On ignorance and the belief that disability is worse than death

In recent years, the discussion around assisted suicide has exploded in the United States, and it feels like every other week, I’m reading a story about how disability is worse than death, and some poor suffering soul wants to die rather than continue living with disability. It might be congenital, it might be acquired, it might be progressive, it might not be: These stories unquestioningly present disability as the worst thing ever, reiterating the common meme that disability is torment.

At the same time, some peculiar and troubling memes around abortion for disability are arising: Namely, the notion that of course an expecting parent would abort a foetus with a diagnosis, because who would want to have a disabled child? Talking about abortion in this framework is tricky, because it’s easy to feed into the notion that disabled people are opposed to abortion, or that some abortions are worse than others, and I’m not here for that, just as I’m not here for disability abortion bans or laws forcing people who want to get abortions to sit through information about ‘perinatal hospice.’

But the fact is that socially, many people believe disability is worse than death. That feeds into a fear and hatred of disability and it interacts heavily with disablism — it is disablist, after all, to say that a life with disability is inherently not worth living. While nondisabled people go to weepies about assisted suicide and celebrate books about killing disabled people and refuse to hold parents of disabled children accountable when they murder them, we hear loud and clear that disabled people are less-than, with lives that inherently don’t hold value because of inherent traits of our bodies and very beings. Disability=gross. Got it.

Here’s the thing, though, and I realise this sounds paradoxical: I think that malice isn’t actually the driving force between these horrific attitudes and their consequences. Ignorance is. And that’s actually a good thing, because in theory it means that we can combat them, if people are willing to have a conversation (hahaha, like that ever happens). If we can show nondisabled people that disabled lives aren’t inherently valueless, that we do actually have a place in society, we can take a positive step towards full inclusion, and not just inclusion in the sense of grudging tolerance, but inclusion in the sense of unquestioned belonging.

The way to do this isn’t through exceptionalism — it’s not through goggling at Paralympic athletes or Stephen Hawking, or reading ‘inspirational’ stories about people doing things ‘in spite of’ disability. It’s simply through illustrating that we are here and we are among you, probably closer than you realise. I think of this particularly in the instance of parents facing a foetal diagnosis: This is the first time they’ve heard about a disability, or if they have, they’ve only heard about it in negative terms. Their instinctive reaction is horror and dismay, because they don’t know and they have never seen someone living with that disability. It’s an information overload, to go from what you thought was a bog-standard pregnancy to a Situation. We change that not by haranguing these parents with perinatal hospice counseling laws, but by ensuring that long before they even get pregnant, they’ve been exposed to disabled people doing stuff in society.

This is a tricky chicken or egg problem. The best way to show people that disability is normal and doesn’t have to interfere with quality of life is, of course, to show them lots of disabled people doing things — for them to see blind politicians and wheelchair using bankers and amputee grocery store clerks and mentally ill attorneys and Deaf professors and everything between. To show them in real life, to show them in the media, to show them in pop culture — and to do it in a way that normalises them, as for example when Tammy Duckworth got up and gave a speech at the DNC that had nothing to do with disability, as when Gabby Giffords did the same.

But in order to do that, we have to confront disablism and the barriers that keep people out. Disablism is fed by ignorance and fear, the only way to combat these things is to demystify, the only way to demystify is to destabilize disablism. That can feel like a frustrating closed loop, especially when successful (by societal standards) disabled people often take the tack of either concealing their disabilities as much as possible or go at it the opposite way and present themselves as inspirational figures, often doing more harm than good in the process.

Media and pop culture have tremendous social and political clout, and this is where the answer lies. It lies in forcing the media to tell disability stories without making them into weird, uncomfortable, kind of awful narratives that say more about social attitudes than they do about disability. It lies in pushing the creators of pop culture to include disability in a value-neutral context. If people see disability in the media they consume, whether it’s the pages of the Times or a favourite television show, it normalises, destigmatises, pulls disability out of the shadows. If we show that disability can accompany good quality of life when disabled people are supported and included, it changes the landscape when it comes to how we talk about life with disability.

Rather than arguing over ‘death with dignity’ and abortion for disability, we need to be talking about life with dignity and what it looks like, and the fact that it’s a lot closer than many arbiters of a life well lived seem to think.

Image: Erasmus Student Network, Flickr