (after weeks of calling and bounced back emails) I was very disappointed to find that she was about to fly to Africa for 2 weeks and would be unavailable during my stay. This was a major disappointment but fortunately the rest of my plans worked out well and I was able to meet and interview all of the others on my list – and more.

New York My first stop in New York was the American Foundation for the Blind. I had arranged this visit from Melbourne and the archivist Helen Selsdon was extremely helpful. I spent a day there leafing through boxes of images. I was able to make rough copies and notes about the images so I can return with detailed requests to use the material at a later date. The AFB has the biggest collection of archives relating to Helen Keller but while Keller is an important figure, her life and work is a little before the period I am interested in documenting. The sheer volume of Helen Keller material was rather daunting too, so I decided to leave it to others more focused on her story and instead took a more eclectic approach, looking for interesting images that might speak about disability and provoke audiences to think

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differently. There were lots of black and white images of early contraptions that had a certain retro appeal for their sheer quirkiness in this ipad era. While I was in New York I also took the opportunity to top up my lighting kit at one of the city’s vast camera stores. I needed to purchase a set of light bulbs that work with 120 volt power for filming in the US so I took the opportunity to buy a few accessories and get advice from the expert sales person. I also met up with my American distributor who of course is very interested in distributing the finished film when it’s available. He gave me a copy of another film about disability rights that they also distribute – apparently one of their biggest selling titles, the 1994 film “When Billy Broke His Head and Other Tales of Wonder”. It’s a wonderful film and takes a very personal approach to exploring disability rights. I’m not sure I can do better than this film but my approach is different and my areas of interest are broader and so I know my film will take its own place alongside this one. Filmmaker Billy Golfus had 16 years on me and so several key figures were alive and included in his film, who are sadly no longer with us. His film includes interviews with Ed Roberts, Paul Longmore and Wade Blank all of whom were key figures in the history of the movement but have since died. My first American interview was with Warren Shaw, a New York historian whose parents were both disabled activists in the 1960’s and 70’s. Warren told stories of attending a demonstration for disabled parking spaces with his parents when he was a child. His father in particular was a colourful character who lobbied hard for better access to the built environment in New York City. Warren also shared the perspective of being a child of disabled parents which I think will be of interest. He talked about how there was quite a bit of opposition from his parents’ families when they wanted to marry – his father was a polio survivor and his mother had epilepsy. I felt that this New York story was one that had been somewhat overlooked in the history of disability rights in favour of the more frequently documented California story. Also in New York I interviewed Nadina Laspina. Nadina has been an ADAPT member for several decades and has been arrested more than a hundred times during ADAPT direct actions. She told me that currently she was barred from visiting Washington DC because of a restraining order that had been placed against her. She has worked as an academic for many years and talked about how her work had given her the freedom to participate in ADAPT without losing her job or her income. She also told how she had been unable to marry her long term partner because he too has a disability and if they were married his high medical needs would quickly plunge them both into poverty. They need to keep their assets separate so he can continue to receive the Medicaid support that pays for his medical expenses.

Philadelphia From New York I travelled by train to Philadelphia. There I visited Liberty Resources – the local hub for disability activism and services. It seemed to

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be a rather well resourced and well run centre that houses the local Center for Independent Living, Disabled In Action, and ADAPT branch. Billy Golfus describes ADAPT as the radical arm of the disability rights movement. They have chapters in 30 states and they protest and lobby for disability rights by taking to the streets, chaining themselves to things and generally attracting attention from the media and the police in the interests of change and a better deal for people with disabilities. The original objective of ADAPT was access to public transport. Originally, the name was an acronym for Americans Disabled for Accessible Public Transit. The group wanted to get wheelchair accessible lifts on buses. The Americans with Disabilities Act (ADA) of 1990 made wheelchair lifts on buses mandatory and after that win ADAPT refocused their efforts on getting disabled people out of nursing homes and giving them the choice of living in the community with support. At Liberty Resources I conducted an interview with Nancy Solandra a long time ADAPT supporter. She gave me an overview of the work of Liberty Resources and also some background about the local ADAPT chapter. In particular she told me about the long march that saw ADAPT members walk from Philadelphia to Washington in 14 days as an act of protest several years ago. I later spoke to several ADAPT members who took part in the march which could edit together into an interesting story in the documentary. After my visit to Liberty Resources I travelled to the home of musician and ADAPT stalwart Jonny Crescendo. Jonny is an Englishman who was originally involved in the Direct Action Network (DAN) in the UK. Many of the people I interviewed in the UK remembered Jonny with affection and he provides the perfect link between the stories from the two countries. Pan Thomas in particular was a participant in the same actions and they tell their own versions of the same events. My interview with Jonny covered his involvement in disability activism over three decades and two countries. It is an extensive and detailed account and offers comparisons between the two systems of disability support. Jonny’s stories link together many of the other anecdotes told by other interviewees and he is a key figure in this story. He was extremely generous with his time and story telling. He also gave me copies of many archival snippets of footage he had collected over the years (many of them were poor technical quality but originals might be found in better condition) as well as albums of his songs, which are important anthems of the disability rights movement. Jonny’s partner is Cassie James is also an organizer with ADAPT, DRACH, Not Dead Yet, and Disabled In Action. She founded the Pennsylvania Action Coalition for Rights in Housing. Cassie herself once lived in a nursing home and now works for Liberty Resources. I interviewed Cassie about her own experience of getting out of a nursing home. The day we met she was feeling unwell and was also anxious about her daughter’s health, this made for a rather pessimistic interview where she was quite focused on the difficulties of

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needing to keep working to maintain her health insurance while expressing a desire to take some time out from her high powered job. She reflected that her situation was an example of precisely the kind of trap that Americans find themselves in – forced to remain where they are (either in employment or unemployment) solely to maintain essential health cover.

Washington DC After a productive time in Philadelphia I travelled by train to Washington DC. I had 5 days planned and this was where I had hoped to catch up with Judy Heumann. Judy had given me several contacts to follow up in her absence and some good things came together somewhat at the last minute here. On my first evening in Washington I met with Curtis Richards from the Institute for Educational Leadership. Curtis did not want to be interviewed but was generous with his ideas, time and contacts. He told me that the US department of education had recently legislated that during the month of October all high school children must learn about the history of disability and that so far no one seemed to have much in the way of resources to teach the subject. He was excited because he felt that my film could work well in this context and he wanted to help and make sure that I met up with the right people for the story. The next day I spent the morning on the phone and spoke to the charming Yoshiko Dart, Japanese widow of Justin Dart. Yoshiko sadly won’t be interviewed because she doesn’t feel confident about her English and also because she doesn’t want to harm Justin’s legacy by possibly misrepresenting his ideas. She was very interested in my film and gave me leads to several clips of Justin Dart speaking that might be useful. Justin lobbied long and hard in support of the Americans with Disabilities Act and was one of only 2 people on the podium with President George Bush when he signed the Americans with Disabilities Act in 1990. Justin had travelled to every American state in the lead up to the passing of the act gathering first hand stories of discrimination from people with disabilities. Justin was a Republican from Texas and his work was hugely important in helping members of congress to understand the need for the ADA and to get members from both sides of politics to support the bill. That afternoon following an introduction from Helen Selsdon at the American Foundation for the Blind in New York, I visited Katherine Ott, at the Smithsonian Institute. Katherine has the dream job researching and developing exhibitions about disability (always through a disability rights lens) for the Smithsonian institute and was in the early stages of preparation for an exhibition about disability rights history which should be exhibited in a year or so. Her office was crammed with toys relating to disability including a Paralympic Becky doll from the 2000 Sydney Paralympics. The next day I went to the Department of Transportation to meet with Richard Devylder who had recently taken up a position there after working in California in emergency services. Richard has no arms or legs and his work in

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California was around ensuring that emergency services take into account the needs and rights of people with disabilities during emergencies – particularly earthquakes (which are not such a problem in Australia), and wildfires (which Australia knows well). In such emergencies many people can be displaced and homeless and those with disabilities may not have access to the supports and equipment they have in their home that allow them to live independently. There was some dovetailing of Richard’s work with that of Tom Shakespeare at the World Health Organisation in Geneva although Tom’s work was more focused on emergencies in third world countries. In the afternoon I filmed an interview with Kathleen Martinez, Assistant Secretary for the Office of Disability Employment Policy in the US Department of Labour. Due to a lack of available alternative locations we filmed the interview in the departmental library. The library lent itself to a lovely lighting set up and I was rather pleased with the result until some way through the interview when it occurred to me that filming an interview with a blind woman in a library full of books was more than a little ironic. Kathleen talked about what we call poverty traps and how changes in policy can help people take that leap from welfare to employment – especially in America where health care is such a barrier and creates a frightening chasm to potentially fall into. She talked about employment for people with disabilities as a right and talked about the value of people with disabilities making a contribution to society and paying taxes rather than being trapped in poverty. I used some of my time in Washington to firm up appointments for the following week in California. People still weren’t answering my emails and so I needed to get on the phone to make things happen. This resulted in a rather large hotel phone bill.

Austin, Texas From Washington I flew to Austin in Texas to meet Bob Kafka and his wife Stephanie Thomas who have been the backbone of ADAPT in Texas for several decades. Bob is a great activist with the fervour of the 70’s still in him but really articulate and knowledgeable too. Stephanie too gave me a great interview, building on themes I explored with Bob – the history of ADAPT and Justin Dart who I mentioned earlier. Justin’s story needed to be told so it was great that Bob was able to share his personal recollections of working with Justin. Bob talked about how the ADA was only possible because both sides of politics supported it and he lamented that this would be impossible today because of the huge divide between the Republicans and the Democrats that means that they no longer together as they did in the past. Bob also talked about his involvement and interest in the Not Dead Yet movement, which I had also touched on in New York and in the UK.

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San Francisco/Berkeley After a weekend in Austin, San Francisco, or more specifically Berkeley, was my final stop for interviews. In some versions the American history of the disability rights movement starts in Berkeley with the story of Ed Roberts, and so in my travels I was working backwards. My first day in California was spent in the Bancroft Library at the Berkeley campus of the University of California. The Bancroft has a huge collection of disability rights related material and in particular a significant collection of clippings, diaries and writings relating to Ed Roberts’ professional life. There was no way I could get through more than a small amount of the items in their collection so I had requested a couple of DVD’s to look at – one was a poor quality copy of the signing of the ADA in 1990 at the White House, and the other an oral history interview with Justin Dart which might be useful down the track. The Bancroft has a massive online resource of transcripts of the many hours of oral history interviews that have been made with many figures from the disability rights movement and I used this a great deal when preparing for many of my own interviews, but it was useful to watch the Justin Dart interview and get a sense of the man I had heard so much about. The other person I felt I got to know better via the Bancroft collection was Ed Roberts. Ed is sometimes described as the godfather of the Independent Living Movement and he was by all accounts an inspiring leader but this was not something I had been able to get a handle on by reading transcripts of interviews and looking at one or two photos. By leafing somewhat aimlessly through a box of papers relating to Ed I gradually felt him come into focus for me and understood the power of his personality and sense of humour to motivate others. Ed had contracted polio at the age of fourteen and was left paralysed from the neck down. He spent much of his life living in an iron lung. After an early period of depression following his illness when he tried to starve himself to death, he pulled himself out of his depression and went on the blaze a trail through what was expected of him with humour and charisma. He died in 1997. Later in the week I met Ed’s ninety year old mother Zona. She gave me a wonderful interview that covered all of Ed’s important milestones and also a more personal slant than I had gleaned from the files at the Bancroft library. She described how she too became involved in the disability rights movement and I realised that she was an important figure in her own right. The next day Mary Lou Breslin came to my hotel for her interview, which was a great relief as I was starting to feel ill with a cold and was glad not to have to travel that day. Mary Lou’s expertise is in disability law and she gave me some wonderful material including a great description of the distinction between Human rights (the focus in the UK and Australia) and civil rights (the focus in America). She also made a really nice observation from the American point of view of the differences between the UK social model

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thinking and the American social model approach – she was articulate about how and why they are similar but different. The next day I travelled to Richmond (just outside San Francisco) to meet Kitty (Curtis) Cone. Kitty was a charming and eloquent interviewee and we talked about the 504 sit in, which was a protest in the 1970’s during which people with disabilities occupied a government building for several weeks. Kitty was one of the protesters and she described how they were treated during the sit in. She recalled that they attributed the length and success of the sit in to the fact that they were well fed during the protest by many community groups including the black panthers who brought in delicious food. Kitty also talked about the difficulty of becoming a parent as a woman with a disability, how she was sterilized without question at a very young age and how happy she was when she finally adopted her son (who is now grown up of course as Kitty is now 60). After my interview with Kitty I wanted to get a shot of the original Centre for Independent Living in Berkeley – where the Independent Living Movement all began. They are about to move out of the premises they have occupied since 1974 and into the new Ed Roberts Campus nearby. I arrived unannounced and got my shot of one of the most boring buildings imaginable (I had been warned). While I was there I did a somewhat spontaneous interview with Peter Mendoza who is a program coordinator. I was quite unwell at this stage and unfortunately the technical quality of the interview (particularly the lighting) did not do justice to Peter’s eloquence and expertise. Peter talked about how the system in California had traditionally allowed people with disabilities far greater independence because it was better funded than most but he also lamented that the current financial crisis in America was having an impact on funding levels and that people with disabilities were losing some of their personal freedom due to cutbacks in the system. On the final day of my fellowship travels I needed cold medication and taxis to get to where I needed to be. I returned to Berkeley to meet with Joan Leon who was the key fundraiser for the Independent Living Centre, then for the World Institute on Disability and then for the Ed Roberts Campus. I’m sure Joan has raised in the vicinity $100 million in her career and without her the movement could not have been as successful as it was. She was modest about her achievements but I could see that the Berkeley movement was very fortunate to have had the commitment and hard work from this lovely woman. Joan was there from the very early days and was one of the 3 founders (with Judy Heumann and Ed Roberts) of the World Institute on Disability. The mission of the World Institute on Disability (WID) is to eliminate barriers to full social integration and increase employment, economic security and health care for persons with disabilities. By chance Joan lives 2 doors away from Ed Roberts’ mother Zona who is ninety and still going strong. She was only 18 when Ed was born and so they were very close – she says they grew up together. Zona told me lots about Ed including that he smoked pot (which she didn’t always approve of but it

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was his way of relaxing and she wished it was legal). She said she worried about a man of his standing in the community getting busted for possession of marijuana as she thought it wouldn’t be a good look. I’d read that Ed was a “stoner” but I wasn’t sure anyone would say it on camera but Zona and Joan both mentioned it in the course of their interviews so I’m comfortable with that if it makes it into the film. I particularly like the vision of a guy who uses an iron lung and a respirator smoking anything, let alone smoking pot. As I was packing up the camera she said to me “I’ve had a wonderful life, I’ve been very lucky actually.” I thought to myself that this is not a woman who dwells on the negatives in life. The third interview on that last day was with Susan O’Hara – another early student at the Berkeley Campus. Joan had arranged for me to interview Susan because of her availability in the same street as herself and Zona. We both weren’t sure whether she would make a major contribution to the story but she was a warm and charming interviewee. As the conversation unfolded and she told me of her first hand experiences living in the Cowell hospital where disabled students at Berkeley lived at the time (Ed had lived there too a few years earlier). She described it as a wonderful time where she really found her identity as a disabled woman where in the past she had avoided all contact with other people with disabilities. The final interview for the day and for the fellowship was a short taxi ride away with Hale Zukas. Hale is an important figure in the movement as he was there from the beginning lobbying for curb cuts and attendant care services. He was also one of the original founders of the first Centre for Independent Living. Interviewing Hale was a difficult assignment as he has a severe speech disability and refuses to use a communication aide. He had an interpreter who sat with him and explained to me what he was saying. There were times when I thought I knew what he was saying but her translation was actually quite different. He certainly told her off if she got it wrong so I can only assume she was right most of the time but he was very hard to understand. Because of the slowness of his communication I didn’t get to cover as much ground as I would have liked but I’m hoping there will be enough to include his voice as I believe that people with speech disabilities should be heard especially in stories such as this. Hale talked about the early days lobbying for curb cuts and also reflected on his pessimism about the currently pressures in funding for independent living. So after 26 tapes, 27 interviews, and several research institutes it is now time to log and collate all of the material in detail. Although I was able to log the UK tapes while I was travelling, I found there were other pressures on my time in America that made it difficult to keep up with my logging and so that task remains to be completed. I plan to make extended clips from my fellowship interviews available online once the documentary is complete, hopefully around the end of 2011.

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Conclusions While Australia shares a common language with the UK and the USA, each nation has its own quite distinct cultural and political context, which can only be fully appreciated by spending time there. These differences can be important in the way something such as disability rights evolves, and I found that the disability rights movement was different in important ways in each country and that those differences were a direct reflection of their culture and politics. Both the UK and USA are currently grappling with the fall out from the Global Financial Crisis and this has resulted in enormous pressure to cut government spending in many areas including disability supports. In both countries it is a time for belt tightening and weathering the political and financial storm. The mood is one of survival and not losing too much ground rather that taking on bold visions and revolutionary policies. By contrast Australia is currently considering a National Disability Insurance Scheme, which is both bold and visionary. I spoke with many activists about this proposal and all of them were excited by the possibilities that such a scheme might open up for people with disabilities. In America they lamented that such a scheme would be impossible to implement because of the huge population with diverse opinions on everything and an overwhelming reluctance to pay additional tax. In the UK they are rightly proud of their direct payments and the strength of the social model framework within which their disability support system operates, however this philosophical progressiveness does not protect them from governments seeking to rein in spending. Activists lamented that disabled people living on benefits were becoming political scapegoats as politicians encouraged Britons to view benefit recipients with distain. In both countries disability support benefits are assessed on a person’s perceived inability to undertake paid employment and this system traps disabled people in a cycle of poverty they cannot escape. It prevents disabled people from contributing to society through participation in employment and isolates them socially, culturally and financially. In Australia a National Disability Insurance Scheme is an opportunity to create a more equitable society for people with disabilities, which encourages them to contribute to society through work. The National Disability Insurance Scheme would also offer an opportunity for direct employment of people with disabilities within its own assessment and administrative system. I believe that a better understanding of the history of disability rights in an international context will help to educate Australians about the benefits of this visionary new approach to disability support and give people the intellectual tools they need to understand why a new approach is needed.

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Recommendations The possibility of a National Disability Insurance Scheme marks an exciting time for disability rights in Australia however it is important that the Australian public understands the proposal in the context of what has gone before and the challenges faced by people with disabilities in other countries. It is my intention, with additional funding, to complete this documentary and launch the accompanying online materials by late 2011. I believe that this film can make an important contribution to the discourse Australia needs to have about the way our nation supports and includes people with disabilities. I will be working to ensure that the film is seen by as wide an audience as possible and that upon viewing the film, audiences have the opportunity to engage with and discuss the ideas put forward. Through the adoption of a National Disability Insurance Scheme this country has the opportunity to become a world leader in the way we support people with disabilities, where currently we lag behind in many areas due to a seriously under-resourced sector. The scheme is currently being reviewed by the productivity commission and still requires substantial effort to bring it to law with the support of the Australian public. The ideas put for forward by the many interviewees I have recorded for this project will be valuable no only for educating and inspiring Australians about possibilities for people with disabilities to live with greater dignity, freedom and fulfillment, but also in working through some of the details of how a National Disability Insurance Scheme might be administered and regulated. While injecting the disability support system with substantially increased funds is a primary aim of the scheme, my interviewees also point to the many other factors that help people with disabilities to increase their participation in society. Some of the issues covered in my interviews are: poverty traps that discourage people with disabilities from participating in paid employment, the right to hire and fire personal assistants, the right to live in the community in accommodation of ones own choosing, the right to receive medical and technical aides in a timely manner, and equal rights to education. This project is just one contribution to disability rights discourse at an exciting time of possibility and change in Australia where for too long there has been apathy and deprivation.

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