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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. 

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