4/06/2015

What is it like for a disabled person to be disabled? Why people (wrongly) assume disabled people have lower quality of life


Many people assume without reflection that people with disabilities have lower quality of life than others. Philosophers have a particularly troubling tendency to make this assumption1, as Silvia Yee points out in her fascinating review of a prejudiced bioethics paper by Robert Sparrow:

"Philosophical arguments that devalue the experience of living with a disability tend to be written without any discernable reference to the lived experience of an actual person with a disability." -Silvia Yee

Only a philosopher would have the hubris to make sweeping assertions about the quality of people's lives without even thinking of asking them if they agree.

Yet, laypeople make similar assumptions all the time. They do so, I think, because the way we normally try to imagine what someone else's life is like doesn't actually work for people whose lives are very different from our own, and completely falls apart when imagining the lives of people with disabilities.

Suppose you are looking at someone who can't walk and imagining what their life must be like. Most likely, you imagine your own life, only with walking removed. Of course, if you've been walking all your life and you suddenly can no longer walk, you can no longer do many things you enjoyed. You may not know how to find new ways to work, visit friends, run errands, and travel. Thus, life will seem narrower and unhappier, and you will assume the disabled person's life is as narrow and unhappy as you imagine it to be. But chances are, they will not agree. In fact, abled people consistently rate disabled people's quality of life and happiness lower than the latter rate their own2. An example would be this survey of 284 people with Down Syndrome belonging to national organizations, 99% of whom like their lives, 97% of whom like themselves, and 96% of whom like how they look. This suggests our approach to assessing their quality of life is faulty.

I am ashamed to admit that as a child who did not know anyone with visible disabilities, I made this mistake, so I know from the inside how it works. I remember wondering whether it would be sadder to be deaf and not be able to hear music or blind and not be able to see color! (Besides the obvious ableism here, I also completely misunderstood how being deaf works. Deaf people can usually still hear vibrations, and sometimes other sounds, and thus can still experience a lot of music, just in a different way than hearing people). The only thing I got right was recognizing that babies who can't talk yet, and show no evidence of thinking in words, are still thinking.

Anyway, the abled person here is making the same mistake as someone who pretends to be poor for a few months or a year, never having otherwise been poor, and assumes they have learned something about what it's like to be poor. (Such people are well-intentioned and do an excellent job of highlighting the ways society mistreats poor people; however, they are not experiencing these problems the way an actual poor person would). For example, actual poor people know all sorts of tricks for taking care of themselves without spending money that someone "playing poor" would not. Consider the strategy of buying your bread and produce at the end of the day from stock that is still basically good, but the shopkeepers would otherwise throw away. When someone who has been poor tells you about doing this, it seems obvious, but I would bet most people who haven't been poor wouldn't automatically consider this shopping possibility.

Just as someone "playing poor" doesn't know what it's like for a poor person to be poor, so someone imagining what it would be like to be disabled can't imagine what it's like for the disabled person to be disabled. And just as poor people resourcefully navigate poverty and lead full lives, disabled people find ways to work, make friends, have hobbies, and run errands. They just do so in ways others don't, and maybe couldn't imagine.

This is why, as Emily Ladau explains, disability simulations don't work.

Thomas Nagel3, in his brilliant essay "What is it like to be a bat?" points out that when we try to imagine what it's like to be a bat, we imagine what it would be like for us to be a bat. We add fur, or better hearing, subtract eyesight, imagine looking at things from above because we're flying, or inverted because we're hanging upside down. We have no other choice because we've only been us; we know no other way of being. But these additions and subtractions may have nothing to do with what it's like for a bat to be a bat. I don't know if Thomas Nagel thought of applying this distinction to people with disabilities, but it explains why disabled people's own assessments of their quality of life are always higher than abled people assume).

(This example suggests another point relevant to disabilities. Occasionally, as when thinking about savants or "troubled geniuses," we imagine what it would be like to be them by adding rather than subtracting. We might add "intense mood swings" or "divergent thinking" or "the ability to calculate large numbers in my head," although I doubt anyone without such traits can imagine them very accurately. But imagining-by-adding is no more realistic than imagining-by-subtracting. Vincent Van Gogh wasn't you with some extra creativity and mental illness tacked on, any more than an intellectually disabled person is you with IQ and academic skills subtracted away. So, don't make the mistake of thinking you're doing right by people with disabilities if you simply stop imagining-by-subtracting. The problem goes deeper than that).

The question, "what it's like for whom?" may seem like an academic issue when considering it in the context of an academic paper, but when you're assessing the value of a disabled person's life, it becomes anything but academic. You cannot imagine a disabled person's life simply by imagining what it would be like for you to suddenly have a disability. A disabled person's life is not your life with something subtracted, or even added. It is a different sort of life entirely. You cannot imagine it accurately; they are the experts on their own lives. But if you listen, if you practice empathy and imagination, you can learn something about what it is like to be them.

UPDATE: FURTHER READING
To see how these principles apply to attempts to simulate living with a disability (and why these are ableist as well as ineffective), see Emily Ladau's "I won't pretend that disability simulations work."

Brenda Rothman makes a very Nagel-like argument here, where she addresses fears that her autistic son might be "missing out" on "normal childhood experiences."
"Children with a disability do not have a life 'minus.' They have a life, period. It's their life. It's not some other child's life, their parent's life or their peers' life. It's their life."
Amanda Forest Vivian explains why insider and outsider perspectives on disabilities are so different here. Disabled people have integrated disability into their self-image in ways that non-disabled people haven't, and however they feel about their disability, that transforms how they view and talk about it.

These issues also apply to all sorts of people, not just those with disabilities. In "Imagining the Lives of Others," Paul Bloom outlines a paradox: we are fascinated by what others experience, but are in fact very bad at knowing what it's like to be someone with a very different life experience.  He, too, notes the limitations of attempts to take on other identities, like Norah Vincent's posing as a man in "Self-Made Man" and John Howard Griffin's disguise as a black man in "Black Like Me." Paul Bloom suggests that rather than give up on understanding others' experiences or put faith in simulations, we should listen to others' descriptions of their experiences with respect and humility:

"These failures should motivate a certain humility when it comes to dealing with the lives of others. Instead of assuming that we can know what it is like to be them, we should focus more on listening to what they have to say. This isn’t perfect — people sometimes lie, or are confused, or deluded — but it’s by far the best method of figuring out the needs, desires and histories of people who are different from us. It also shows more respect than a clumsy attempt to get into their skins; I agree with the essayist Leslie Jamison, who describes empathy as “perched precariously between gift and invasion.

...None of this is to say that the project of experiencing the lives of others should be abandoned. Under the right circumstances, we might have some limited success — I’d like to believe that novels and memoirs have given me some appreciation of what it’s like to be an autistic teenager, a geisha or a black boy growing up in the South. And even if they haven’t, most of us are still intensely curious about the lives of other people, and find the act of trying to simulate these lives to be an engaging and transformative endeavor. We’re not going to stop.

But we’re not good at it, particularly when the stakes are high, and empathic engagement is far too fragile a foundation to ground public policy. To make the world better, we shouldn’t try to put ourselves in the shoes of Eric Garner or anyone else. Our efforts should instead be put toward cultivating the ability to step back and apply an objective and fair morality."



1 If you want to keep your blood pressure at healthy levels, don't read anything by the notoriously ableist Peter Singer.
2 Morton Ann Gernsbacher, personal communication, 2014.
3 Ironically, while philosophers seem particularly susceptible to assuming they know what it's like for a disabled person to be disabled, the person who best articulates their fallacy is himself...a philosopher.