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THE UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES: A CAUSE FOR CELEBRATION? Matt Frost 1 Introduction Thirty years ago those with disabilities lived their lives largely separated from other New Zealanders. They were often institutionalised, particularly if they had impairments such as autism or other intellectual impairments. They did not have the same educational opportunities as other New Zealanders and they did not have the same health outcomes. But over the last three decades there has been a quiet revolution in New Zealand's thinking about disability, and we are now one of the world's leading countries around disability issues. In her paper, Hilary Stace has explored the long journey towards rights and inclusion for disabled people in New Zealand. This topic is important and special to me because I identify as a disabled person. I identify as having Asperger's Syndrome which is a form of autism. Autism was identified about 50 years ago as a separate impairment. But for me this human rights topic is not just theory or abstract – it is something in which I engage consistently. I work for CCS Disability Action, the disability support provider and advocacy organisation in Wellington, as their policy and information researcher. But disability is also my life journey and that is why changes in policy and history are so important to me.

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Policy and Information Researcher, CCS Disability Action, Wellington. I would like to thank the anonymous peer reviewer for their helpful comments on this article. Correspondence on this article would be welcome and can be sent to [email protected]

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Human Rights Research In this paper I will explore the journey for disabled people towards the UN Convention on the Rights of Persons with Disabilities, particularly New Zealand's role in that process. The title I used is deliberate, with an intentional question mark. I should say immediately that this Convention is a cause for celebration. But I wonder why we are not, as New Zealanders and as global citizens, celebrating this momentous event in human rights law, policy and development? Background to the Convention The drive towards a formal UN Convention started in the UN context in 2000 when governments such as Mexico raised the suggestion that there should be a formal Convention. But the start of this journey begins in about the 1970s and it was not necessarily a New Zealand initiative. For example, the UN developed a Declaration of Rights of Disabled Persons in 1975, which "affirmed for the first time under international law, the right of people with disabilities to have the same civil and political rights as other human beings." 2 This development was strengthened by the increasing awareness by disabled people that they there were a group that could explore their own human civil and political rights just like other civil rights movements. Some major disability studies thinking started in the United Kingdom and in the United States, but it was mainly in Britain that people began to develop that analysis within the context of sociology and other academic disciplines. Disability Studies and thinking around disability and impairment by disabled people themselves is now a thriving area. It was due to disabled people that this journey towards a Convention started. 3 There were of course the human rights instruments that were developed by the UN after the awful events of World War II such as the Universal Declaration on Human Rights (UDHR) and the covenants on civil and political rights, and economic, social and cultural rights in the 1960s. But there was an increasing awareness that the provisions of some aspects of these covenants, as good as they were, did not flow directly down to groups

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Arlene S Kanter, 'The Globalization of Disability Rights Law', Syracuse University International Law and Commerce Journal (2003) 30: 252.

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A good example of a leader in the field of Disability Studies is the British sociologist, Michael Oliver. His work, The Politics of Disablement (Macmillan, 1990), is a good example of extremely robust and leading social thinking about the rights of disabled people.

THE UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES such as disabled people in practice. A good example is the cultural and social right to live in your own home and live independently in the community. That was confirmed in the 'International Bill of Human Rights' and described in the human rights literature, but for a lot of disabled people historically, and even now, those rights have not fully flowed on. The Convention had added importance because it confirmed the rights in these human rights instruments. As mentioned above, New Zealand has a history of institutionalising people who may have had mental health concerns or intellectual impairments, and some physical, so that history is important in this context. New Zealand Disability Strategy New Zealand has often been historically socially progressive. A good example is the right legislatively in 1989 for disabled people to attend any state school. We need to realise how very important and progressive that is. I have been in a country where that is regarded as huge – that legislatively a country has said that disabled students can go to their local school. By 1999 there had been years of advocacy from disabled people and disability organisations such as the Disabled Persons Assembly (founded in 1983) for inclusion for disabled people. In 1999, part of the Fifth Labour Government's policy platform was to create a Ministry and Minister for Disability Issues. The Hon Ruth Dyson was the first Minister appointed and that was important because finally disabled people had an advocate in the highest levels of government, someone around the Cabinet table who was a spokesperson for disabled people and their families. In 2000 as part of the Labour Government's legislative programme there was a new Public Health and Disability Act. 4 Part of that Act was a provision for a strategy on disability support services to be developed in consultation with the Minister for Disability Issues. This resulted in the development of the New Zealand Disability Strategy: Making a World of Difference: Whakanui Oranga, 5 and there were several parts of that process that were world leading. To start with disabled people were well represented within the processes, not just from the consultation perspective, but actually in the development of the

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Public Act 2000, No. 91, which received the Royal Assent on 14 December 2000.

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Ministry of Health, 2001.

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Human Rights Research Strategy. For example my employer Paul Gibson was one of several disabled people who were part of that group – the Strategy Reference Group – that developed a draft Strategy and took it out to the sector for consultation. They developed the Strategy in the spirit of partnership and development. The cochairs of that Strategy Reference Group were Dr Jan Scown, who is now the first Director of the Office of Disability Issues, and Robyn Hunt, a disabled person who is now a Human Rights Commissioner. Robyn wrote a wonderful piece on people with disabilities for the background papers of the Royal Commission of Social Policy and is a leader on thinking on disability issues. 6 As co-chair she had a key role. The Strategy which was finally produced and released on 30 April 2001 had some key elements. It had 15 core objectives which acknowledged that disabled people should have leadership fostered by themselves and in partnership with them. One objective that I am particularly fond of is fostering best education for disabled people. 7 That includes acknowledging that disabled people have the absolute right, as mentioned, to attend their local school with others, but also acknowledging that there may need to be supports provided in order for that educational provision to come about. However, what is most important for me in terms of the Disability Strategy are two core statements in the vision of the Strategy. The first one is that as with other New Zealanders, disabled people aspire to a good life. 8 Given the history Hilary has outlined in her paper, this was a core statement because for a lot of New Zealanders there was a view that disabled people could not aspire to a good life. The other statement was that the Strategy talked about a fully inclusive society, and in defining that declared that New Zealand would be inclusive when people with impairments could say that they lived in a society that highly valued their lives and continually enhanced their full participation. 9 I would recommend that anyone who reads this paper reads

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Robyn's paper can be found in The Report of the Royal Commission on Social Policy (The April Report), Volume Four (Social Perspectives), April 1988 (The Royal Commission, Wellington) 767- 805.

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It is Objective Four.

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The New Zealand Disability Strategy: Making a World of Difference – Whakanui Oranga (Ministry of Health, Wellington, 2001) 1.

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Ibid, 5.

THE UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES the Strategy which is a wonderfully affirming but very practical policy document. 10 New Zealand's Contribution to the Convention's Development In 2002 the first Ad Hoc Working Group came together on the Convention. There was a view that this needed to happen reasonably quickly so an Ad Hoc Committee was developed at the end of 2001. 11 Then in 2002, after the first session of the Committee in July/August, the member states of the Committee said that they reaffirmed the need to promote and protect the equal and effective enjoyment of all human rights and fundamental freedoms by disabled people, and were aware what contribution a Convention could make for disabled people. An important point was that the Convention was to be one based squarely in human rights discourse rather than welfare discourse. The momentum towards disabled people's rights continued in New Zealand. In 2002 the Minister for Disability Issues acknowledged that there needed to be a mechanism for coordinated policy development, similar to the Ministry for Women's Affairs, which would be small and compact but able to think about policy issues across government and how they would impact on disabled people. So an office was established within the new Ministry for Social Development – the Office for Disability Issues. 12 The development of thinking around the Convention could have stayed within the Office for Disability Issues but (and this is one thing I would like to stress in terms of this human rights treaty) there was a view that this Convention had to be done in partnership with disabled people and the organisations that worked with them because it was they who needed to articulate what their wishes for a good life were. So New Zealand took that view to the UN. In 2003 Cabinet agreed that New Zealand was well placed to take an active role in the development of the Convention. Part of that involved working with organisations like the Human Rights Commission and the Ministry for

10 There is also a pictorial version, which is useful to consult if one wants to get a sense of how to write in 'plain language' for people with intellectual impairment. 11 By General Assembly Resolution 56/168. 12 The Minister of Disability Issues, the Hon. Ruth Dyson, and the then Minister of Social Services and Employment, the Hon. Steve Maharey, announced the formation of the new office on 27 March 2002.

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Human Rights Research Foreign Affairs and Trade, but also meant engagement with NGOs such as the Disabled Persons Assembly to get the input from disabled people. Even more important was that disabled people were part of the negotiation process. So the government set aside money so disabled people not working for government could be part of the negotiating teams. These included Robyn Hunt and Gary Williams the CEO of the Disabled Persons Assembly who went to New York (lucky person!!) about 10 times during the Convention development process. 13 Another disabled person with a key role in the Convention development was Robert Martin. He is a good example of the partnership between government and disabled people. Robert is from Wanganui and was a resident of the Kimberley Institution before it closed in 2007. He was part of the Convention process as President of Inclusion International, a self-advocacy group for people with intellectual impairment, and had the great honour of speaking at the UN. Robyn Hunt has described Robert as probably the first person with intellectual impairment to do so. His contribution to disability issues generally was acknowledged in the New Year's Honour's List this year with the award of a Membership of the NZ Order of Merit. 14 As a young person with autism I am delighted to say that Robert is a real hero for me. New Zealand Government Paper on the Convention and Views of Disability In November 2003 the Office for Disability Issues developed a paper on the Convention and what it should include. This paper was a key document in the journey of the Convention from New Zealand's perspective because it explains very clearly and concisely certain concepts that needed to be in it.

13 The Cabinet Paper outlining New Zealand's future role was SDC 03/54 which can be downloaded from www.odi.govt.nz. 14 Robert is also present Deputy Chair of the new Frozen Funds charitable trust. In the 1980s welfare and social security payments that should have been paid to people with intellectual impairment when they were in institutions was kept from them. The government recently acknowledged that was an unsatisfactory and illegal state of affairs and set up the Frozen Funds charitable trust because those funds were frozen to some degree for people with intellectual impairment. That trust now has money to spend on projects such as education, knowledge around the history of institutionalisation, and practical programmes for those who were institution survivors.

THE UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES Underpinning this paper was the understanding of disability that had been developing over the years by the disability rights scholars who I mentioned earlier. I will explain further. In the New Zealand Disability Strategy, disability and disablement are understood not as something that people have. People do not have disability. They have impairments such as autism, cerebral palsy and spina bifida. But disability is a social process and disablement is a process. 15 For example I have Asperger's Syndrome, a form of autism which is an impairment. I am only disabled when society puts social, physical and environmental barriers in the way of my attempt to be part of my community. So as part of my impairment, I may need to have time out from environments that I find stressful, such as my work environment. If my work environment does not provide for that or makes the environment more stressful then they have disabled me. I have not disabled myself – they have disabled me. Another good concrete example is physical access. For some people with impairments access to buildings can be difficult, particularly if they are wheelchair users. But that is not because they are wheelchair users, it is because the building is not designed so that they can enter or enter appropriately. For example, I have seen buildings in New Zealand where wheelchair users have had to enter round the back and I think that is unfortunate and an unacceptable affront to the dignity of those people. That is an example of a disabling society. The other thing that the paper says quite clearly is that disabled people are not a homogeneous group, but because disablement is a social process, people with impairments such as cerebral palsy or autism share a common experience of societal or environmental barriers. 16 So that 'social model' of disability was a key aspect of the Convention. The 2003 paper also talked about a typology of models to inform the Convention and proposed four core considerations for developing, promoting and enabling the rights of disabled people. 17 First drafters of the Convention 15 New Zealand Disability Strategy, 3. 16 New Zealand's View of a Convention on the Rights of Disabled People (Office of Disability Issues, Wellington, 2003) 2. This document can also be found at www.odi.govt.nz. 17 The typology and models underlining the core considerations can be found at ibid, 3-4.

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Human Rights Research needed to ensure that its elements covered all aspects of life, acknowledging that disabled people: take part in political processes; are part of families; they wish to have income, not just subsistence income, but disposable income; and that they are part of intimate and personal relationships and wish to explore things like sexuality. The final Convention document covers these areas extremely well with issues like inclusive education, political participation, leisure and having fun for disabled people. Secondly, drafters needed to consider the aspiration for an 'ordinary' life for disabled people. Part of the context for that recommendation was the development of a 2003 report To Have An Ordinary Life by the New Zealand National Health Committee on the goals, aspirations and situation of people with intellectual impairment. 18 That report is quite sobering and anyone with a human rights background should read it in my view. The Committee stated in its Foreword that for the first time in the 10 years it had produced reports they realised were dealing with a group of people for whom the basic elements of citizenship were not being taken seriously. 19 For a New Zealand which saw itself as egalitarian and socially just, it was a wake-up call. It led to thinking about what could enable an 'ordinary' life for disabled people. Thirdly, the Convention needed to give special consideration to those people who experience what the paper called double disadvantage and that includes women, ethnic, minorities and children. Articles 7 and 8 of the Convention deal specifically with the question of double disadvantage around access for women with disabilities to basic provision and one statistic that stands out is that only 1% of disabled women in some countries are literate. This is an indication that, even with instruments like CEDAW, there are still issues for groups such as disabled women and children. And fourthly, the Convention needed to consider the whole life-cycle and that means guaranteeing the rights of disabled people regardless of how they acquired or developed their impairment. That means considering the needs of disabled children and adolescents (because disabled young people do go

18 To Have an 'Ordinary Life: Kia Whai Oranga Noa: Community Membership for Adults With An Intellectual Disability (National Health Committee, Wellington, 2003). 19 Ibid, 6.

THE UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES through a period of adolescence), and adults and senior citizens, regardless of the type, the cause or the severity of the impairment. One other thing that the paper talked about clearly was that the Convention should guarantee the core human rights that instruments such as the UDHR guarantee to all people. There is a saying within the disability sector that the Convention did not give any extra rights to disabled people that they did not have already, but it quantified them and placed them in a disability specific context. So, for example, disabled people have always had the right to vote, but what the Convention says very clearly in Article 29 is that people with visual impairment may require assistance in terms of things such as braille voting papers. People with intellectual impairment may require some further explanation about their rights to vote, and what the Convention makes clear is it is their absolute human right to receive that support. Ambassador McKay and the Ad Hoc Committee In 2005, New Zealand's Permanent Representative to the UN, Ambassador Don McKay, was elected to the chair of the Ad Hoc Committee that was developing the Working Group to write the text of the Convention. 20 That was an indication of his standing (he is my non-disabled New Zealander of the decade) and this country's role. I have had the pleasure of meeting Don on a couple of occasions and he struck me as someone with an absolute commitment to the UN, human rights and the rights of disabled people. From conversations I have had with disabled people present during the negotiation, he got a sense of the balance between the formal 'diplomatic' parts of the Convention development process and the key nature of involving disabled people in that process. Don has written academic papers about the process of the Convention from his perspective. That chairmanship rolled over after the end of his New York posting. In 2005 and 2006 the Ad Hoc Committee met and continued work of the Convention. Gary Williams tells fascinating stories about the development of the Convention such as meetings at 4 am in various UN cafeterias. But towards the end of 2006 the group came to a place where they could acknowledge that the Convention development process was almost at an end.

20 That event was celebrated by a government press release issued by the then Minister of Foreign Affairs, the Hon. Phil Goff, on 21 April 2005: 'Nzer (sic) to Chair UN Disabilities Committee'.

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Human Rights Research There were unique 'disability issues' which had to be considered in that process. For example the sign language interpreters who were a vital part of the Convention development process for people with hearing impairment had to leave on the last day of the process at 8 pm and there was no give or take on that. The Convention text was finally agreed at 10 to 8. This says something not just about how UN processes work, but also the importance of the Convention to the various parties. For the disabled people involved there were compromises over key questions such as bioethics. And the officials learnt about what was core and vital to disabled people around such questions as their legal capacity. Convention Signing 30 March 2007 was an incredibly special day in terms of disabled people's rights because on that day the Convention was opened for signature at the UN headquarters in New York and a record number of states – 81 – signed on day one. That record shows the world-wide acknowledgement of need for the Convention. Some raw numbers also show how wide-ranging this Convention is: it affects 650 million people world-wide plus their families and whanau; and the Interparliamentary Union (IPU) estimates the direct impact to be on two billion people. The IPU have developed an excellent handbook on how legislators world-wide can bring the Convention into a domestic context. 21 30 March 2007 was a magnificent day and Minister Dyson was invited to speak as a mark of New Zealand's standing. 22 Franklin Roosevelt International Disability Award At the end of 2007 New Zealand won the Franklin Roosevelt International Disability Award for the country that was regarded by the World Council on Disability and the Franklin and Eleanor Roosevelt Institute as the one that had most furthered inclusion around disability issues. That is a source of celebration for us, particularly for a country whose government says that part

21 From Exclusion to Equality: Realising the Rights of Persons With Disabilities (Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities and its Optional Protocol) (UN and Inter-Parliamentary Union, Geneva, 2007). Unfortunately it is in pdf rather than Word so some parts are not particularly accessible for people with visual impairment. 22 Her speech can be found on the New Zealand Executive website www.beehive.govt.nz.

THE UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES of their mandate is around national identity, families young and old, and economic transformation. It is certainly something that I believe New Zealand can celebrate as part of our national identity and our national story. I have a personal interest in the Franklin Roosevelt Award. I am fortunate to have been selected to support the President of the Disabled Persons Assembly, Mike Gourley, in receiving the part of the prize reserved for NGOs on behalf of three of them: CCS Disability Action (who I work for); DPA (I am Wellington president); and People First (because I support their kaupapa and identify as someone with a form of intellectual impairment). While there we will join a celebration of the passing of the Convention into international law as it has now been ratified by enough countries. It will be amazing to go to the UN not just as a New Zealander acknowledging our history, but as a disabled person taking part in this celebration of ratification. I will add a postscript to this article outlining for me personally what that experience and that human rights milestone meant to me. Conclusion: Celebrating the Convention It brings me to the question, why are we not celebrating this as a core part of our national identity and our national story, even our human rights story, as being a good international citizen? There was very little media coverage around the Convention and its signing. If we compared that, for example, to the UN Convention on the Rights of the Child then we would be celebrating that handsomely. The underwhelming reaction perhaps says something about our ambivalence towards our attitude to disability and disabled people. One of the first opportunities which will be possible from the ratification of the Convention is to continue to develop an awareness of the skills that disabled people have, to help break down that ambivalence. When that happens families will feel supported, and disabled people will be a core part of the community and of this wonderful country we call Aotearoa. Postscript I wrote this paper, with the assistance of my friend Hilary Stace, before I went away to America to celebrate both the entry into force of the Convention and the Franklin Roosevelt Award presentation. In reviewing the paper, I feel there is probably another one which could be written to explain the full significance of the award for New Zealand as a country! But I feel there are a couple of points which I perhaps did not emphasise enough and would like to do so now.

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Human Rights Research The first of these is to acknowledge that as always in the development of instruments such as the Convention, it was (and will continue to be) a team effort. While I was in the United States, I had the pleasure of meeting the staff at the New Zealand Mission to the UN in New York. It became clear to me that they all felt a great sense of pride in the leadership role which we as a country took at the UN. While I am still not sure that we have fully embraced the potential of the Convention domestically, I do want to stress that key international figures representing our country have done so. What I especially value as a disabled person is the way in which they have tried to embrace disability issues, and the wisdom and 'lived experience of disabled people' within a wider human rights discourse. The second thing I want to stress is that the UN is an absolutely massive organisation. People cannot get a sense of just how challenging it must have been to negotiate the various complex dynamics of the UN until they have been there for themselves. One small story explains it well – it took Mike and myself two hours to get security clearance for the UN. Whilst waiting in line for this I could not help thinking that if it takes this long to do something so relatively simple, it is amazing that the Convention was agreed in such a short time! But I also got a sense of why that might have been the case by the attendance of the Secretary-General, Ban Ki-Moon, and Mrs Ban at both the award to New Zealand of the Franklin Roosevelt prize and the entry into force of the Convention. There is a genuine sense at the UN that human rights for this large group of people have been denied for far too long, and a desire at the highest levels to be involved. And New Zealand is seen as a genuine international leader in that process. Everywhere we went during our stay our record on inclusion for disabled people was commented on highly favorably. I also think that Mike and I demonstrated something important to people as two disabled people supporting each other. The last thing I want to clarify is that I do think that the attendance of the Governor- General and his party shows how importantly our government sees these issues. The challenge for us as a nation will be responding to the comments made by His Excellency when the award was presented to the government that we still have a lot of work to do in order to fully include disabled people in New Zealand society. But the wonderful thing about events like the award is that it reinforced to me how much we have to proud of. It should encourage all New Zealanders to celebrate, to reflect and to take

THE UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES positive action towards increasing human rights for disabled people in this country. Hopefully telling the story in this way helps us towards that goal.

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