Does a disability necessarily make you worse off?

‘Being disabled is a way of being a minority,’ says philosopher Elizabeth Barnes

“Yes, disability often involves some losses and hardships, but it involves many other things as well,” says Elizabeth Barnes, author of ‘The Minority Body: A Theory of Disability’

“Yes, disability often involves some losses and hardships, but it involves many other things as well,” says Elizabeth Barnes, author of ‘The Minority Body: A Theory of Disability’

 

Disability is generally thought of in the negative. The very word tends to conjure up a lack of something, a disadvantage or a hardship. But this needn’t be the case, and our first impressions can sometimes blind us to the unique qualities, talents and insights of people with disabilities.

More than that, we tend to see disability as a “bad” difference to the norm, whereas it could instead be seen as a “mere” difference, says philosopher and author Elizabeth Barnes.

“Being disabled is a way of being a minority with respect to one’s body, just as being gay is a way of being a minority with respect to sexuality. It is something that makes you different from the majority, but that difference isn’t by itself a bad thing,” she writes in a perspective-altering new book, The Minority Body: A Theory of Disability.

Barnes herself has a disability – Ehlers-Danlos syndrome, a collection of tissue disorders – which gives her a special insight on the issue. She says: “A lot of the difficulties about being disabled, in many cases, aren’t inevitable. They’re the result of lack of accessibility, accommodation, and social support for disabled people.”

Thus, she advances the arresting idea: “Being disabled is not something that by itself or intrinsically makes you worse off.”

People might find it hard to accept that disability is a “mere” difference rather than a “bad” difference. How do you justify the claim?

“Yes, disability often involves some losses and hardships, but it involves many other things as well.

“There’s a disability activist and storyteller named Kim Kilpatrick who talks about her experience of being blind, and one of the things she emphasises is that, for her, being blind isn’t just not being able it see: it’s also not being able to stereotype and judge people based on what they look like; it’s having no sense of self-consciousness about her appearance or sense of what she, as a woman, ‘ought’ to look like, and so on...

“There are many things about being disabled that a lot of disabled people value.

“I like to make the analogy to being female. Having a female body is complicated, and there’s some stuff about it that I don’t like. Some of that is due to sexism, but some of it is just the reality of living in a body that menstruates and can get pregnant and is subject to various hormonal vagaries. But as much as those things can be difficult, there’s also so much that’s wonderful and valuable about being female.

“We can acknowledge the difficulties without erasing the value. Increasingly, thanks in part to growing awareness of disability pride and disability acceptance, disabled people are saying similar things about their experiences of their bodies. Yes, it can be hard and complicated, but it can also shape your life and your sense of self in a way that’s valuable.”

How would you categorise a disability that is likely to shorten your lifespan? Surely, that would be a “bad” difference?

“I think we can distinguish between calling a disability ‘mere’ difference and calling every single aspect of that disability ‘mere’ difference. This can be tricky for people to understand, I think, because we tend to think of disability as just a collection of symptoms, rather than a complicated relationship between a person’s body and the society they inhabit.

Laura Hershey was a disability-rights activist who was adamant that the best thing for disabled people was better access to employment, assistive technology, health insurance, etc rather than the search for ‘cures’. She argued that focus on cures is an apolitical solution to a fundamentally political problem: that our society isn’t really set up to accommodate a wide range of bodies, including disabled people, elderly people, pregnant women, and so on.

“Rather than addressing this problem by trying to make things more accessible, the temptation is always to change things by finding a way to change the bodies of disabled people, even if that’s not what they want, and even if that’s ultimately not a practical solution.

“After all, people will always continue to become disabled, and people will always grow old and infirm - that isn’t going to change.

“Hershey herself was adamant that she would not want a cure for her own disability - muscular dystrophy. But she did campaign for better research to extend the lifespan of people with muscular dystrophy.

“What she emphasised is that people tend to interpret this, incorrectly, as disabled people wanting to become non-disabled, when for her that’s not at all what it was. She wanted research that would allow her to live longer as a disabled person, not research that would turn her into a non-disabled person.

“I think we can say that for Hershey, there might be aspects of her disability – including reduced lifespan – which were ‘bad’ difference, even though her overall experience of disability was something she valued deeply, and did not consider ‘bad’ difference.”

In a future where artificial intelligence abounds might all human life be considered “disabled”? And could this be an argument for embracing your model of “disability as difference” rather than “disability as inferiority”?

“There’s a great episode of Star Trek: The Next Generation where a character who has empathic abilities suddenly loses those abilities, and declares that she is disabled and should not continue to work in her normal job. And the humans that she works with are all incredibly offended, because she is in effect saying that their normal state is disabled, and they find this appalling.

“I find cases like these really interesting to think about, because one thing I think they drive home is that disability is often about a contrast between what we consider normal and what we consider defective - and those are both social categories that are highly subject to change.

“If you want to read some incredibly interesting and slightly disturbing philosophical history, look at post-Aristotelian accounts of the female body that were popular during the middle ages. For hundreds of years it was ‘common sense’ to think that male bodies are the norm, and that female bodies are quite literally deformed male bodies.”

What are the implications of your argument for debates on abortion? It has been claimed, famously by geneticist Richard Dawkins, that knowingly bringing a severely disabled child into the world is immoral

“Some people think that you are obligated not to bring a disabled child into existence if you can, and frankly I think that’s nothing more than rank prejudice.

“There is so much evidence – both from hedonic psychology and from the vibrant and growing disability-rights community – that disabled people lead rich, wonderful lives and do not, in general, rate their quality of life as lower than nondisabled people – although studies show that nondisabled people typically assume, falsely, that disabled are not as happy or satisfied as nondisabled people.

“But let’s leave aside the issue of whether anyone is obligated to terminate a pregnancy. The trickier cases are not claims of obligation but rather claims of permissibility. It’s not uncommon, for example, for a woman to choose to terminate a pregnancy because she discovers that her child, if brought to term, would be disabled.

“I’m hesitant to say anything general about such cases, because there are so many factors – financial stability, social support, etc – that might be in play, and because in general I think we spend too much timing telling women what they should or shouldn’t do with their reproductive choices. But I do think that if someone chooses to terminate a pregnancy simply because they assume that a disabled child will not have a good life, or simply because they prefer to have a nondisabled child, it’s not unreasonable to view that choice as rooted in prejudice and misunderstanding of what disabled people’s lives can be like.”

ASK A SAGE

Question: Should one ever pity someone with a disability?

Neil Marcus (American disability rights activist) replies: “Disability is not a brave struggle or ‘courage in the face of adversity’. Disability is an art. It’s an ingenious way to live.”

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