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Dec. 30th, 2013 09:06 pm
Caring what people think
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nightengaleskndCara, who blogs brilliantly at That Crazy Crippled Chick, wrote a piece this week on disability binarism. It went viral, and rightly so. Read it, if you haven’t yet.
I didn’t have that term before, disability binarism. I’d had the experience of course. I tried to get at it myself a bit with the “Everything Box” and the “Nothing Box” back here in Little Boxes. The idea is that people with disabilities are classically seen as either all-disabled, or non-disabled (and often then by extension, faking.) The idea that people can have partial disability, for example being able to walk under some circumstances but using a wheelchair for others, or being able to write a little but not whole essays, or being able to see some things while still being legally blind – it’s an idea that confuses many people. The idea of fluctuating disability, where a person’s abilities can truly differ from time to time and circumstance to circumstance, while a very common disability experience, is almost unfathomable in conversations about and portrayals of disability. The notion of limited resources, where one may have the stamina for an activity today, at the expense of pain or fatigue tomorrow, simply boggles many outside of the disability experience.
But what I want to focus on isn’t what Cara said, which is spot on, but what some people have been saying in response to her when she points out the harm done by disability binarism.
The gist of the response is that she shouldn’t care what people think when she uses a wheelchair but then stands or walks some, and she shouldn’t let it affect her.
You’d think I’d be the last person to ever post about the importance of what people think. I’d certainly think that. Despite taking to heart the Miss Manners quote that “not caring about what people think” can lead to “not caring how I make other people feel,” I believe there is a big difference. Historically, I have not cared about what people think of my actions, so long as they hasn’t been harmful. Despite popular opinion in 8th grade, my wearing of saddle shoes was not harmful to anyone else. My use of a luggage rack in college was not harmful to anyone else. My lack of interest in romantic relationships is not harmful to anyone else.
But treating the problem with disability binarism as a problem only if you let it bother you misses the point. What people think about disability has real consequences, for an individual and for people with disabilities as a group.
When someone I know in a professional setting looks at my cane and expresses confusion that I enjoy folk dance, that isn’t just an irritating problem I should let go. It means that, were he to become my employer, I might be seen as “faking” my need for mobility-related accommodations. Because I can dance. Why can’t I climb stairs or sit on a rolly-stool or, well, walk better?
In a professional setting, this can lead to having to hide one’s true abilities. I have worked in places where people didn’t know I could write several sentences with a pen, because it wasn’t safe for my academic future. If I wanted to be permitted to type, I couldn’t let on that I could write under some circumstances. They would try to push the window, dictate to me what I could and couldn’t do. So sometimes we have to pick a side and play that side. I hate that it’s sometimes safer to play more disabled than reality, but it’s sometimes the only way to survive at work, or school, or on public transit.
Caring what your bus driver thinks matters, if you are relying on the driver to kneel the bus, or tie down your mobility devise, or advocate for your right to a seat.
There is such a thing as 100% disability, according to the VA. You don’t even have to be all that disabled. They count percentages additively. So much for loss of use of one hand. So much for an eye condition. So much for this kidney problem. You can reach 100% pretty quickly and still be able to live independently, communicate and take care of your activities of daily living. I’m not saying that such a person doesn’t have a disability, just that 100% doesn’t mean what many people might think it means.
Cara describes living on the grey area of disability, and I do too. I think many of us who I tend to call “in the CP club” and she calls “palsy people” do. Many autistics do. Many “spoonies,” people with invisible chronic illnesses do. The Spoon Theory itself speaks to disability as grey and fluctuating and conserving energy today to expend tomorrow.
And it matters, not because of how we feel as individuals encountering annoying misconceptions, but because society’s view of the disability binary wields power that can and is used against us, individually and collectively. It doesn’t matter what people think, except when they are able to use what they think against you.
So we can try to stop caring that they think inaccurate and harmful things about us, or we can continue to try to change these harmful thought processes through education and advocacy.
I for one am glad Cara is trying to create change for the better. And I’m glad people are listening.
I didn’t have that term before, disability binarism. I’d had the experience of course. I tried to get at it myself a bit with the “Everything Box” and the “Nothing Box” back here in Little Boxes. The idea is that people with disabilities are classically seen as either all-disabled, or non-disabled (and often then by extension, faking.) The idea that people can have partial disability, for example being able to walk under some circumstances but using a wheelchair for others, or being able to write a little but not whole essays, or being able to see some things while still being legally blind – it’s an idea that confuses many people. The idea of fluctuating disability, where a person’s abilities can truly differ from time to time and circumstance to circumstance, while a very common disability experience, is almost unfathomable in conversations about and portrayals of disability. The notion of limited resources, where one may have the stamina for an activity today, at the expense of pain or fatigue tomorrow, simply boggles many outside of the disability experience.
But what I want to focus on isn’t what Cara said, which is spot on, but what some people have been saying in response to her when she points out the harm done by disability binarism.
The gist of the response is that she shouldn’t care what people think when she uses a wheelchair but then stands or walks some, and she shouldn’t let it affect her.
You’d think I’d be the last person to ever post about the importance of what people think. I’d certainly think that. Despite taking to heart the Miss Manners quote that “not caring about what people think” can lead to “not caring how I make other people feel,” I believe there is a big difference. Historically, I have not cared about what people think of my actions, so long as they hasn’t been harmful. Despite popular opinion in 8th grade, my wearing of saddle shoes was not harmful to anyone else. My use of a luggage rack in college was not harmful to anyone else. My lack of interest in romantic relationships is not harmful to anyone else.
But treating the problem with disability binarism as a problem only if you let it bother you misses the point. What people think about disability has real consequences, for an individual and for people with disabilities as a group.
When someone I know in a professional setting looks at my cane and expresses confusion that I enjoy folk dance, that isn’t just an irritating problem I should let go. It means that, were he to become my employer, I might be seen as “faking” my need for mobility-related accommodations. Because I can dance. Why can’t I climb stairs or sit on a rolly-stool or, well, walk better?
In a professional setting, this can lead to having to hide one’s true abilities. I have worked in places where people didn’t know I could write several sentences with a pen, because it wasn’t safe for my academic future. If I wanted to be permitted to type, I couldn’t let on that I could write under some circumstances. They would try to push the window, dictate to me what I could and couldn’t do. So sometimes we have to pick a side and play that side. I hate that it’s sometimes safer to play more disabled than reality, but it’s sometimes the only way to survive at work, or school, or on public transit.
Caring what your bus driver thinks matters, if you are relying on the driver to kneel the bus, or tie down your mobility devise, or advocate for your right to a seat.
There is such a thing as 100% disability, according to the VA. You don’t even have to be all that disabled. They count percentages additively. So much for loss of use of one hand. So much for an eye condition. So much for this kidney problem. You can reach 100% pretty quickly and still be able to live independently, communicate and take care of your activities of daily living. I’m not saying that such a person doesn’t have a disability, just that 100% doesn’t mean what many people might think it means.
Cara describes living on the grey area of disability, and I do too. I think many of us who I tend to call “in the CP club” and she calls “palsy people” do. Many autistics do. Many “spoonies,” people with invisible chronic illnesses do. The Spoon Theory itself speaks to disability as grey and fluctuating and conserving energy today to expend tomorrow.
And it matters, not because of how we feel as individuals encountering annoying misconceptions, but because society’s view of the disability binary wields power that can and is used against us, individually and collectively. It doesn’t matter what people think, except when they are able to use what they think against you.
So we can try to stop caring that they think inaccurate and harmful things about us, or we can continue to try to change these harmful thought processes through education and advocacy.
I for one am glad Cara is trying to create change for the better. And I’m glad people are listening.
no subject
As much as I hate to admit it, this is so true. People just assume that I can see nothing or that I can see everything. It's so much easier sometimes to say I can't see something than to try and explain that I can actually see a bit. Part of the problem is that when I tell someone I can see something they often assume I can see it perfectly, like they can, when what I really mean is that I can see where the thing is and perhaps identify it, but not see smaller details.
When I was a teenager and first venturing out around the city on my own, I was terrified that someone would accuse me of faking blindness. I felt hugely self-conscious about using a white cane, not because of the cane itself, but because I knew even back then that most people watching me would assume I had no vision. On rare occasions, like when I'm in a library or bookstore, I still feel self-conscious enough to fold it up, because I can just imagine people wondering what a blind person is doing in a bookstore.
I hate it every time I do it, because as you point out, the only way things will change is if people become educated. But it's the type of tacit knowledge that's very difficult to convey to someone who hasn't experienced it (or known a close friend or relative who has).
And, sadly, it's not just sighted people who have this type of thinking. I've been asked repeatedly by people who are totally blind why I use braille or a cane when I can read large print and see enough (in many environments) well enough to get around relatively safely, as if I'm somehow not entitled to these accommodations. I'm not sure if this is the same among other disability communities.
No one has ever accused me of faking, though (aside from the government employee who practically yelled at me over the phone for lying when I was 18, because I wasn't blind if I had some vision!), and in recent years I've even begun having people ask me how much vision I have or how much I can see, which is really nice!
no subject
no subject
I will never understand why people make a fuss over accommodations like requesting they kneel the bus - things that cost them nothing, but make access possible for me. If it costs you nothing, why are you so adamant about not giving it to me?