Jonny Wilkinson is the CEO of Tiaho Trust - Disability A Matter of Perception, a Whangarei-based advocacy organisation.
I regularly feel culturally challenged.
Sometimes I don't like a culture which presents itself. Sometimes I feel a culture isn't presented or represented enough. Sometimes it's the culture in the bottom of my coffee cup left on my office desk over the weekend.
Last week I was a judge at a talent show run by the LYNKZ programme, a Northable quality day programme for people with disabilities and impairments. I have been a judge at this annual event for a number of years. I am always humbled by the passionate supportive culture on display at these events. It's something very hard to articulate. One needs to be there to see this different, relatively new phenomenon of disability culture.
There are many types of disability culture; in fact, it's as broad and diverse as disability itself.
There is, however, one common theme: "An acceptance of human differences, an acceptance of human vulnerability and interdependence, a tolerance for a lack of resolution of the unpredictable in life, and a sense of humour to laugh at the oppressor or situation, however dire it may be" (Carol Gill).
I'm on an expert panel presiding over a review of the 15-year-old NZ Disability Strategy. We have produced a new strategy for the next 15 years and are now feeding into a framework about how the strategy will be implemented, monitored and measured. Most people on this panel have impairments of one kind or another. We do share a certain culture.
However, there is an almost evangelical bias towards inclusionism at all costs, particularly in the educational and vocational areas.
When I try to challenge the group about the importance of providing a range of options for a diverse range of needs, the push-back is fierce. I try to balance statements such as "every child has the right to attend their local school" with an additional option such as "and access to specialist school services, should they choose".
These suggestions turn calm faces into expressions of profound nausea and retorts of: "If you give mainstream schools the hint of an excuse, they will exclude disabled children wherever they can."
Now, I know that things in the past haven't been that great as far as mainstreaming disabled children in schools. Yes, there needs to be better resourcing to achieve this. And yes, I need to add a disclaimer here, as my goodly wife is the principal of our only Special School in Tai Tokerau, and being a part of the life of this kura has certainly helped shape my thoughts, keeping my feet firmly on the ground and reminding me of the side of the disability spectrum of high complex needs.
After attending the Lynkz Factor, I am even more resolved that blanket mainstreaming will not suit everyone.
In fact, if we, as an able-bodied dominated society, insist on one ideology for everyone, aren't we disallowing the right of certain communities to be part of subcultures?
How would Deaf people maintain their Deaf culture and keep New Zealand Sign Language alive with blanket rule of mainstreaming?
If support was discontinued for programmes such as LYNKZ, would this result in isolation?
The right to culture, to community, is a real necessity for these young people so they can sustain their wellbeing throughout - and most especially - beyond school. The culture of disability I see every year at LYNKZ factor is an enviable network of peers and friends singing, dancing, laughing, supporting one another and generally having the best of times.
Who says neurotypical is so great?
As I ponder the values of different cultures in different contexts, my mind wanders forward to the Melbourne Cup. An old line is as true today as ever: let people have choice because it's different horses for different courses. It's all about diversity and self-determination ... isn't it?