You see, I have always sung from the song sheet of the Social Model of Disability. Like a lot of other disabled leaders in NZ, I have endorsed the social model with an evangelical fervour.
Firstly, it's a great way to explain to non-disabled people the way their actions, attitudes and the environments they create can either be disabling or non-disabling to a person with impairments.
And secondly — and more pointedly, if I am honest, the social model is far more palatable to me than the black and white medical model which calls a spade a spade.
Let me try to unravel this. The medical model will look at the diagnosis of an individual, articulate it, and then prescribe an intervention if one is available.
The social model of disability purports that individuals aren't disabled. They may have an impairment or two, but it is the people around them, their environment, their community or the society they live in that disable them. It frames disability as a social construct. Barry then unleashed a statement which snapped me out of my social modelling.
He told us: "The only way children learn is if they are engaged in a learning environment, not socialised but engaged."
He didn't want a young person with disabilities leaving school with the "I have been included" T-shirt. He wanted them in a T-shirt that read "I have been educated".
This resonated with me big time. As part of an expert panel, I have presided over development and implementation of the new NZ Disability Strategy. In this role, I felt that every time I put forward the need for disabled children to have access to specialised services as well as the right to attend local mainstream schools, I was treated like a barbaric heretic from the Stone Age, promoting 'segregated' institutions from the past.
When, however, I processed Barry's mantra — "children learn when they are engaged" — I automatically thought of a young local boy with cerebral palsy. He is charming, witty and handsome (reminds me of me), and attends a local school. He is having a whale of a time socialising at school and he is, by all accounts, very popular.
When it comes to being able to write, however, he can't.
I have been advocating for his assistive communication technology to be sorted out for over a year. All I see are civil servants wringing their hands but not coming up with a solution. Thank God Stephen Hawking wasn't relying on this lot for assistive technology.
Barry then went on to discuss the neurology of children with foetal alcohol syndrome, children who have had mothers on P (P babies) and premature babies. He talked about how their brains are "wired differently".
He showed photos and MRIs of their brains. He talked about how they learn differently. He talked with gusto about the importance of a "proper diagnosis".
And I had epiphany. Yes, I have had a diagnosis: cerebral palsy, full-stop, haere rā, see you later. I have had brain damage at birth. But where is my photo of my brain? Where is my MRI? What's my preferred way of learning? Does my right hemisphere talk to my left?
I left the presentation with a newfound respect for the medical model. I realised that disability, in its diversity, needs to be treated as such.
I left with a realisation that the social model has been industrialised by people with agendas. While economically helpful to dumb down diagnosis and difference — and tar everyone with the same inclusive 'we're all the same here, folks' brush — it is not an attitude that captures the sophistication of the age of personalisation. Cheers, Bazza, it's always good to see things in A Different Light.
■ Jonny Wilkinson is the CEO of Tiaho Trust — Disability A Matter of Perception, a Whangarei-based advocacy organisation.
