Access by Various artists

6

Legless

by Chelle Hope

Tomorrow I’m seeing the orthopaedic surgeon who amputated my right leg in October 2014. I saw him once after I was discharged but this is the first time I’ll see him now that I’m properly ‘healed’.

It took a while to come to terms with my decision to amputate and longer still to accept it once it was done and there was no turning back. I think I was in shock for a considerable time and it took a lot longer than I anticipated to recover, physically and psychologically.

Now that I have recovered for the most part, I have fully integrated my “stump” into my body image, which has always been quite healthy considering I have spina bifida. I can look in the mirror without thinking about what I looked like before. I no longer try and put a sock on a leg that isn’t there and it’s been a long time since I’ve grabbed at thin air, which happened daily for ages. That was pretty upsetting. Actually, I cried like a baby the first time that happened.

To begin with, I didn’t want to go outside or to see people because I was overcome with the idea that people might stare. That was such a foreign feeling. It was so difficult for me to comprehend, even at the time, that I might feel so self conscious. After all, I have always used a wheelchair to get around and people have always stared.

Eventually, I did start going outside more and people did stare, as they always had. It’s just that now I was noticing. I felt so exposed and raw in those first few months back home. Even that passed. I’ve gone back to not paying so much attention to people’s lingering gazes.

The whole process has been really a surprise from start to finish. I was amazed at how many different extremely strong pain killers I needed to be on considering I didn’t expect to feel anything much but feel it I did. When the drugs started to wear off and I was due for more, I felt like death. Pain management has come such a long way though compared to 20 years previous, the time of my last major orthopaedic (spinal) surgeries. For that I am eternally grateful.

So, with all of that behind me, I’ll be discussing with my surgeon the unfortunate fact that I’ve started having problems with the other leg now. I’m not sure that I’m ready yet for round two but at least if I have to make the same decision again I know now what to expect.

Chelle Hope blogs about stuff at To be perfectly honest ...

6

Robert Martin: The advocate without limits

by Hilary Stace

Congratulations to New Zealander Robert Martin from Wanganui who has just been elected to an important United Nations position. He is now a member of the Committee on the Rights of Persons with Disabilities and the first person in the world with an intellectual/learning disability on that body. The Committee, which monitors how countries implement the United Nations Convention on the Rights of Persons with Disabilities CRPD, is made up of 18 disability experts from around the world. New Zealand ratified that Convention in 2008.

The election took place during the current Conference of States Parties to the CRPD, an annual meeting for representatives from governments and civil society from countries which are signatories to the CRPD.

Robert was the New Zealand government's nominee for the whole region and the campaign goes back to the days when Tariana Turia was Minister for Disability Issues. His bid has been strongly supported by the Disability Rights Commissioner Paul Gibson and People First New Zealand, the self-advocacy group which Robert helped found in the 1980s.

There is something very wise and calm about Robert. He is also a very generous person. This can be hard to understand when you hear his backstory. As a baby in the late 1950s he was removed from his family and raised in various institutions and foster homes. Life was harsh and abuse frequent. But, as he says, at least he could walk, talk and fight back, unlike some of the others. When Robert reached 15, the State tossed the angry teenager out of care. He had been denied not only human rights, but culture and identity. He often relates how as an institutionalised child he never heard of the All Blacks.

As a young man in the late 1970s he lived under the auspices of the NZ Society for the Intellectually Handicapped (which later became the IHC) where he led what is likely to have been the first ever strike by people with intellectual disability. They wanted to be treated as adults, make their own decisions, and be paid for their work. This activism became the basis of the People First self-advocacy movement in New Zealand. Robert’s leadership potential was noticed and nurtured by the head of the IHC JB Munro and others, and he became a local and international self-advocate.

He spoke at the United Nations during the drafting of the United Nations Convention on the Rights of Persons with Disabilities as a representative of the NGO, Inclusion International. He was made a Member of the New Zealand Order of Merit and became the first inductee into the Attitude Hall of Fame. His 2014 biography by John McRae, Becoming a Person, has recently been translated into Japanese.

Robert and Cindy Johns from People First have been in New York for the last couple of weeks doing last minute campaigning. From there he has been following the story of Ashley Peacock, a victim of modern institutionalisation. Robert’s new achievement seems to have been, not surprisingly, widely supported. It is sad that we haven’t heard much about it in the media. Attitude TV have sent a tiny team of two to cover the election.

Robert was a keen sportsman and remains a dedicated follower of sports. So it would be great if the ‘stadium of four million’ which Helen Clark hoped would support her UN nomination, congratulated Robert on this latest achievement.

89

Fighting seclusion with collective activism

by Hilary Stace

Several years ago I was contacted by a man seeking help for his autistic son. As a researcher on autism I regularly get questions on the topic. But this story was shocking.

Their adult son Ashley was locked up in a unit on the old Porirua Hospital site, and the stress and anxiety of the incarceration was causing deteriorating mental health. The parents were living in Gisborne and travelling down as often as they could, but they needed to get him out of there and into quieter and more appropriate accommodation in their local community.

Could I suggest anything to help the gentle Peacock family? I have a middle class pākehā background that has given me an expectation that systems can be made to work. Something was broken that we could surely fix. Was it a referral to a better psychiatrist, an advocate at the DHB, or even a drama therapist for Ashley’s PTSD? Local disability organisations to provide ongoing support? I thought of the Peacock family over the years and hoped things had improved.

Meanwhile I was learning about wicked problems. Here was a classic example. Man locked up in an inappropriate facility at vast expense to the State. But how to get him out? The going in was easy, probably a mere signature by someone senior somewhere in the past at a time of crisis. Over the years there have been various diagnosticians with labels for the ‘illness’ they have identified from their training background. Numerous funding streams depend on those labels with most traced back to the Ministry of Health. But is this mental health or disability, as they don’t overlap? Policy in this area is extremely complicated and full of changing acronyms.

Psychiatrists alarmed by autism meltdowns assume he is dangerous. But why should we surprised that a sensitive autistic man who enjoys the outdoors has meltdowns when returned to a cell where there is nothing to do or see for hours and days and months on end? When the assumption is that the visit to the outdoors with his parents caused the ‘overstimulation’ the answer is therefore to the stop the outings?

Then in 2013 there was a picture of Ashley on the front page of the Dominion Post. Ashley was still locked up in seclusion with only a short daily outing into a fenced area. How come he was still there? I asked around and almost every disability organisation and many agencies knew about his story. Dave and Marlena were tireless advocates for their son.

Surely this DomPost publicity would help. But no. Many had, like me, tried to do something and had spectacularly failed. Even the intervention of the Disability Rights Commissioner hadn’t made a difference, although the Human Rights Commission and the Ombudsman both admitted this setting was not the right place for Ashley. New Zealand has ratified the United Nations Convention on the Rights of Persons with Disabilities but without the signing of the Optional Protocol individuals cannot take cases to the UN.

Until recently, there has been no real mechanism to get all those powerful people together to share and stretch the pots of money. We now have a national committee and senior officials and clinicians can meet at huge expense. Parents, even as official welfare guardians, have no power against such gatekeeping authority, and are often regarded as part of the problem.

Then last year Attitude TV screened an excellent documentary on Ashley’s seclusion in their 8.30 am Sunday slot. But only the disability community was watching and although viewers were shocked and horrified at such a blatant abuse of human rights and human care, we are not very powerful.

Then, earlier this year, a mother of a young autistic child who had seen the documentary decided to do something. She called a meeting with Ashley’s parents and advocates. I invited myself along. We called in people with specific skills. So we had a loose collective with the aim to free Ashley.

There had been some progress in the background including a change of clinicians. A trained team of care workers was ready to support him in his community house. (Although funding such a residence was a major stumbling block). Ashley needed urgent dental treatment for abscessed teeth but the ongoing risk aversion, which was at the root of the whole situation, meant it had been delayed for years. Autistic children and adults all over New Zealand get dental treatment under general anaesthetic, so why not him? In May he had several teeth removed and was reportedly much happier for the ending of such long term pain. Unfortunately, the State does not provide new teeth to replace those it allowed to rot.

We needed sit-up-and-take-notice publicity to get things moving. Something effective and powerful in the mainstream media that would force change. A journalist who had won an award for the exposure of disability abuse, and who was known to many of use for her investigations into ‘special’ education, was an obvious choice. Kirsty Johnston eventually got the go ahead from the Herald to work on the story, and she came to Wellington and sorted through the papers and complexity. She met the gentle man who liked the outdoors and horses and made delicate trout fishing flies. But, like his parents, she was not allowed to see the room where he lived.

On the morning of Tuesday 8 June two  stories went out with the Herald. By 7 am there were almost 300 Facebook shares, and the Facebook Page A Life for Ashley was buzzing. Various members of our group braved the broadcast media. By early afternoon both the Green and Labour Parties were calling for action. The Associate Minister was soon on the radio news saying it was complex but not a funding issue, and with a hint of blame said the parents (as if they had power) were working with the DHB to resolve the situation.

For anyone who spends any time in the world of autism policy, people and families, it is no surprise that services are often unprepared, inadequate or even non-existent for some people on the spectrum, particularly those who require a nuanced, complex, inter-agency response. Awareness of autism is generally low, although there are some helpful people who get frustrated when they can’t, for various reasons, provide the service required. So for families and parents commitment needs to be lifelong.

Only a generation ago many of our adults, and children, would be fully institutionalised, heavily medicated and largely invisible to the rest of us. Janet Frame’s novels and autobiographies provide glimpses of these constrained lives. The Porirua Mental Hospital itself ‒ and fortunately a ward has been preserved as a museum – harks back to days not so long ago when hundreds of residents lived in dormitories on this hillside forming their own community, beholden to the all-powerful clinicians and their latest treatments. This museum ward is now only a few hundred metres from where Ashley spends his days and next to the chapel he is now allowed to visit.

So what happens now? We must keep the pressure up for Ashley, his family, and now the other cases of disabled people in seclusion which Kirsty’s latest article has revealed.

Perhaps there are some lessons from this story. Wicked problems can (eventually, hopefully) be solved or at least subverted by astute collective activism. We shouldn’t accept injustice to humans. If something feels wrong keep at it. Fresh attempts are worth trying. Parents and families don’t give up. 

59

The Universal Basic Income and its implications for citizenship

by Hilary Stace

The suggestion about a possible Universal Basic Income (UBI) was only one of numerous suggestions to come out of Labour’s Future of Work initiative. This a wide-ranging policy discussion that the Party’s economic development spokesman, Wellington Central MP Grant Robertson, has been leading for the last year or so. But the idea of a UBI dominated reporting of the Future of Work conference in March.

This is not a new idea, even in New Zealand. For example, Gareth Morgan and Sue Bradford both promoted the idea, from the right and the left respectively, in response to the Welfare Working Group (WWG) in 2010. They agreed that it was a simpler and fairer way to distribute money to those at the bottom. However the WWG report in 2011 led instead to the streamlined benefit system we have today with an increasingly punitive system for our poorest citizens, who include many disabled people.

However, once you get to 65 your status changes, your basic benefit entitlement increases and there is universality of National Superannuation for all the over-65s. National Super cannot be considered a UBI because it is not universal cross the whole citizenry, but it shows that a government could implement a UBI if it was so inclined.

Following the Labour Party’s Future of Work March conference, discussion was lively on social and mainstream media about a UBI. A suggestion of $200 a week had been made as a possible starting point. Some of those on benefits immediately dismissed the idea and said it wouldn’t be enough to live on. A figure of $200 a week or about $11,000 is currently less (although not that much less) than many welfare benefits. But those critics missed the point. The UBI is about universality. A system needs to start with universality of an amount, however small, for every person, including children, and then some universal and fair system tops that up according to need, if required.

Professor Guy Standing who had led the discussion on the UBI at the Future of Work conference, later spoke in Wellington about the concept. He is Professor of Development Studies at the University of London, and a founder and co-president of the international NGO Basic Income Earth Network. Formerly with the International Labour Organisation, he is mainly known for coining the term ‘the Precariat’ to describe the modern situation of widespread insecure low paid work.

At the Wellington meeting organised by the New Zealand Fabian Society, Professor Standing talked about trials of UBIs in various countries, with some even set up as Randomised Control Trials, the scientific positivist ‘gold standard’. He described a pilot in India funded by UNICEF whereby everyone, of all ages, living there at a certain point in time, got the same token regular amount of money. Even with a small amount, people soon started to act communally, putting aside some of their UBI towards community facilities. This illustrates that social benefits multiply from an UBI, whereas capitalism tends to divide.

He advocated that a UBI should start small, be piloted and brought in incrementally. It can be paid by taxing capital, currently undertaxed in most countries, and he was shocked to learn that New Zealand has no death duties. He says we tend to give subsidies to those who are the better off in society. ‘Working for Families’ is a subsidy from which the poorest are excluded. Another example could be the accommodation supplement which beneficiaries have to apply for but which goes straight to landlords.

He also used the term ‘plundering the commons’ to explain the privatisation of assets built up by citizens or of natural resources. Such privatisation denies an income stream for the citizens, and also leaves them to clean up any mess (even literally such as pollution) while private interests profit. The privatisation of our electricity resources and the export of our water are two obvious examples. Norway kept state control of its oil industry and now both the citizens and society are wealthy. So if we taxed the bottled water industry, at say, $1 a litre we could well afford a generous UBI.

So regarding disability. How could a UBI work in New Zealand?

I will use my son’s case as an example. He is currently a beneficiary, although, like his peers, he would love a proper job. This year we are on our fourth lot of paperwork since January to prove how much he earned last year in interest and in a job he finished in 2014 (so there was only a small residual payment in 2015).

His annual review for Work and Income works on an approximate calendar year but financial and other organisations work on a financial year. So I, as his agent, went through bank statements and pay slips to translate the information into the calendar year data they required.

That was not good enough. My assessment was not trusted and I was asked to provide the information on an official form, which the bank would charge to produce. I ended up providing lots of printouts and photocopies and at the time of writing it remains unresolved. All this will, eventually, make a difference of about $5 a week to him. This system thrives on distrust, is cumbersome, punitive and bureaucratic.

If we had a UBI he would get the first, say, $200 no questions asked as his right as a citizen, the same as every other New Zealander, regardless of age, would get. He currently gets about $60 more than that a week, and other beneficiaries get more in various supplements which currently involve a large amount of time and paperwork. But he has friends who cannot afford the public transport fare or who have insufficient support or resources to even start providing the paperwork. Poverty and hopelessness are the only constant for many beneficiaries and disabled people.

The next issue is how to create a simple system to assess need above what is provided by this theoretical UBI - a system that is not means-tested or ring-fenced, and would work for everyone whatever their circumstances. It would need to be one simple person-centred needs-based system, based on respect, justice and trust. There would no longer be divisions in disability support between ACC and MoH. But our current disability support Needs Assessment Service Coordination model is not the right one as it is ring fenced with strict eligibility requirements.

Instead we need a system that asks people what they need to participate in and contribute to the community if they do not have paid work to top up their UBI. We could also, for example, believe parents and schools when they say that certain children need extra learning support.

With taxes on housing and land, property speculation would no longer be lucrative, and the power of the state could then provide housing security through social housing (with Universal Design of course), income related rents and other policies, so many people might not need much of a top up to their UBI.

Those who say a UBI can’t be done or is too expensive should look at history when earlier New Zealand governments managed such great jumps forward. In 1938 the first Labour government brought in the ‘cradle to grave’ welfare state, financed by a fair tax system. It included disability pensions in a limited form and an accessible public health system. A Family Benefit for children paid to mothers was another form of universal financial support. In the early 1970s we got ACC with its principle of no fault compensation for accident and in 1975 the Disabled Persons Community Welfare Act (thank you JB Munro) brought in support for those whose impairment was not caused by accident.

With political and public will we could create a UBI plus a simple, trust based person-centred top-up system. It could be funded by a fairer tax system and investment in our income earning public assets. Savings on a number of fronts could be made. A UBI would replace the expensive to run, bureaucratic and demeaning benefit system. Much of the detail such as a fair needs assessment system could be developed by public discussion in partnership with the best public servant minds. Just imagine the enthusiasm and expertise disabled people and beneficiaries could bring to that project!

Most importantly, a UBI would value all the citizens and their contributions including all that voluntary work my son and other beneficiaries do, such as helping with community activities, pet feeding, or even giving blood. Every human would be equally valued.

48

The Meltdown

by Russell Brown

As you might expect, I don't closely follow the singing career of Susan Boyle, so I'm a little late to the news that last month she suffered two traumatic incidents, at Derry and Heathrow airports respectively. 

My immediate thought was of her revelation in 2013 that she had been diagnosed with Asperger Syndrome. As is very frequently the case with people who are diagnosed as mature adults, the news came as a huge relief to her. Among other things, she learned that her childhood diagnosis of brain damage was incorrect. Her IQ was above average.

But that does not mean she doesn't need support. What happen to her last month sounds like a classic autistic meltdown – or, rather, two of them. It seems the earlier incident, in Derry, was triggered by the unexpected departure of her brother on an earlier flight. That meant two things: she didn't have her usual support person, and the plan had changed without warning.

I have been thinking about travel-related anxiety lately, because our older son, at his own behest, did his first independent travel recently. It was only to Wellington, and only after a test-run with me in January, but it did bring home to me how much potential there is for confusion and anxiety in air travel.

Further, he stayed with good friends in the capital, who reported his anxiety at not having, and keeping to, specific times and plans when they went out. We're all so evolved to each other at home that this is something we almost never see. So that was a reminder too.

I sensed a little of what it might be like on my first day in Brooklyn, New York, recently. I didn't know Brooklyn at all – which way was even up? – and it seemed like a series of small things, from the foreigness of the money and the voices to the Metrocard ticket machine inexplicably rejecting my Visa card, built into a feeling of anxiety that lasted perhaps half an hour.

But, of course, I was fine. And when, at the other end of the trip, I inflicted the ultimate unplanned change on myself – by being a great big dumbarse and getting my flight time wrong – I dealt with the problem wearily and methodically, even when things started to go yet more poorly. I'm lucky.

Our son is a far more frequent and accomplished user of public transport than I am, but when he first started, there was one evening when he accidentally shortpaid his bus fare and the driver told him he'd have to get off at the end of K Road. Big change of plan. From what I understand, our son got confused and anxious, then simply locked up. Not all meltdowns are kicking and screaming – sometimes they're more like self-shutdowns. I presume all this happened in front of other passngers.

I've always been grateful to the unnamed bus driver who realised there was something more going on than a shortpaid fare, and told our son to sit down and he'd take him where he needed to go. Part of the reason I'm writing this is that it might help other people recognise a meltdown and do the right thing if they do.

This checklist of what not to do is a good start. Our family experience has trained us towards declarative, rather than interrogative, language – don't pepper someone with questions to add to the processing overload. It's better to put a proposition: "If you're having a meltdown, we could go somewhere quiet." Don't raise your voice, obviously. There's no "snap out of it" fix, but reducing noise and stress will help. For that matter, helping will help, like the bus driver did.

Or ... as someone who works with core autistic people noted to me, it might be that attempts to help might simply add to the noise and be really unhelpful. I didn't say this was easy.

And I don't have all the answers here, so I'm interested in hearing from adult ASD people on their experiences and what has helped them. Given that almost all the information online about meltdowns relates to children, I think this would be useful.

Oh, and also, Susan got on her plane just fine the day after her bad experience at Heathrow. Good for her.