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The previous post mentioned Martin Sullivan’s keynote address to the Disability Studies Conference in Sydney. Although it only briefly mentions autism specifically, it is a rare academic assessment of disability issues locally, and the links between the Treaty of Waitangi and the NZ Disability Strategy.   

Keynote address to the Disability Studies Conference, Disability Studies Research Centre, University of New South Wales,Sydney, June 2009

Dr Martin Sullivan, MasseyUniversity, Palmerston North  

Introduction

This week is a significant time in the disability communities of Aotearoa and Australia because it was about a year ago we lost two major disability activists, teachers and researchers.  I speak of Associate Professor Anne Bray and Associate Professor Christopher Newell and would like to take some time to remember and honour them.

I doubt many on this side of the Tasman would have heard of Anne Bray, let alone known her.  Anne’s younger brother had Down syndrome but he lived at home when children with Down syndrome were sent to institutions. Anne began her teaching career at Canterbury University in 1974 before being appointed to the position of lecturer in the Faculty of Education at the University of Otago. Disability issues always featured prominently in her teaching.  In 1984 Anne was appointed director of the Donald Beasley Institute (DBI) in Dunedin which had been established for research work in the area of intellectual disability.  The guiding principle of all Anne’s work was that of social justice and had the object of improving the lives of intellectually disabled people. Anne and the DBI were at the forefront of the movement to close the large psychopaedic hospitals: she and her team provided the empirical evidence for their closure, the how of the closure, and then the empirical evidence of the success or otherwise of those closures.  She built a strong team of researchers, supervising many through their PhD studies in conjunction with the University of Otago.  She edited the New Zealand Journal of Disability Studies (NZJDS) for many years before handing the editorship on to me when she contracted cancer.  Anne’s legacy is her fearless advocacy for disabled people, the DBI and its ongoing transformative – emancipatory research with intellectually disabled people in Aotearoa/New Zealand (ANZ).

Associate Professor Christopher Newell of the Tasmanian School of Medicine was a well known and much loved disability activist and intellectual in Aotearoa New Zealand.  So much so that he was accorded honorary Kiwi status whenever he visited.  He was in much demand as a keynote speaker and would do at least a conference a year in Aotearoa.  News of his death led to an outpouring of grief on our side of the Tasman. We held a special remembrance ceremony at which a number of us from the disability community spoke of his lasting impact and the lessons he had taught us in his gentle, persuasive way.

Christopher began his working life in a sheltered workshop and ended up as an Associate Professor lecturing medical students in ethics.  Often he would lecture his students from his hospital bed, which he would get wheeled into the lecture theatre in the Hobart Hospital.  Christopher was an academic activist to the core.  He was also an Anglican priest who chose not to take the high road but trod the backroads and byways where he befriended, counselled and supported the abandoned, destitute and lonely – many who were disabled people.

Christopher’s big thing was about “moving disability from other to us”.  He did this on a personal level among disabled people and struggled to inculcate it in the consciousness and public life of Australia.  He was instrumental in approaching me to extend the NZJDS to become an Australasian journal.  He will live on in journal we are planning: Disability Studies: Aotearoa and Australia.  He lives on in his work, and, more importantly, in the hearts of the many he touched and whose lives he transformed.   

Two mighty totara have fallen in the forest of Tane.  Haere ra Christopher.  Haere ra Anne.

In preparing for this key note, I had a look at the abstract I had written some months earlier to remind me of what I said I would say today. I thought it prudent to have a look at some of the work of my Australian colleagues so as to avoid carrying coals to Newcastle and looking rather stupid.  In one paper, Helen Meekosha, makes the point that the insights emerging from Australian disability studies seem to have little relevance to the makers and shakers in disability studies in the UK and USA who are immersed in their own projects (and, I might add, rivalry).  It then occurred to me that disability studies in Aotearoa New Zealand are probably just as irrelevant and unknown to Australian disability studies and scholars as their’s are to the North. Hence, rather than sticking religiously to my abstract, I though this might be a good time to tell you what has been going on across the ditch in disability studies, disability policy and disability generally.

Disability Studies 

The only programme in ANZ dedicated to disability studies is the one I teach.  It is a Post Graduate Diploma in Arts with an endorsement in Disability Studies.  A number of students go on to take an MPhil which gives them a masters degree by completing a disability related thesis. 

The programme began in 1993 with a paper called Disability Studies which concentrated on theory, policy and methodology.  It could be taken as an elective in either the Masters of Social Work or MSP programmes.  In 2003 we got permission to offer a PGDipArts with an endorsement in Disability Studies, so a paper concentrating on the Disability Rights Movement, rights, advocacy, ethics and contemporary issues was added.  I would like to add another paper so I could have a named Masters degree but since funding is tight in the tertiary sector the orders from on high have been to cut rather than add papers. People who take the PGDipArtsDS include disabled people, parents and, mostly, people working in the sector.  Next year I begin teaching a 3^rd year paper, Disability in Society, at undergraduate level which I hope will serve as a feeder into the diploma course.

When asked what disability studies are about I tend to say “The social & political aspects of disability”. I’ve modelled the programme more down the British line than the American, so it’s rather paradoxical that an American theorist, Tobin Siebers, more accurately captures what I try to do in the Diploma when he says:

The number one objective for disability studies … is to make disability an object of general knowledge and thereby to awaken political consciousness to the distasteful prejudice called “ableism”. (2008, 81)

I do this by exposing my students to what disabled writers and their allies have to say about disability in contemporary society.  Many find the whole ‘social oppression’ thesis quite shocking; and, indeed, it is shocking: what happens to most of us with impairments in today’s society is shocking. 

I must admit I sometimes feel a bit of a fake teaching the social oppression thesis because here I am sitting in front of class, highly educated and earning a good salary.  My position and income gives me certain freedoms and choices my students don’t have or are ever likely to have.  And I think this is why I like Siebers’ definition so much; it reminds me that no matter how privileged a position I occupy within academia, I am still subject to ableism both within and without academia.

But I digress.

Other programmes featuring disability in ANZ are mostly taught in the Colleges of Education which are involved in teacher training, specifically special needs education.  At the Massey University College of Education, a Centre for Research into Inclusive Education teaches papers firmly based on the social model as do the programmes at Auckland and Canterbury Universities.  

There are of course students dotted around the various campuses completing theses on disability related matters in disciplines such as anthropology, sociology, education, psychology and public policy.  These usually only really come to my attention when they are finished and if I get to examine them.

Numbers at Masters and PhD thesis level have increased in recent years thanks to scholarships established by the Health Research Council.  These scholarships are aimed at increasing the research capacity in the disability area – especially among post grads with disability.  A few years back the HRC asked Anne Bray, Alan Clarke and me to review their disability funding portfolio.  We found that practically all funding had been knobbled by clinicians doing ‘cause’ and ‘cure’ type research.  We introduced HRC to the social model and argued they should direct funds to researching the well-being of impaired people living in a disabling society. They agreed (and have since been true to their word) and we then said “well to do this research we need to increase capacity amongst disabled people by funding them through advanced study.”  Hence the scholarships.

What made this all possible was the policy climate of the day.  As you shall see, we had a NZ Disability Strategy in place and a government with a well developed disability consciousness.  I think it important to spend a bit of time on policy and disability policy at this point, because much of what happens within Disability Studies in Aotearoa is very much determined by what is happening in policy.  By this I mean that when teaching a research based degree, I find that students mostly look to apply disability theory in a critical analyses of contemporary disability policy.

Disability Policy Aotearoa 

To understand social policy in NZ one has to understand the founding document of ANZ, the Treaty of Waitangi.  Te Tiriti o Waitangi was signed on 6 Feb 1840 between Maori and representatives of the British Crown.  It is a short document consisting of three articles.

Article the first [Article 1]

The Chiefs … of New Zealand … cede to Her Majesty the Queen of England absolutely and without reservation all the rights and powers of Sovereignty which [they] exercise or possess…

Article the second [Article 2]

Her Majesty … guarantees to the Chiefs and Tribes … the full exclusive and undisturbed possession of their Lands and Estates Forests Fisheries and other properties which they may collectively or individually possess … but the[y] … yield to Her Majesty the exclusive right of Preemption over such lands

Article the third [Article 3]

… the Queen of England extends to the Natives of New Zealand Her royal protection and imparts to them all the Rights and Privileges of British Subjects. 

But to confuse matters, two texts were signed: one in English and one in Maori.  About 40 Chiefs signed the English version, 500 the Maori version.  I’ll return to these in a moment.

The treaty was by and large ignored by settler governments and following the land wars of the 1860s, much of Maori land was alienated via confiscation, legal and illegal land deals, swindles etc and with the loss of land the loss of language, culture and traditional kin based society followed as Maori drifted to urban centres. Here the ravages of alcohol and disease took further toll. 

By the 1960s, Maori were largely an urban, dispossessed people at the bottom of all social indicators.  Clearly the policy of assimilation was not working and one of biculturalism was suggested as the way forward for Maori.  Biculturalism is a type of cultural pluralism characterised by two partners rather than several.  This was more in keeping with the spirit of the Treaty of Waitangi which implied a partnership between Maori and the Crown. By the 1970s biculturalism had become the basis for Maori policy and through the next decade it quickly became the goal for all government departments.  By the 1990s, substantial progress had been made to at least introducing a cultural dimension and increasing the Maori workforce in the public sector (Durie, 1994). 

Parallel to, and giving impetus to movement within the state, was a renaissance in things Maori within urban settings. In the early 70s a number of young urban radicals formed Nga Tamatoa and began discussing their alienation from their Maoritanga; ie their loss of language and connection to their ancestral land, marae and their culture.  One faction within Nga Tamatoa modelled themselves on Black Power leaders in the US while a more conservative, university educated group set about supporting Maori migrants to the cities to find jobs, representing Maori before the courts, they set up kohanga reo or language nests to teach their children the language, established year long courses for training teachers in the reo and so on. So from the 70s what became known as the Maori renaissance in things Maori dominated the political & cultural consciousness of Aotearoa.  The Treaty of Waitangi, breaches by the Crown and calls to honour it were central to this renaissance (Walker, 1990; Durie, 1994).  

As I have mentioned there were English and Maori versions of the Treaty and this resulted in much debate around interpretation.  [See Durie 1994 p.85 for diagram] Maori argued that a greater degree of Maori authority was promised in the Treaty, while the Government argued that a full transfer of sovereignty had occurred.  In an attempt to reach some sort of compromise it was decided that it would be easier to follow the principles underpinning the Treaty, rather than the actual text itself.  A series of Treaty Principles subsequently emerged in a number of forums including the 1988 Royal Commission on Social Policy (RCSP), the courts and the Crown/government.  These principles were used to guide the implementation of the Treaty in various settings. The ones which concern us in Disability Studies are those which the RCSP formulated to guide the development and implementation of social policy generally.  These are the principles of partnership, participation and protection.  

Partnership

·        sometimes used to describe a working relationship between Maori Iwi (tribes) or hapu (sub-tribe) and government agencies

·        implies an association of equals but it more often refers to a reassignment of government authority to a tribal group within constrained guidelines – I fear that this is about as good as it gets in some of those partnerships between disabled people and the state or professional bodies 

·        symbolism – Treaty partners working together to achieve mutually acceptable goals

Participation

·        refers to Maori involvement in a particular activity or sector eg District health boards (hospitals and their regions)

Protection

·        this relates to Article three in the Treaty which guarantees Maori the same rights and privileges as other New Zealanders

·        implies “active protection” which requires Government to intervene positively rather than just let Maori take their chances alongside other groups ie provide culturally appropriate services

Many within the disability rights movement in NZ see themselves as occupying a similar position to Maori in mainstream society.

·        Maori were colonised by the British crown; disabled people have been colonised by medical and associated professionals;

·        Maori were made strangers in their own land; many people with disability were locked up in institutions and made strangers to their communities;

·        Maori were forced to participate in a biased, mono-cultural system; disabled people were excluded from participating in their communities on their own terms;

·        Maori are discriminated against by racism; disabled people by disableism/ableism;

·        Maori have high rates of failure in an institutionally racist education system; people with disability are routinely excluded from an ableist, mainstream education system;

·        Maori are subject to higher rates of unemployment and lower rates of income than non Maori; disabled people have high rates of unemployment and many are condemned to survive on subsistence level benefits;

·        Just as Maori have had tino rangatiratanga denied and made subject to British law, people with disability have had their humanity denied and made subject to pity, medicalisation and welfarism;

·        Just as Maori have been granted a limited form of tino rangatiratanga over tribal resources, many disabled people have been granted limited control over their lives within the confines of services, individual life plans, group homes and so on.

New Zealand Disability Strategy – our Treaty? 

Given these parallels, it is not surprising that many disabled people in Aotearoa came to the conclusion that they needed their own treaty; a treaty to establish a genuine partnership with government; a treaty to guarantee our equal participation in society; a treaty which affirmed the active protection of our citizenship rights by the state.  With the election of a Labour led coalition government in 1999, this seemed a distinct possibility because in opposition they had promised us a Minister and Office for Disability Issues and the development of a NZ Disability Strategy. 

After extensive consultation with disabled people, the NZDS was adopted in 2001.  It is underpinned by the social model and aims to create a non-disabling society (P.5) by progressively removing the barriers to participation which confront impaired people.  This is captured nicely in the following:  

Underpinning the New Zealand Disability Strategy is a vision of a fully inclusive society.

New Zealand will be inclusive when people with impairments can say they live in:

‘A society that highly values our lives and continually enhances our full participation.’ (NZDS 2001, p.1)

Fifteen objectives are set out for the Government to achieve on its way towards a non-disabling society.  Ministries, departments and state agencies are required to report on the progress they have made in implementing the NZDS in their annual reports to parliament.  In the 2004/05 Progress Report, it was noted that a growing number of crown entities and territorial authorities were willingly taking part in Strategy implementation even though they were not required to. This is encouraging.  As is the broad, cross party support for the Strategy.  

Given this, many disabled people in Aotearoa New Zealand now see the NZDS as their treaty with the Government to build towards a society in which they can participate on their own terms and as much as they want. It also implies a partnership between disabled people and the government as well as the active protection of disabled people by the government.  Such partnership was highly visible during negotiations around the UN Convention on the Rights of Persons with Disabilities; from the beginning the NZ delegation was the only one to consist of State officials and disabled people including one with intellectual disability.

The NZDS has its limitations.  For example, it only applies to the state and those contracted by the state to provide services. And while its philosophy is right, the objectives could do with refinement, and implementation is quite lumpy.  But what it does provide is a multitude of entries for analysis and critique within disability studies.   And then, two questions are critical: is it working for Maori? Is it working for non Maori?

And therein lies the rub.  When I, a pakeha, am talking about disability, am I talking about the same thing as when Maori are talking about disability?  Up to twenty-five years ago it would have been acceptable for me to go out, do the research and become the ‘expert’ on Maori and disability.  This is unacceptable today because of Treaty consciousness, tino rangatiratanga and the reality that only Maori can speak for Maori with any authenticity.  And this presents a problem insofar as there are very few Maori disability researchers in the field.  

Maori and disability

One source, Maori Concepts of Disability, by Jo Kingi and Anne Bray reveals the potential for our talking past each other.  When Kingi asked Maori what the word disability or the concept disability meant to them, they generally saw it in terms of the effects of colonisation: 

It’s disability to have your land taken off you, it’s a disability to have your family dissolved and shifted to an urban environment where you’ve never been before.  It’s a disability to be told that you can no longer grow your own food so you have to get a job in a system that has been set up by white people for white people….  (Kingi and Bray 2000, p.8) Maoris are being brainwashed into doing things the pakeha way – that’s disability – it’s got to be done the Pakeha way – brainwashed. (ibid. p.8) We are disabled in the Pakeha world – in our world we’re not. (ibid., p.21) Poverty was seen as more disabling than any physical, psychiatric or sensory impairment. Drugs, alcohol and tobacco use by Maori were issues that were also perceived as disabilities by Maori (ibid., p. 12).   Policies of assimilation, especially the legislation which made the teaching of te reo Maori (language) in primary schools illegal and which remained in force until 1967, were seen as especially disabling.  One person spoke of his loss of language as his disability. Most spoke of the process of colonisation and its particular effects on identity and self worth as a disability:  We have a tendency to think of people in wheelchairs but I think from my understanding, and no doubt others, that disabilities is that people have lost their knowledge of whakapapa [genealogy] and how they are related to whanau, hapu and iwi [family, sub-tribe and tribe].  (Kingi and Bray 2000, p. 18) When asked if they thought there was a difference between Maori and pakeha concepts of disability, many commented on just how different the worldviews actually are:  Well I think the Maori health view is far more holistic than the pakeha health view – it takes into account the whole being and I believe the pakeha health view separates it – fixes one thing (ibid., p. 22)  Well I know we are different because we accept people as they are. (ibid.) There was no such things as manic-depressives or schizophrenic in Maoridom… . (ibid.)  It is important to note that Kingi stresses there is no such thing as ‘the’ Maori view on disability and what she presents is ‘a’ Maori view of disability.

This tends to be born out by an earlier report He Anga Whakamana. A Framework for the Delivery of Disability Support Services to Maori, (1995) which takes account of the effects of impairment as well as those of colonisation and assimilation.   In one of the earlier quotes, a participant mentions the loss of whakapapa and the knowledge of relationships between whanau, hapu and iwi as a disability.  This person is talking about whanaungatanga or relationships; the sense of family connection built through shared experience and working together which gives people a sense of belonging.  Whanau translates into extended family or family group.  So Maori do not see themselves as individuals so much as part of an extended group, be it whanu, hapu or iwi.  Identity and place in the world is closely tied to these groups.

This has implications for disability studies and disability support services, because while it may be appropriate to treat disabled pakeha as individuals, disabled Maori must always be seen as part of a whanau.  This already happens to a certain extent when Maori are negotiating over services etc. They are encouraged to bring members of their wider whanau to support.   When my pakeha friend is having another confrontation over DSS for her autistic daughter, I usually attend these meetings as whanau support even though there is no blood relationship between us.  This is entirely consistent with contemporary meaning of Whanau.  I guess you could call this biculturalism in action.  In summary, it is evident that disabled Maori see themselves as Maori first and as disabled people second.  This has huge implications for disability studies and the disability movement in Aotearoa in terms of developing a true partnership with Maori if disability studies and the movement are to have any relevance.   

It also means that disability studies in Aotearoa has to become bicultural and within that bicultural framework provide active protection for Maori academics and Maori students.  Active protection suggests to me a parallel development in which Maori have rangatiratanga and are resourced to do disability studies according to tikanga and in a culturally appropriate way.    Just as the Treaty of Waitangi implies one nation, two peoples, a Treaty centred disability studies programme will be bicultural and involve exchanges and opportunities for learning between te Ao Maori and Pakeha worldviews on disability I think it would be very useful for disability studies in both Aotearoa and Australia to do some research into whether any indigenous disability movements have developed, and if so, what forms do they take, their culture, objectives and so forth. I think we have a lot to learn from indigenous people when it comes to disability. 

On that note I would like to finish.  I have attempted to provide some insight into disability studies in Aotearoa NZ by unpacking the cultural context which influences both disability policy and disability studies.  I have done this at the risk of conveying a view of disability studies as been narrowly policy focused and obsessed.  Nothing is further from the truth as all the debates about the utility of the social model, of structural as opposed to poststructual approaches, the problem of impairment and how to bring the body back in without slipping into medicalisation etc, etc are alive and well on our side of the ditch.  These are worthy debates but, perhaps it is time for us in the global south to be shifting our attention to what is distinctive about disability in our part of the world, what we can learn from it and how to ameliorate it.  

Durie, M.  (1994) Whaiora. Maori Health Development. Auckland: OxfordUniversity Press.

Kingi, J. and Bray, A. (2000) Maori Concepts of Disability. Dunedin, N.Z.: Donald Beasley Institute Inc.

Ratima, M., Durie, M., Allan, G., Morrison, P., Gillies, A. and Waldon, J. (1995)  He Anga Whakamana. A framework for the delivery of disability support services for Maori. Wellington, N.Z.: Core Services Committee, Ministry of Health.  

Siebers, T (2008) Disability Theory. Ann Arbor: The University of Michigan  Press.

Walker, R. (1990) Ka Whawhai Tonu Matou. Struggle Without End. Auckland: Penguin Books.