Monday, August 10, 2015

Becoming a Person

Don't assume that because we have an intellectual disability we do not know what you think about us.

(Robert Martin)

The story of the closure of institutions for mentally ill and disabled people is one whose last chapter, in many countries, has yet to be written. Even where such institutions no longer exist, the next necessary step – that is to say, the meaningful inclusion of the previously segregated – is far from achieved. Society continues to disable, as well as to both define and produce abnormality and madness.

Robert Martin experienced both worlds, the old and the not-yet-new. Having suffered brain damage at birth following a forceps extraction, the Whanganui-born Martin spent the first fifteen years of his life in the care of various institutions, and the following four decades fighting for inclusion and the right to self-determination of people with disabilities. His contribution to self-advocacy in New Zealand and overseas has been extraordinary, and is now the subject of a biography by author and documentary film-maker John McRae.

Before the extraordinary, there was the ordinary, meaning protracted imprisonment and abuse: this was the common experience for disabled children in a country that, McRae tells us, placed them in facilities for the ‘mentally impaired’ at four times the rate of the United States or the UK. In what is a recurring motif of the book and his advocacy, Martin doesn’t place the blame for the treatment he suffered on individuals, including his parents.
I don't blame Mum. I don't blame the family. I was a victim of circumstance. That's the way I see it. Even the Kimberley stuff- I don't blame the staff. I blame society and how it was then.
‘Kimberley’ is a reference to the Levin Farm and Mental Deficiency Colony, later renamed the Kimberley Centre, the first institution to which Martin was sent, aged eighteen months, as well as the last in the country to be closed, in 2006 – a historic outcome to which he contributed. The arc between Kimberley opening its doors to Martin and closing them to everyone mirrors the trajectory of the book and of his ‘becoming a person’: that is to say, going from passive object of (alternatively) care, neglect and mistreatment, to full human being, with passions, aspirations and the capacity to both partake of society and contribute to transforming it.

This is, manifestly, the story of a struggle, and Becoming a Person deserves a place among the biographies of New Zealand’s pre-eminent political figures. From the strike at Sunnyvale Farm in 1981, through his leadership role in the seminal self-advocacy organizations Whanganui Client Committee and People First, to his important contribution to shaping the United Nations Convention on the Rights of Persons with Disabilities, Martin must rank among our most successful organisers and campaigners. That he had to overcome a set of extraordinarily challenging circumstances to do so should rightly impress us but hides a more important lesson, which both McRae and Martin are careful to articulate.

Thus of Alison Campbell, a social worker instrumental to the activities of the Client Committee, Martin says:
She knew that we couldn't be handed the power over our lives. We had to seize it for ourselves. You cannot give power. You can try, but the power always remains with the person who is giving it. Alison showed us how to take it for ourselves.
Equally, we are reminded time and again of Martin’s own concern for those less outspoken and capable of self-advocacy than himself, and of the work he did to expand the organizations and train more people to take on active roles. In his work to change the culture at the IHC, he might say:
This is all for people who can talk and who can discuss things. What about those who can't get involved and don't talk? What are we going to do about them?
While speaking in New York at one of the meetings that led to the drafting of the Convention on the Rights of Persons with Disabilities, he said:
This Convention can't just be about those of us here today. It has to be meaningful for the people who aren't in the room; to my friends who aren't always seen or heard by others because they don't communicate in the same way as us here. It has to protect their rights and speak about their lives.

This widening of the perspective includes viewing disabled people as part of their families, and the families as part of their communities and the wider society – perhaps to restore the fabric of care and belonging that was denied to him. There is a passage that describes very plainly and eloquently our own experience:
Robert talks about how families struggle to manage when their child has an intellectual disability; how meeting the child's needs can become the entire focus for the family. Life becomes a battle to find quality services, to access the extra funding that the child requires, to find the right pre-school, primary and secondary schooling. He explains how families very often become isolated. ‘They become disabled families.’
You could take that idea, the notion of a disabled family, and expand it to include the whole of society, as a way of making visible both disability and struggle – as McRae’s book does most admirably.

Ultimately inclusion, seen through the radical work of Martin and his contemporaries, becomes an always unfinished project, an impossible demand that must nonetheless be advanced: because settling for anything less would mean denying people like Robert Martin their personhood.

John McRae. Becoming a Person: The Biograhy of Robert Martin. Nelson: Craig Potton Publishing, 2014.

With thanks to Beck Eleven, who also reviewed the book.

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