- Date published:
11:55 am, October 24th, 2019 - 23 comments
Categories: death with dignity, disability, Social issues - Tags: End of Life Choice Bill, euthanasia, social theory of disability
Only that didn’t happen. Instead, the New Zealand Parliament is going to let the voting public decide next year if we should have the right to kill ourselves if we are terminally ill.
I’m theoretically in favour of right to die legislation and state support for humane methods. There are compelling reasons for empowering individuals to have choice and agency in how they manage personal suffering. But it’s backwards to have such legislation, or even public debate about it, without first looking at how to give disabled people and the elderly the right to live a good life.
There is the clear issue of the risk to vulnerable people being directly or indirectly coerced into dying early. Further, a society that actively ignores the well-being of disabled people as well as their voices in public discourse is a society that has no moral mandate to claim it can protect vulnerable people when the need arises.
The social theory of disability gives us the model that disability doesn’t arise from health conditions or physical/mental impairment, but instead is created by how society organises and structures itself. Impairment is what happens in our bodies and minds, but disability is constructed with external barriers specific to that impairment. Someone who relies on a wheelchair for mobility becomes disabled when they need to access a building that has stairs but no ramp. Society built that disability into the building when it decided what human functions were important.
As we become aware of this dynamic we then tend to try to remedy it by adding on mitigations. I see this a lot in online discussions about transitioning society from a car culture to a walk/bike/public transport culture. Such discussions are invariably driven by able-bodied people who tack on examples of bikes disabled people can use instead of addressing the poorly designed public space at source. That some disabled people can use certain tech does sweet fuck all for the ones that can’t.
When I look at these spaces I see the full range of abilities that humans have (including the ones invisible to me) and how to design them by centering disabled people rather than trying to add their needs on afterwards.
If you centre disabled people you end up with a design for everyone. Old school, I first learned this from tramping, as a child, later as a fit young person, and in family groups that included elderly people. You put the slowest person at the head of the line. This doesn’t stop fast people from ranging ahead, it means that the whole group looks after everyone as a matter of course.
If the perspectives of disabled people aren’t centred in the euthanasia debate, then the discussion itself is a failure. An election campaign where disabled people will now have to fight to be heard, because of the barriers put in the way by society, is the social theory of disability writ large. This is badly designed process from a society that doesn’t yet understand that valuing all abilities helps us all. I’m already hearing the voices that will be lost in the cacophony of the election campaign, as well as those that won’t even be in the room.
Given how wealthy and resourced we are as a country, we’re actually pretty shit at ensuring well-being for disabled people. We knowingly and intentionally leave people with disabilities to live in long term poverty. There’s a woman I follow on twitter who for a long time couldn’t shower at home because she rented and there was no housing available for her with an accessible shower. I see people in Wellington talking about not being able to go out at night because there is no public transport for people in wheelchairs.
We lock autistic people up in closed rooms at schools or in psych units because we won’t look after them properly, either from ignorance or bloody-mindedness. There’s a case in the news this week of elder abuse and neglect in a rest home and the Health and Disability Commissioner being unable to do much about it. The Ministry of Health has been trying to surreptitiously decrease disability support funding. They cut homehelp to elderly people some years ago, under National but I don’t think Labour have reinstated it.
Those examples are off the top of my head, without having to think too hard about it because the stories are legion. It’s politically one of the most difficult issues we face because even on the left, where we are supposed hold the moral high ground on well-being, we are still not getting it.
Rather than pushing on with euthanasia legislation, and rather than resiling from the need to confront how to die well, a step in the right direction would be a national conversation about what well-being is for disabled people, a conversation that centres those people and lets them lead the way.