Trusting What Disabled People Say
Why don't we listen when disabled people tell us about their lives?
Posted Sep 22, 2017
Do you feel sorry for disabled people? Why? Many of us who are not disabled find it hard to imagine that we could lead equally rewarding lives if we were disabled. But we don’t have to rely on our imaginations alone to understand what it would be like to be disabled. We have a great source of information all around us—we can listen to what disabled people are telling us first-hand.
Every disabled person is unique, of course, just as every non-disabled person is unique: it’s a mistake to generalize about what "the disabled" think, feel, or want. But it’s certainly true that many disabled people claim to value their disability, to regard it as part of who they are, and as something which enhances what life means to them.
This doesn’t mean that their disability is seen as an unalloyed good, with no downsides whatsoever. There are many downsides connected to the ways in which institutions, buildings or procedures are designed without disability in mind. Someone who values her disability can at the same time rightly demand that society place fewer obstacles in her way, literally or metaphorically.
And after all, almost nothing in life which is worth having is an unalloyed good. We’re all sometimes driven to distraction by our kids, our friends, our hobbies, or our jobs, no matter how much we love them overall. Even people endowed with extraordinary beauty or talents will sometimes feel the downside of those blessings.
But on the other hand, a person valuing their disability doesn’t just mean that they can find some scrap of comfort in the way that they or others deal with their disability, as sometimes people find some comfort after a bereavement, by learning about their inner strength or deepening their relationship with friends. Plenty of disabled people value their lives with disability, not just despite their disability.
So why do we find it hard to believe that disabled lives can flourish richly, and be every bit as worthwhile as non-disabled lives? In general, if someone tells us they’re happy with who they are, that they value their life and identity, we tend to take their word for it even if we value our different kinds of lives. But many able-bodied people struggle to imagine how disabled lives could be just as rewarding as non-disabled lives, no matter how many times disabled people tell us differently.
In her book The Minority Body, philosopher Elizabeth Barnes argues that we need to take disabled people more seriously, to understand them as legitimate experts about their own quality of life. Any given disabled person is just as sincere, self-knowledgeable, and trustworthy as anybody else, and is entitled to the courtesy and respect of being listened to properly.
In Barnes’s view, we too readily make well-intentioned but damaging assumptions. We think that disabled people who claim to value their disabilities have succumbed to a kind of Stockholm syndrome. That is, they have persuaded themselves that their lives are rewarding only because acknowledging the terrible reality would be just too painful. To use the jargon, we think that someone who values her disability has "adaptive preferences" shaped by a lack of alternatives.
But, as Barnes points out, this is just circular logic. If we don’t take disabled people’s claims seriously because we think their lives must be terrible, we close ourselves off to any genuine understanding of what life with a disability can be like, in all its infinite variability.
When we don’t listen properly, we disrespect disabled people, but we also limit our own insight into the richness of human experience. When people tell us about their lives, our primary job is to listen, not to pity.
Elizabeth Barnes The Minority Body, Oxford University Press 2016 - chapter 4. 'Taking Their Word For It'.
Elizabeth Barnes's website links to some interviews and podcasts in which she talks about her life and her ideas