Access by Various artists

12

Changing Shape

by Chelle Hope

From the moment my leg left my body, it became medical waste. It’s not even that anymore, I’m sure. It’s … What is it? My leg existed in space and time as part of me and what I understood myself to be and it is no longer there. Amputation has made me think about who I really am. It has been at once a challenging and life affirming experience. The amputation of my leg continues to affect my identity and how I think about myself.

I am an amputee now. There’s a word for it and everything. I have resisted joining any kind of support group, organisation, or society whose members are amputees and define themselves as such. I’ve never been much of a joiner and I’ve never been one for consolation. I’m sure these aspects of my personality make my life harder than it needs to be. I believe life should be hard. That is both a blessing and a curse. I never say, or even dare think, that life isn’t fair. Nobody ever promised it would be.

After my surgery, I felt something I wasn’t prepared for; I was immediately self-conscious. In the beginning, this was debilitating. I didn’t want to see many people post-op when I was in hospital. There were only a select few who I allowed into my room to begin with. I had a room to myself. When I got out of hospital, I found it hard to muster up the courage to go out anywhere. I stayed at my dad’s place for a few weeks and the idea of going home was entirely daunting because I knew I would have to go out and be seen by people and they would see that I only have one leg. I was perplexed as to why I should care. After all, how people see me had never bothered me before.

That I would feel weird and self-conscious about my stump is, even to me, absurd. People have always stared at me. They have always noticed my wheelchair. They have always said really stupid stuff, both well-meaning and out of cruelty. I was so used to that kind of attention, I had unconsciously trained myself to block out the vast majority of it. When I joined the world again after my surgery, for a long while I could not get past the idea that everyone was staring at me. So many people stare at me when I’m out and about and I notice them now because I’m looking for it. I realised after a while though, that I probably wasn’t getting much more attention than I’ve always had, it was just that I felt uncomfortable with my new identity as an amputee and I was projecting that onto the people around me who had always looked.

Before my amputation, I was scared all the time. I couldn’t do anything much because I didn’t have the energy for it or I was too sick or I was waiting to get sick and I was scared. I’m still trying to get used to the idea I might not have to be hooked up to life saving drugs in the near future, that I might not be a patient again for a while. The thing that I thought was going to kill me is gone. I am no longer chronically ill. That sentence, that thought, has just this second dawned on me. It’s all taking a lot to process. There’s so much involved. The good and the bad consequences of my amputation do not occur to me all at once and I still can’t answer simply when people ask me if I’m glad I did it.

I’m struggling to know what to do with my time now. I got used to being a patient quickly; mind you, I’d had a lot of experience in that area already. I’m still an occasional patient but it’s really not impacting on my life in a significant way. I’ve realised only recently how small my life is. Actually, I think I’ve been aware of the walls closing in for a long while but it matters more now because I have time on my hands that used to be taken up with being a patient and with being scared.

I think I can probably be more than a patient who has disabilities and chronic illness now. I’m tentatively testing the boundaries of what I’m capable of again. I used to do that a lot. It was how I lived my life. I achieved things I didn’t imagine I’d be capable of because I was happy to accept that life is hard and that if there’s a wall I had to find a way over or around it. The thought that I might be able to get back up over that wall again after so long is at once terrifying and exhilarating.

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This post is republished from Chelle Hope's personal blog, To Be Perfectly Honest ...

85

Right to die?

by Martin Sullivan

Reflections on Lecretia Seales ‘Right to die’ interview with Kathryn Ryan, Tuesday, 3 March.

Late last year Andrew Little decided it was time for Labour to return to core business and instructed Iain Lees Galloway to drop Maryanne Street’s End of Life Choices Bill and to develop some policy around zero hours contracts. Since then Lecretia Seales has become the latest public face of the right to die lobby. In her interview on Nine to Noon on Tuesday (3 March), Kathryn Ryan observed how courageous it was for Ms Seales to speak out for those who remained silent on the issue. When Ms Seales (a senior public lawyer with expertise in law and public policy) agreed that, yes, she was speaking for those who couldn’t speak out on the matter, I couldn’t help thinking “This is precisely the problem. It is people like this, with all their ‘expertise’ who will end up speaking for those disabled people who lack the communication skills or cannot speak once euthanasia is legalised.” So, these experts who are so scared of becoming disabled that they firmly believe “better dead than disabled” are those who will get to speak for us when it comes to the end game? What a terrifying prospect!

There were a number of other unquestioned assumptions in the interview that need challenging. To start, there is the assumption that there is a whole host of people out there who are ‘silent’ about their wish to be euthanized if they should get a terminal condition. I have no doubt that there are some, but how many?  Tens? Hundreds? Thousands? Those in the pro-euthanasia/physician assisted suicide camp would have us believe thousands if not millions but this is mere assertion and not evidence based.

During the course of the interview Ms Seales made it clear that when things got too bad she wanted someone there to pull her plug for her. She said that this was something she had discussed with her husband and that while he supported her decision, it would be too close to home and he would not be able to do the pulling. So the solution is to legalise euthanasia and let doctors get on with their job of assisting people to die. Hang on a minute - I thought the Hippocratic oath which all doctors take was about preserving life and doing no harm? And so it seems does the New Zealand Medical Association which has repeatedly issued statements that it opposes euthanasia on all counts, especially physician assisted suicide. But we all know doctors are doing it all the time don’t we? The various pro-euthanasia groups keep telling us so, so it must be right, mustn’t it? Show me the evidence I say.

The other problem with physician assisted suicide is that we will all be implicated in the killing of innocent citizens by virtue of the fact doctors are subsidised by public money. Public money comes from the various taxes, levies, rates and so on we all pay.

Language is important in this debate. Most pro-euthanasia lobbyists don’t like to use ‘euthanasia’ and prefer the cuddlier ‘right to die’, ‘assisted death’ or ‘death with dignity’ euphemisms. It seems that ‘euthanasia’ comes with just too much baggage; baggage such as the Nazi euthanasia program which became our silent holocaust in which over 200,000 of us perished. Of course this will never happen again we are assured; safeguards will be built into the euthanasia laws to stop the slippery slope of involuntary euthanasia. Just like they have in the Netherlands and Belgium? Yeah right.  I will blog about this next time.

The theme ‘better dead than disabled’ was strong throughout the interview especially when it came to talking about losing independence as it so frequently does in interviews like this. This always puzzles me for I cannot see why it is so devastating in the minds of others to need someone to help than, say, get dressed when it is not at all devastating for them to have to rely on someone to fix their TV, or car, or plumbing.  Human society is highly complex and interdependent; we rely so much on others in all manner of ways to survive that isn’t it about time we kicked the ideological habits of able-bodiedness, able-mindedness and independence and got on with living interdependently with each other?  

So I say ‘Amen’ to Andrew Little; working people need Labour to give voice to their struggle for social justice, the end to zero hour contracts, a living wage and dignity in their working lives in exactly the same way that we disabled people need them to give voice to our struggle for adequate support services that enable us to live our lives in dignity. Working people, disabled people, most people just want to live their lives in dignity; how this is to be achieved is what should be debated in the halls of power, not quick and dirty solutions to the economically burdensome.  

Disclosure 

Martin is a founding member of Not Dead Yet Aotearoa, an organisation of disabled people and their allies opposed to the legalisation of euthanasia, assisted suicide and physician assisted suicide. See https://www.facebook.com/pages/Not-Dead-Yet-Aotearoa/894401763957596?sk=likes&ref=page_internal  

16

Some aspects of New Zealand’s disability history ‒ part three

by Hilary Stace

In parts one and two I covered New Zealand’s disability history up to the 1970s. From the 1970s the growing international disability rights movement developed what became known as the ‘social’ model of disability, whereby people have impairments but it is society’s attitudes that disable. For example, when a person who uses a wheelchair requires access to a public building the problem lies not with the person’s paralysis – the impairment – but poor building design that excludes the entry of some citizens.

Disability is thus the negative economic, political and social responses to impairment by a society built by and for non-impaired people and a disabled person is someone with an impairment disabled by society. To identify as a disabled person is therefore to adopt a highly politicised position which requires change to society’s values and structures.

In contrast the ‘individual’ or ‘medical’ model of disability sees impaired individuals as problematic or broken and requiring fixing. Their consequently lowered status can lead to institutionalisation or exclusion from participation in education, employment and other aspects of citizenship.

It is not surprising that the global disability rights movement developed out of the same 1960s ferment which encouraged women, youth, ethnic minorities, gay people and other marginalised groups to fight discrimination and reclaim civil and political rights. For disabled people, particularly those institutionalised and whose markers of identity such as personal clothing and possessions were often removed, it was not easy to organise into a strong advocacy force. But institutions also provided the sites for resistance.

A 1976 manifesto published by the London Union of the Physically Impaired Against Segregation (UPIAS) called for a change of attitude to disability policy.

Disability activism took slightly different paths in the US and the UK. In Britain disability studies developed within sociology departments and theorists adapted concepts such as power and oppression from Marxism. US disability activists tended to prefer an individualised anti-discrimination model in line with its constitution ‒ the 1990 Americans with Disabilities Act legislated for individual rights.

‘Nothing about us without us’ became the international slogan in the fight for nondisabling services and structures.

Disabled people and other disability lobbyists were also busy in New Zealand. Impetus was provided by the United Nations declaring 1981 the International Year of Disabled Persons. Funds raised by a Telethon (footage from NZOnscreen) went towards the establishment of Teletext, subsidised transport services and other services benefitting disabled people.

The formation of the pan disability organisation the Disabled Persons Assembly controlled by and for disabled people soon followed in 1983. Parents with disabled children established their advocacy group Parent to Parent the same year. People First, the consumer group for people with intellectual disability, was brought to NZ under the umbrella of the IHC in 1987 by JB Munro and Robert Martin (it later became independent).

A chapter on disability written by disability activist and later Human Rights Commissioner Robyn Hunt featured in the report of the Royal Commission on Social Policy in the late 1980s.

In a major advocacy victory Section 8 of the 1989 Education Act legislated for the right for all disabled children to attend their local school on the same terms as other children. Before then educational options were few.

However, despite the Royal Commission on Social Policy advocating more support for disabled people, incoming National Party Minister of Finance Ruth Richardson’s 1991 ‘Mother of all budgets’ chopped welfare. ACC provisions were also cut. Minister of Social Welfare, Jenny Shipley and Minister of Health, Simon Upton, promised new disability policy within financial constraints. Support for Independence for People with Disabilities – A New Deal was incorporated in the Health and Disability Services Act 1993. From 1994 most disability support services were transferred from Social Welfare to the Regional Health Authorities and funded by a capped and ring fenced budget from within Vote: Health. The landmark 1975 Disabled Persons’ Community Welfare Act was repealed. That act had acknowledged that the state accepted responsibility for the provision of many disability services and contracted CCS and IHC and other providers to provide the state’s services.

The market was now brought into service provision. A service provider tendered for the service via a contestable, detailed and competitive contracting process. Previously free services were now purchased by ‘clients’ from the state through Regional Health Authorities and service providers. Support was no longer a statutory right but dependent on available budgets, and disability became an individualised health problem. Access was through a new Needs Assessment and Service Coordination process, with strict eligibility criteria comprising only physical, intellectual or sensory (vision, hearing) impairment. The growing numbers diagnosed with Asperger’s Syndrome (autism without intellectual disability) were one group to miss out.

Two policy highlights of the era were the 1992 Mental Health Act which provided new processes including a complaints pathway, and the inclusion of disability in the 1993 Human Rights Act which made it illegal to discriminate on the basis of disability. DPA worked in coalition with gay rights groups to win this human rights struggle for both groups. Stories of abuse in institutions such as Lake Alice continued to filter into the media.

By the mid 1990s the neoliberal market model of disability support was under stress as the capped budget was not enough to provide required services, particularly at a time of high unemployment, market rents for state housing, and compulsory work testing for all beneficiaries. The killing of autistic teenager Casey Albury by her mother in 1997 occurred in this context. Following investigations a picture emerged of fragmented and inadequate services and lack of family support.

Meanwhile the success of the 1989 Education Act meant the state was supporting two systems: increasing numbers of disabled children at regular schools, as well as in numerous segregated environments. Considerable regional variation had also developed. The Government’s response was the controversial 1995 policy of Special Education 2000. Its aim was to promote mainstreaming of children with ‘special educational needs’ in regular schools and to close units and special schools. Unfortunately resourcing to support mainstreaming was highly inadequate. Legend has it that a Treasury official decided that only 1% of children would require targeted assistance, which was implemented through an Ongoing Reviewable Resourcing Scheme via a complex application and faceless verification system. There was widespread opposition to this policy from parents including a group who took the government to court. A review of Special Education 2000 was one of the Labour Party’s 1999 election policies.

1995 Tom Scott Cartoon featuring Minister of Education Lockwood Smith and three children with special needs. Ref: H-242-020 Turnbull Library

The neoliberalism of the 1990s was a difficult time for many disability activists although the rights movement continued to grow. They had instead been building relationships with opposition MPs, such as Labour’s Ruth Dyson. A window of policy opportunity opened with the election of the Labour-Alliance Government in November 1999 and a busy decade would follow. That’s in part four.

10

Review: Where is Autism?

by Russell Brown

When our older son was provisionally diagnosed on the autism spectrum in 1995, there wasn't a lot to know. The diagnosis of Asperger Syndrome itself had only entered the DSM the year before. Most educators hadn't heard of it, the only information online seemed clinical and forbidding, and remarkably, the Special Education staffer who brought the news had walked out of the house without telling us a thing. (In retrospect, it's entirely likely that she didn't have anything to tell us.)

The lifeline came from another parent: the brilliant Barb Kirby, who had founded the O.A.S.I.S website (now OASIS @ MAAP) not long before, when she was faced with a similar lack of information around her own son's diagnosis. It was grounded in the experience of parents like us and it was worth any number of terse, clinical summaries.

Later, access to the experiences of adult autists became very important to me, and remains so. But we've learned a lot as parents and I try and offer support and advice to other autism parents starting out on the journey, via a Facebook group. It's from this tradition that Rowena Monds' Where is Autism? comes. In her own words, this children's book, including its end-notes is "based on the author's own experiences raising a child with autism".

The book is largely aimed at helping others – in particular, a child's carers, teachers and peers – to understand, but it will also connect some dots for new autism parents. I really like the way it doesn't restrict itself to deficits, as you can see in the facing pages 18 and 19. We talk about "special powers" in our house too:

Not everything here will be relevant to every child or every family. Monds' advice on visual thinking and visual aids doesn't particularly tally with our experience, and many autistic children won't have the friendship skills or verbal ability that Kahu displays in the story. But she notes – as anyone writing in this area should – that experiences are highly indvidualised. No two Aspies are the same.

It's not a long book and I think a few too many pages are taken up with the "where is autism?" set-up, but as an engaging, sensitive and localised (a Maori protagonist!) guide for children and adults, it should have a place in every New Zealand primary school library. (We still have school libraries, right?) It is going to help.

Where is Autism? can be ordered directly from Aries Publishing for $25.

Rowena Monds is also the founder of Autism Thinks, which provides information to assist families, professionals and individuals working and living with autism.

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It's worth noting that the Aspie who got that diagnosis all those years ago has also had a look at Where is Autism? and likes it.

Jimmy now has the skills to communicate in his own right of course, and this week Attitude published his short video about autism and Asperger's as part of its Hey There series in which young people talk about their experience with disability. It's really great and I could not be more proud of him.

21

Funded Family Care from a recipient’s perspective

by Withheld

Eighteen months ago I was on a benefit. Shock, horror! Yes, I was on a benefit. I’d been on what is now the Supported Living Payment (SLP) for about 5 years. The washing machine was on its last legs, I’d fixed the oven using spare parts from trademe (just the door which wouldn’t stay closed), every cent had to be spent with care, I couldn’t save and the financial future looked pretty hopeless really.

Why was I in this predicament? Because I’m a mum and one of my adult children is disabled. She needs full time support. This includes what we delicately refer to as “intimate” care, but her brain is perfectly fine and like me and probably you, she isn’t comfortable with people she doesn’t know (and most of those she does know) seeing her undressed, or touching and cleaning parts of her usually considered private. Apart from that, her combination of physical needs is unique, demanding multiple specialised skills, and failure to meet them properly would result in serious emotional and probably health consequences.

It was more than 6 years ago that her needs changed to this degree. She has a progressive disorder that relentlessly removes physical capability a bit at a time. Back then she was hospitalised for a serious unrelated illness and when she recovered from that she needed round-the-clock support. Although she’s bounced back somewhat, she still needs someone with her most of the time. She felt extremely anxious about relying on support workers who might not turn up and would need to be trained to meet her needs. When you don’t have much energy to meet the ordinary demands of living, expending energy training people over and over (because of churn) seriously reduces your quality of life. The thought that you might fall or endure some other misadventure because of a new person not knowing your needs or not listening to you is worrisome. You really don’t need more worries than you already have, believe me!

With the initial health crisis over, we talked about it and decided that the best thing for both of us was that I should be her caregiver. For me it means that I’m no longer worrying about her wellbeing while I’m at work. For her it means she has a reliable person who understands her needs to support her. It has enriched the mother/daughter relationship for us both. The means to achieving this nirvana of care was the Domestic Purposes Benefit (DPB) for caregivers. The main drawback is that benefit levels are so low and given the reason for being on the DPB/SLP, the only way out of the financial trap was death of one or the other of us (or winning lotto - which is tricky when you can’t afford to buy tickets).

Then along came Funded Family Care (FFC). The Atkinson case had been dragging through various courts for years and eventually the Human Rights Review Tribunal made a decision. Some time later the government changed the Health and Disability Act on Budget day with much fanfare about how family members providing significant care would be paid. When the actual legislative changes were made public however, it was clear that the promises were almost empty.

We read the FFC policy, realised we were eligible and after a lengthy and fraught process, I am now paid minimum wage for 40 hours of care per week, although the hours of support my daughter is assessed as needing are about three times that. We’re grateful because we are much better off. My pay through FFC is about twice what my income was on SLP, and the improved finances mean a better life for both of us. Last year we replaced a rotten ramp, changed carpet with underlay for carpet without underlay in the living room (sounds mad but firm surfaces are easier for people with weak arms to move a wheelchair on), bought specialised cushions to increase comfort and reduce the chance of pressure sores, and managed to get involved in community activities on a regular basis because we could now afford the travel costs to get there. One of the issues we had faced was social isolation, so this last is a biggie. Another issue, as you can tell from where the new money went, was disability needs not covered by The System.

Now, as I said,we are grateful for Funded Family Care. Our lives are better as a result of it BUT, it is a long way short of achieving what the Human Rights Review Tribunal decision clearly intended and we are one of the lucky few who can benefit from it.

The limitations are many. The worst is that FFC does not permit partners or spouses to be paid to care for their disabled 'other half', though ACC claimants can do this. Slightly less terrible but still offensive is the fact that family members can only be paid minimum wage but other carers coming in to do the same tasks can be paid much more. There’s also the conundrum that FFC is restricted to disabled people with high and complex needs, which by definition means that they have complex health issues, serious communication difficulties, serious learning or behavioural difficulties, or a combination of these. Yet they are required to accept the responsibility of being an employer. If you read the FFC policy you’ll see there are a lot of conditions including limits on other paid work.

Now FFC is under review. There’s a lot I would change. The existing scheme is a reluctant response to a Court decision, set up to keep the costs of the scheme as low as possible but ignoring cost savings in other areas and thumbing its nose at the judiciary and our civil rights. Supporting family members to care for people with high and complex needs can save years of residential care costs, and be better for all concerned, even the residential facilities, which do not cope well with this particular task - see this 2011 report and this news story.

Perhaps the biggest change I wish for is that our decision makers will put people, fairness and justice at the heart of their choices rather than narrow questionable costings.

Te Reo proverbs express this better than I can:

He taonga rongonui te aroha ki te tangata

Goodwill towards others is a precious treasure

and

I orea te tuatara ka patu ki waho

A problem is solved by continuing to find solutions.