OPINION:
Our son Travers is 43 years old. He has Down syndrome and is a cherished member of our family. For his whole life we have had to fight for everything he has achieved. We’ve fought for his right to attend his local primary and secondary schools, to get extra physiotherapy, to go to tertiary education, for his flat. We’ve had to explain why he needed particular support, again, and again and again. We are survivors of an, at times, indifferent education and political system. We are intensely proud of Travers and the life he now leads, flatting with his mates near his brother and one sister, only a pyjama ride away from us. I say pyjama ride – because just because he is an adult, we are still watchful, still prepared to leap into action to support him, whatever it takes, whenever he needs us.
You can never rest being the parent of a disabled person, because with each gain we made, we were made to pay. You see, we are expected to be grateful. Be grateful for every drop of support, be grateful for every medical intervention, be grateful for the school principal who enrolled him, be grateful for the politician who understands your needs. The word “gratitude” sticks in my craw. It goes back to the charity model of the poor receiving charity from their betters. It smacks of others telling you how to run your life with the small parcels of support awarded to you. The crumbs under the table. My beautiful son is not seen as “contributing” to this society. He is not seen as an economic unit – so he really doesn’t matter.
This truth was brought home to us with a resounding crash on Monday, March 18, ironically the same week as World Down Syndrome Day. Whaikaha – the Ministry of Disabled People – so hard fought-for by the disability community – announced on its Facebook page the changes to how disability support funding can be used. Never before have I seen the outpouring of grief and bewilderment at a ministry announcement. Without any consultation, people’s lives and how they survive them, have been overturned. There is confusion, trauma, and disbelief in the disability world, that this could be happening. But it is. Apparently, the funding is on “pause”, however you interpret that word.