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A Perfect World (A Father's Quest to Unriddle the Mysteries of Autism) by David Cohen

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David Cohen's remarkable book is both a journey and a story of home. After his three year-old son Eliot is diagnosed with autism, he travels the world to meet leading autism researchers, educators and clinicians. But the heart of the book is his moving meditation on family and what really makes a good life.

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“My life when I leave school”: Transformative research for school transitions

Caroline Quick and Andrew Dever are two articulate young adults, who, like many other emerging researchers, are seeking research funding for their work. They have recently left Allenvale Special School in Christchurch and Caroline is currently attending a two year life skills course at CPIT and Andrew is at Skillwise.  They are now conducting their own participatory focus group research project, assisted by their colleague Colin Gladstone from Allenvale School, who is also studying at Canterbury University.  

Together they have formed a research team to look at how young people with intellectual impairment like them can have more control over the transition process and resolve barriers many face in going on to work or independent living.  The statistics reveal that, compared to people without intellectual disability, people with an intellectual disability are more likely to be unemployed, have fewer qualifications, have fewer friends and live at home or with caregivers.  And there is a big gap between government policy and what actually happens.

So what can be done to address this? Their research questions include asking how young people can have more choice and control over their lives in this transition from school to post school lives.  Their focus groups include those with answers: young disabled people both at school and school leavers, famlies, educators and employers.

They have been jointly involved in research design. I asked what themes are emerging from their research as to what young disabled people want? After carefully explaining to me that there are ethical and confidential issues around their research which means they can not tell me what individual people might have said, they can reveal that some of the things the young people want are real jobs which pay proper wages, friends, to go flatting, to get married and have a family (ie the same things non-disabled young people want).  The researchers want to be valued for who they are and what they do and this, of course, includes wanting to have their research valued, to make a difference and to be paid, professional researchers. Colin is applying for funding so this can happen.

These two young people are impressive presenters on their topic and I’m sure are very skilled and polite facilitators of the focus groups.

When those with insider knowledge and lived experience conduct research it is very powerful.

Best wishes to them all.

(This was one of several papers presented at the New Zealand branch of ASID (the Association for the Study of Intellectual Disability) in Hamilton 26-27 August on how people with intellectual impairment can be central to the research process.)

Posted in Advocacy, New Zealand, Policy, Schooling, Stories, Uncategorized by Hilary Stace on Monday, September 7th, 2009 at 4:59 pm. Follow responses to this entry through the RSS 2.0 feed. Leave a response, or trackback from your own site.

2 responses to ““My life when I leave school”: Transformative research for school transitions”

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    Martin wrote on September 9th, 2009 at 10:13 am:

    This sounds an interesting piece of research Hilary. I especially like Andrew & Caroline’s roles as co-researchers. This subverts stereotypical assumptions about intellectual disability and intellectually disabled people/people with learning difficulties/people with learning disabilities

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    Marguerita Hickinbotham wrote on July 3rd, 2011 at 5:02 am:

    This really is a wonderful article. Thanks for making the effort to explain all of this out for folks. It really is a great guide!

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