Things That Make My Life Easier, A Reintroduction (Part 2 of 3)

Part 1Part 2 — Part 3

In the realm of disability, there is a lot of terminology like: assistive device, accommodation, care services, mobility aid, various sorts of therapy/treatment (physical/behavioral/occupational/speech/etc.); and so forth, about things/people/services which fill various common needs that people with disabilities share. The unfortunate thing about these terms is that they imply particularity to disability. But in truth, these things are not special to disabled people.

What are the needs being met? Things like: mobility and transportation, mental function, physical wellness, self-care. But we do not name the things abled people use to fill those needs as being special to abled people. This is because ability is an unmarked identity. That is, ability is seen as normal. The needs and behaviors surrounding ability fade into invisibility; they are not about ability, they just are. But disability is marked — it is special, notable. It can never just be; it is always about something, always representing and signifying something particular.

Along those lines, consider these examples:

  • When an abled person wears shoes, they are not called “mobility aids.” Shoes are just things that normal people wear to do normal things. But canes, wheelchairs, and braces are special “mobility aids,” rather than just being things that normal people use to do normal things.
  • When an abled person rides in a car, bicycle, or public transportation, they are not using “mobility aids.” They are just using transportation.
  • When an abled person gets their hair cut, the stylist is not called their “personal care assistant.” Only disabled people need assistance with personal care tasks.
  • When an abled person eats a meal cooked for them by someone else — a spouse or parent, a cafeteria or food court, a restaurant — the person preparing the food is not their “personal care assistant,” despite doing for the abled person the same thing PAs do for PWD every day.
  • When an abled person uses a remote control on their television, this is not called an “assistive device.”
  • When an abled person types out words on a plastic board with small key blocks indicating letters of the alphabet while staring at a screen, or speaks words into the bottom area of a plastic-and-metal hand-held electronic device while holding the top to their ear, this is not called “facilitated communication.”
  • When an abled person is put through training at their place of work so that they can learn the tasks they will be performing for pay, this is not called “occupational therapy” or “vocational therapy.”
  • When an abled person wears a bra, or a jock strap, or any clothing at all, this is not considered in the same category as slings or braces.
  • When an abled person climbs the stairs, they are not considered to be a special device thought up just for abled mobility.
  • When an abled person takes the escalator, they are not considered in the same category as the elevator or wheelchair ramp.

The trend evident here is that there are all sorts of things that help people live their lives. Having help to accomplish things — basic or beyond — is not special to disability. It is a fundamental part of humanity. Our society would not exist without all the little things we do, from products and tools to techniques and tricks to other people and relationships, to help us get through this world a little bit easier.

I want to emphasize this for a reason. A common trope in mainstream discussion on disability is that disabled people are helpless, and abled folk must take on the noble burden of keeping them alive, afloat. Disabled people need help with doing things, and it’s such a pitiable condition to be in, dependent on other people and things to get through life. Abled people pat each other on the back for the strength and courage and sacrifice they make in helping disabled people in their family or community. They often lament that would kill themselves before living as a person who needs help with things! And some of them take their considerable platforms to argue that because disabled people need help with doing things, their lives must not be good-enough-as-they-are, therefore their lives are not worth living at all, and we (the abled world) should withdraw all help and let them all die like they should have done as infants. (No, seriously, if your name is Peter Singer and/or you are the New York Times, this is what you say in all seriousness.)

In short, this idea of help-as-special-to-disability can be dangerous.

This is why I’ve come to like Things That Make My Life Easier: because that’s what they are. They aren’t super-special things that only people with disabilities can use. They aren’t super-special things that only people with disabilities need. They also aren’t things to be ashamed of. It shouldn’t be a hit to anybody’s pride to take shortcuts or to do things in an unconventional way. It shouldn’t be a possible insult to disabled people to associate themselves with icky, pitiable disability, and it also shouldn’t be a point of anxiety for disabled people who have concerns about admitting any sort of dependence or need for help. We can admit that we need things — or even just that those things are nice to have around — without it having to be a referendum on our identity, on our worth as a human being.

Or at least, I’d like it if we were able to!

So some of the things I post about are silly little things. Because they help me. Some of them are things that are particular to my disability — things that an abled person will likely not have to ever deal with, and may not be able to relate to — but that’s part of the human experience. I am a human being; there are other people like me who share these concerns, and they are human too. Part of the human experience is our experience. Because we are human. It shouldn’t have to be repeated like that, but it does. Disabled people have claim on the human experience. We can talk about our experience as disabled people, and it is not only about disability-in-particular, but about humanity itself. No matter how much it flames the insecurities of abled people, this is truth.

Next: An Invitation

Cross-posted: three rivers fog, FWD/Forward, Feministe.

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32 comments for “Things That Make My Life Easier, A Reintroduction (Part 2 of 3)

  1. William
    August 21, 2010 at 9:56 am

    You’ve missed one important thing though, Amandaw: if able folks were to start thinking about all the things they use to make their lives easier in the same way as they think about assistive devices, how will they be able to maintain the distance between themselves and those poor disabled folks? How will they be able to maintain their sense of superiority? How with they be able to push their fears about the limits of their own minds and bodies into us? How will they rationalize excluding us so they don’t even have to bear the terrible burden of seeing us? Treating disabled folks like humans….think of what it would do to the poor abled (for now, maybe) folk!

  2. konkonsn
    August 21, 2010 at 11:33 am

    I remember at one point realizing that my glasses meant I was disabled, but because it’s such a common disability (and one that comes with certain positive stereotypes), nobody makes a big deal about it. I didn’t continue that thought all the way, though, so thanks for writing this. I’m definitely seeing the world in a new and much better light.

    One of my psychology teachers used to say we’re all becoming cyborgs because of the amount of technology used to help our bodies go beyond their limits, and I have to agree…

    • August 21, 2010 at 11:57 am

      There were two reactions I was really fearing I’d have to this…

      The first was TABs becoming defensive about the fact that they are not normal and disability is not especially dependent. That being dependent is being HUMAN. Disabled people are not “dependent” and nondisabled people “independent.” We all depend on the support of others, their actions and their production, to make it through life. Some people cling very tight to the idea of independence — especially in feminist circles, I’ll note. I knew it was possible this would become contentious. So far, not, but that may be because I (possibly intentionally) scheduled this post for early on a weekend morning in Internet Time (western European and eastern North American time zones, which presume themselves the most important).

      The second was anyone trying to use the post to claim that basically, then, disabled people are the same as non, that they don’t have problems, or the ever-popular “we’re all a little bit disabled.”

      It’s nowhere near true, not right now, not in our social context. Maybe in social-model utopia, but not now.

      You aren’t disabled because your eyesight is poor. Disability is a function, mainly, of society shutting out certain types of people from full participation in society because of their physiological or neurological difference. Disability is a function of a society built around a certain Type (as in the same word from “neurotypical” etc. — a certain type of brain and body that were decided upon as the norm and presumed default) and their needs and preferences.

      If you are a middle-to-upper class person in a “first world” industrialized and dominant nation, and you have poor eyesight that is corrected by corrective lenses, you are not shut out from full participation in society due to your imperfect eyesight. It is not a disability. [ed. note – edited for clarity, about 2min after posting].

      Society is built around the needs and preferences and conveniences of the sighted, and bringing a sighted person with imperfect sight to functionally-perfect sight is so simple and unremarkable because our society has decided it important to serve that need.

      The idea of glasses as a metaphor for disability is highly useful to illustrate the social model! But “therefore, everyone is a little bit disabled” it is not.

  3. Jodie
    August 21, 2010 at 11:59 am

    Thank you for the paradigm shift!

  4. oldlady
    August 21, 2010 at 12:07 pm

    Thank you for writing this. You have every bit of it exactly right. My husband spent the last fifteen years of his life in a wheelchair because of a stroke. I saw him objectified, patronized, and demonized over the years—even by friends. Disability frightens the abled. They are afraid they will catch it.

  5. August 21, 2010 at 12:25 pm

    Peter Singer makes me sick. Doesn’t he advocate killing disabled babies at birth?

    All lives are equally valid. Human life is an end in itself, not a means to an end.

    RE: Men who use a wheelchair. I had a friend at work who used a wheelchair. He got mad when I didn’t let him hold the door open for me. I had thought I should hold it for him, but he said that he was the guy and the guy opens the door, dammit. (This was the south, where the man also pays for the date, even on a blind date. Which was unnecessary but nice.)

  6. August 21, 2010 at 12:35 pm

    Thank you for this amazing post. I’m so happy to see you guest blogging here again.

    To add to your list, one other thing that infuriates me is the way that certain activities get marketed to children with disabilities. Horseback riding is “horse therapy,” swimming is “aqua therapy,” etc. I’ve even heard of “Lego therapy,” urgh. Yet when children without disabilities do these things they’re just taking horseback riding lessons, etc. I suppose the only way society can justify allowing children with disabilities to engage in recreational activities is to call it “therapy.” Because everything we do must be geared towards making us more normal and acceptable!

  7. August 21, 2010 at 1:31 pm

    I don’t necessarily think calling something a “mobility aid” is a bad thing or othering. My wheelchair is a mobility aid. When I am in a car, I think “I am in a car” not “I am using a mobility aid”…same thing with a remote or an elevator or wearing shoes. I understand your point that abled people use assistive devices as well, but so do disabled folks. We just use a few extra, and there’s nothing wrong with that. I believe that’s what needs to be stressed – there is nothing wrong with needing help to do tasks that the abled have no trouble doing. I need people to aid me in bathing, dressing, feeding, etc. Abled people don’t need PCAs to help them with that. It’s just a fact of life.

    There is a difference between needing extra help for certain tasks and being helpless. Abled confuse the two, and I don’t believe it’s from thinking we need additional assistance with things. I just think it’s a simple fact of ignorance. If more abled folks were educated about the lives of actual disabled people, and see we are just like them and are able to function with the extra help we receive, that will help.

    Disability is a tricky subject and I will definitely think more about this topic. Thanks for writing!

  8. Other
    August 21, 2010 at 1:40 pm

    >When an abled person is put through training at their place of >work so that they can learn the tasks they will be performing for >pay, this is not called “occupational therapy” or “vocational therapy.”

    This one really puts things in perspective for me.

    I didn’t really understand the shoes or bra analogies initially, because they are not personally mobility aids for me. Yet they are mobility aids for some, and I do use glasses, bikes, cars, phones, so I was entirely missing the point: we are all dependent in different ways, but certain ways are labeled as typical and more acceptable.

    Yet, it seems some aids are created by society (the need to have a phone or a car, for example–in another society, we could live without them). My question is, are there aids *not* created by society? For example, is a wheelchair universally necessary? Or is it necessary because our society doesn’t approve of other methods: someone with arm strength uses their arms to drag their body around, or someone cares for a person who mostly stays in one place, as possibilities. I am wondering about universality and how the definition shifts in other places (clearly a wheelchair is important in this society for someone who wants an easier time!).

  9. Andrea
    August 21, 2010 at 2:04 pm

    Great post, Amanda. You’ve opened my eyes to so many things, and I really look forward to the rest of this series.

  10. matlun
    August 21, 2010 at 3:00 pm

    @amandaw: I think it is interesting to discuss the perspective that “we are all disabled”. In a way, it is a good starting point to realize that we are all individuals and that someones disability do not completely define them. On the other hand it is semantically problematic in that with the normal meaning of the term “disabled” it is not true.

    However, I am not convinced that the definition is really an issue of “shutting out people from full participation in society” either, though. If for example you are missing your foot but are able to walk without problems with a prosthesis, you would not be shut out from participation, but I would still classify this as a disability.

    Does my understanding of the terms match yours? (Honest question – I am always interesting in learning when I am wrong…)

  11. Kaz
    August 21, 2010 at 3:32 pm

    Thank you! Somehow, although these concepts had been floating around in my brain before, seeing all this put together like that – seeing all the “assistive devices” and “special help” and so on CND people use on a regular basis – really made it click for me in a way it hadn’t previously. This is a truly excellent post, and I suspect I’ll be bookmarking it to try and explain disability-is-not-inherently-bad to people for a long time to come.

  12. Kaz
    August 21, 2010 at 3:37 pm

    In particular, I should add, although I’d made the “mobility devices are not unique to disabled people” connection before, I have had and still use to some extent speech therapy for my disability and this is the first time I’ve realised that that is also something CND people do except not called speech therapy. (The closest equivalent I can think of right now is the sort of training people get to improve their oratory skills. Because that’s “let’s make you easier and more pleasing for people to listen to when you’re giving a speech”, and most stuttering therapies amount to something quite similar.)

  13. August 21, 2010 at 4:16 pm

    One of my psychology teachers used to say we’re all becoming cyborgs because of the amount of technology used to help our bodies go beyond their limits, and I have to agree…

    That’s going to mean something very different to a PWD than to an abled person. Often, PWDs are left out of this “cyborg” formulation–this technology is presented in ways that emphasize how it can benefit people who are already abled — who already have certain advantages.

  14. August 21, 2010 at 4:32 pm

    I wasn’t offended by what you were saying. I find it difficult at times to know how to talk about my bipolar disorder without invoking responses that lead to pity. I just don’t like being pitied because it’s often not followed by attitudes that seek to really understand.

    When I’m having an active episode, I may need help, but most of the time I’m relatively okay. However, I often resent the amount of time I have to put into being emotionally stable. I never get to forget how different I feel sometimes and often am not sure about how to talk about it with others.

  15. August 21, 2010 at 4:41 pm

    Well… maybe not “therefore, everyone is a little bit disabled”, but possibly “everyone lives on a spectrum of varying needs for assistance, and anyone can find their position fundamentally shifted without prior notice.” I get the point that a disability should be treated as just another point on the spectrum, as opposed to drawing a sharp line between abled and disabled people. If nothing else, the stupidity directed at disabled people by young abled folks shows a complete ignorance of the fact that as we get older, almost ALL of us need more help, and become “less abled.”

    It may well be an intentional ignorance, and all of the negative things mentioned here exist because people who aren’t disabled like to pretend that they can and will never be disabled, and they insist on drawing sharp lines to avoid considering any other possibility.

    Also, I wish disabled people would spend less time talking about disabilities, and start building missile launchers, oil slicks, and other James Bond gadgets into their “mobility aids”. That way, the next time some ass makes a snide comment, they can shoot them with a poison dart from their cane, or short out the jerk’s phone with an EMP blast from their wheelchair. Or, if nothing else, do what a friend of mine did and use his artificial leg to smuggle hash from Amsterdam into America. :)

  16. August 21, 2010 at 5:42 pm

    Yeah, I had a boyfriend who said that if/when he gets older and needs to be dependent on others for full-time care, he’d rather die than live like that. Really? So all those people who are alive and have people taking care of them–you never think that maybe they value their lives just as much as you value your (able-bodied) life?

  17. August 21, 2010 at 6:04 pm

    I’m 57, and as I get older I appreciate the term “temporarily able-bodied” more and more. Simple arthritis in my knees has me hopping mad (well, if I could hop without some pain) about subway stations without escalators or elevators. I positively want the head of whoever deemed upscalators acceptable, but downscalators an unnecessary frivolity, on a pike.

  18. alcoolworld
    August 21, 2010 at 8:31 pm

    I agree with this idea. In fact, I would suggest that “QALY” – the term Singer utilizes- could be interpreted as a white-wash of the thinking that causes Chattel slavery, The guillotining of “Disabled” persons in Nazi Germany, the Eugenic Experiments in almost all 20th century cultures, sexism, classicism, Etc. Ad nauseum.

    You aren’t disabled because your eyesight is poor. Disability is a function, mainly, of society shutting out certain types of people from full participation in society because of their physiological or neurological difference. Disability is a function of a society built around a certain Type (as in the same word from “neurotypical” etc. — a certain type of brain and body that were decided upon as the norm and presumed default) and their needs and preferences.
    — amandaw

    This I disagree with. I have worn glasses since I was twelve, and have been stygmatized to varying degrees ever since. I used crutches during a gout flair-up, and the things people said and did tended to be only a bit more consistent. A very Little bit.
    Tho, YMMV…

    Aside from that, very true, very powerful. Thank you.

  19. konkonsn
    August 21, 2010 at 8:40 pm

    Ah, sorry. Guess I still need to read more up on this…between you and wheelchairdancer from last week, I’m just now sort of discovering this movement’s language and ideas.

  20. Miss S
    August 21, 2010 at 11:53 pm

    This is an interesting post and it frames things to show how everyone is dependent on some things or people, disabled or not. It’s unbelievable how much ‘othering’ goes on. I have to ask- where do disabled people fit in who aren’t excluded by other people due to their disability- but are still excluded because of the nature of those disabilities? Those with (sometimes) invisible mental illnesses? OCD, depression, anxiety, etc.

    I should add: if you’re upper/middle class and can afford eyecare, it’s not too big of a problem. Most people aren’t and vision isn’t covered under alot of insurances. If someone has astigmatism and no insurance (which is a luxury here in the U.S) then it’s a pretty big problem. Just a reminder that something as ‘simple’ as glasses in other places isn’t simple here.

  21. Ian
    August 22, 2010 at 12:09 am

    Annaham: One of my psychology teachers used to say we’re all becoming cyborgs because of the amount of technology used to help our bodies go beyond their limits, and I have to agree… That’s going to mean something very different to a PWD than to an abled person. Often, PWDs are left out of this “cyborg” formulation–this technology is presented in ways that emphasize how it can benefit people who are already abled — who already have certain advantages.  

    That formulation does exist, and I think it does miss the fact that PWDs are already ahead of the curve there. (Speaking here as someone who grew up with hearing aids and now has a cochlear implant, among other bodily-augmentive tech.) But I have noticed an openness among transhumanists to acknowledge that perhaps some of their discussions – what makes us human, how do these changes in our capabilities affect our relationships with each other, with our sense of self – are not original to them. And I identify proudly as a Cyborg-American.

  22. karak
    August 22, 2010 at 12:57 am

    I’d like to add to your point a little. Sometimes two things are completely identical and they mean one thing when applied to the abled and another to those considered disabled.

    If someone is abled, and they hire a person to help them clean and maintain their living space, they have hired a maid. If someone is disabled, and hire a person to do the exact same things, they have hired a homemaker or a personal care provider.

  23. jinny
    August 22, 2010 at 1:09 am

    I thought certain activities are categorized as “therapy” so that they are covered by medical insurance or are eligible under government programs. For example, horseback riding is a rather expensive activity, one that is not available to many people beyond those who live in the country and own horses (very expensive), or perhaps know people that own horses, or have the economic privileges of driving out to a horse stable and paying for lessons.

    Using the phrase “horse therapy”, “aqua therapy”, “voice therapy”, “(insert noun) therapy”, is a way to signify that the purpose of the activity is not exclusively recreational and aught to be supplemented or paid for.

  24. Mentally Interesting
    August 22, 2010 at 9:20 am

    I Truly appreciate the way you wrote this. I no longer have the way with words I once had. Some of us have different gifts…yours is writing, educating and well thought out posts.

    My “gift” is still evolving. I remember when I was first diagnosed, thinking “but I dont FEEL sick. I dont even look it” I sort of wish I looked like I was. People would be a lot more tolerant of certain things and behaviours I do, due to my special needs. In an able bodied world ignorance abounds, people seem to dread falling apart physically or mentally. So it is easier IMO to “use blame the victim” thing. its either our fault, we are making a big deal over nothing or we are “tortured souls” that need pity. ( That one came from my mom.. thanks mom!) Words hurt. Words also can empower. In some cases, I think it is the govt/medico world that uses the _________therapy type things due to funding and labeling for insurance and disability pay.

    I would like to get some of that horses or swimming or cruise ship therapy aint going to happen though. I get reviewed periodically for Social Security and the tests and questions are discouraging. “I dont feel sick or look it” pops up after I lay it out for a Doc. Denial is my friend and my enemy.

    I am not mentally ill, I am mentally interesting and my reality is mine. Maybe the “normals” are the ones who are wrong?

  25. Kristen J.
    August 22, 2010 at 9:39 am

    amandaw: Disabled people are not “dependent” and nondisabled people “independent.” We all depend on the support of others, their actions and their production, to make it through life.

    Absolutely brilliant.

  26. Miss S
    August 22, 2010 at 2:21 pm

    The definition of disability as you’ve presented it excludes an awful lot of people with disabilities. As Kevin pointed out, when not in an active episode, he’s ‘relatively okay’ and would not be excluded from society by others. It’s still a disability.

    Someone with ocd who does something repeatedly that draws attention but isn’t harmful or dangerous most likely won’t be denied entrance into a restaurant or store. It’s still a disability.

    No one has denied my entrance into or excluded me from society because of my anxiety (race is a different story). But I have not participated, or driven somewhere and not actually gotten out of my car because I was so anxious and sick- and the anxiety doesn’t necessarily stem from what I’m doing at that moment. I don’t need help with walking, cleaning, eating. It’s still a disability.

  27. Li
    August 23, 2010 at 7:51 am

    Miss S, as someone with anxiety and depression, I’d dispute that there isn’t exclusion and inaccessibility operating on people with mental illnesses. Exclusion doesn’t have to be overt and conscious discrimination. I think that the work of disability activists has made inaccessibility on the grounds of mobility or hearing or sight increasingly identifiable (but still nowhere near perfect), but that the accessibility requirements involved in a lot of mental illnesses are less easily identified by people and often viewed as being located exclusively in the mental illness. I spent the mid-semester break at a conference where a lot of people with anxiety disorders among a bunch of disabilities were vocal about expressing our accessibility needs, such as not having constant clicking or applause during stressful debates. It was really easy to measure the accessibility of the space when those needs were/were not being met.

    I’d also assert that there are a bunch of elements to disability which aren’t just about accessibility. One of the features of disability tends to be that it is stigmatised, and mental illnesses are most certainly stigmatised.

    I can’t claim to speak for Amandaw but my familiarity with both her previous writing and the social model of disability more broadly gives me the impression that disability-as-purely-conscious-exclusion isn’t really the definition being used here.

  28. Paraxeni
    August 23, 2010 at 10:12 am

    Li – I totally agree. It’s not always about conscious exclusion, disabilities of all stripes, but especially mental illnesses are almost de facto badges of ‘wrongness’ in language. If something is strange or bad it’s crazy, insane, mad, nutty, mental, schizo or psycho. If something’s broken it’s crippled, if someone makes a mistake then they’re a spastic, a flid, or a mong or a retard. People also diminish the real problems of some illnesses by making light of them, “I loved coffee yesterday, I hate it today, OMG I’m sooo bipolar!” or “I need to make sure my nails are kept smooth, I’m totally OCD like that”.

    I doubt if any of the people who fling these words around on a daily basis are using them to deliberately hurt PWD, but they do anyway, by sanctioning the use of disability-related words to imply brokenness, wrongness or just as demeaning terms. To hear something like that can ruin my entire day sometimes, whereas an inaccessible shop might just be enough to piss me off for an hour and write a letter.

  29. Alara Rogers
    August 23, 2010 at 11:20 am

    I really, really liked this post, because it managed to put into words something I have known and had a vague sense of how to describe, but couldn’t really articulate, for some time.

    My husband is legally blind. He is also a highly paid IT consultant who specializes in Microsoft products. When he went to take a certification test, they refused to let him have his magnifying glass — corporate policy, of the one company that Microsoft contracts with to do their certs. They didn’t refuse him (or anyone else) eyeglasses; just the magnifying glass… although there is NO EFFECTIVE DIFFERENCE in function between a magnifying glass, and glasses. And he feels like there’s nothing he can do about it, because in fact he passed the tests, so he can’t sue — he wasn’t denied access to anything. They just made his life harder than it had to be, and it’s just because he’s smart enough to overcome that hardship that it didn’t result in serious economic distress, but now he feels like, because he *is* smart enough that it didn’t cause him economic distress, that he has no legal standing to force them to change.

    My son has severe ADD. He’s also gifted. When we asked to have him moved to the advanced math class, because he was bored in the slower class, they told us “but the aide who assists the students who need help is in the class he’s in.” We insisted… and without the help of the aide to remind him to turn in his homework, he failed. But why did he have to be restricted to a single class, which couldn’t match his natural abilities, in order to get assistance with his disability? Why did he *fail* over something as stupid as “doesn’t write his homework down and forgets to turn it in when he does do it”, when anything from the teacher telling him “Turn in your homework now” to an aide helping him with writing down the homework to an email address we could have emailed scanned homework to could have saved his grades? But the attitude was “Well, we told you he’d fail if we put him in the advanced class, without the aide’s help.” Well, yes, especially since school policy forbids the use of cell phones on school grounds, and my son’s PDA that he uses to remind him of his meds… is a cell phone.

    In “real life”, people often have adaptive equipment they use on a regular basis to overcome disabilities, whether it’s medication they take, or computers that remind them, or magnifying glasses, or whatever — and then these bureaucracies create these environments where there’s this blanket rule that you can’t do X. You can’t bring anything into the test that isn’t considered clothing. (Glasses are, magnifying glasses aren’t.) You can’t have electronics on school grounds. So now you’ve artificially made people helpless, dependent on whatever adaptive assistance *you* are willing to provide — the “software that makes the font larger” for the tests, which doesn’t work well enough for my husband’s eyes, or the aide for my son that he could only get in the math class he was too smart to be in. it’s not a natural result of disability — in these cases, people *have* strategies that allow them to work at the same level as everyone else. But the bureaucracy denied them the use of that strategy, made them artificially helpless. How well would able-bodied people do in an environment where, for example, “You’re not allowed to turn on the lights. But it’s okay, because our staff with infrared vision will guide you to where you need to go in our completely dark office; just push the button for assistance and wait, and someone will be with you shortly!”

    I’d also like to point out, since this is a feminist blog, that as a short woman I have encountered similar issues, where things I need to use are constructed in such a way as to render me artificially helpless and incapable, because my body is not considered the default or in fact even worth considering. I don’t consider being a short woman to be a disability, and I certainly don’t think I encounter *nearly* the level of problems that people with disabilities do in terms of the artificial helplessness/systems designed to ignore what you can do in favor of what you can’t, but in this one area I think the problems sometimes intersect. For instance, on the weekend I went to the dump. The dumpsters are 8 feet tall. If you’re lucky and they just opened a new dumpster, the back might be open… but if you’re not, you have to somehow get your trash over the top of an 8 ft dumpster. I’m five feet tall and I drive a minivan, not a pickup truck — there’s no hood I can stand on. They don’t provide stepstools or ladders or platforms. The can has a sort of ladder built in but you need to be both tall and strong to use it effectively, because the rungs are widely spaced and of course the objective of tossing in your trash means you have to do it one-handed. The dump employees are very nice and they often come over to help me when they see me struggling… but why should they have to? Why should I be in a position where I need “help” because human beings designed something I need to use in a way that makes it very difficult for me to use it? Would a concrete back wall behind the dumpsters that’s 6 ft tall and has stairs and a ramp, where people like me, or people who use wheelchairs, could get up high enough to dispose of their recycling or trash — would that have killed them to build? I’m not a helpless person, but if you design something so that it requires actions my body can’t perform, then yes, I’ll be helpless. And if this is true for short people, it’s much, much more true for people with disabilities.

    I feel like, having a disability might create certain natural barriers to activities, but those barriers are made artificially much higher, sometimes insurmountable, by the actions of people and the systems or buildings we design. There’s no damn good reason why there are stairs up to the courthouse and stairs down to the courthouse but if you’re in a wheelchair you have to take a lift, and you can’t operate it yourself, you have to call for assistance. Why was it built that way? Why didn’t someone put in a ramp? Or a lift that works well enough that even if “lazy people” use it a lot, it won’t break, so it’s okay to let people in wheelchairs operate it themselves, you don’t have to have someone look them over to see if they deserve the lift before letting them use it? Why do menus have to be written in fancy script in eye-strain-o-vision sized fonts, and if you want large print you have to go down to the bottom of the stairs through a door blocked by a filing cabinet with a sign on it saying “BEWARE OF LEOPARD”? And then you have to beg for help — operate the lift for me, read me the menu — when if the thing was designed properly in the first place you wouldn’t need help at all!

    I despise the entire construction of disability as “oh, you poor poor people, let us give you some special help.” It’s not goddamn special help. My husband doesn’t need your pity, but he could damn well use more funding for public transportation — and honestly, so could your grandma, because she’s really not a safe driver anymore, but you and your parents and your grandparents didn’t want poor people in your neighborhood so you kept voting down the subway extension, and now you’re stuck ferrying grandma around and she’s stuck feeling like she’s helpless and dependent. My son doesn’t need your pity, but he could damn well use being permitted to operate his PDA on school grounds, and you know, if you’re failing him because he never turns in his homework, you know what might help? Going up to him and saying “Turn in your homework”, instead of expecting that like all the other middle schoolers he can follow the general directions and social cues to figure out when he’s supposed to do it. That’s not “special help” just because not so many people need it; it’s help, period. Kid comes to the teacher and says “I don’t understand the lesson”, that’s not asking for special help, but parents saying “My kid understands the lesson but he can’t remember to write down his homework, could you email it to us or write it down for him or something” is special? They’re both just *help*. And in general, having built the system in such a way that you didn’t have to do anything different in order to let people accomodate their own needs would have been a better idea than making people come to you for help in the first place.

  30. William
    August 23, 2010 at 11:24 am

    I’d also assert that there are a bunch of elements to disability which aren’t just about accessibility. One of the features of disability tends to be that it is stigmatised, and mental illnesses are most certainly stigmatised.

    This. Someone earlier made the comment that a person with a prosthetic foot wouldn’t fit Amandaw’s definition because, so long as they have their foot, they wouldn’t be denied access. The rub, of course, comes from when people see the disability.

    It isn’t a disability which limits people’s access but the context of that disability in society. Sure, being in a wheelchair might mean you’ll never be a high-jumper, but the real exclusion comes from the values attached to (or the way society structures as necessity) certain kinds of activities and behaviors. Amandaw did a great job in pointing out that there are things everyone needs help with, so needing help or being unable to do something can’t really be at the root of this thing we call “disability.” There is something deeper, there is a social element, there is the meaning we attach to certain kinds of dependency. Take the person with an artificial foot: they might be able to “pass” most of the time, but if that foot is seen (if the disability is displayed) you’ll see the social aspects of exclusion pretty quickly.

    Madness is the same. It might be invisible, but mad folks get the fear, stigma, and infantalization all the same. They might be able to hide for a little, but once someone knows, then it doesn’t matter if there are active symptoms or not. The mad person is treated differently, they are suddenly on the other side of that bright line.

  31. Kyra
    August 23, 2010 at 4:25 pm

    However, I am not convinced that the definition is really an issue of “shutting out people from full participation in society” either, though. If for example you are missing your foot but are able to walk without problems with a prosthesis, you would not be shut out from participation, but I would still classify this as a disability.

    There’s both the effect of society’s reactions, and the effects of the consequences to the person in question, to consider in this definition, I think. Prostheses can be uncomfortable, inferior in function to the body part they are meant to replace, and many of them tend to strike people’s uncanny valley, or otherwise are met with revulsion.

    Some of this, hopefully, will be better fixed by the advent of technology. I remember hearing the recent story about the cat with artificial back paws and loving that they’d managed to create a *permanent* artificial limb that connected into the existing bone structure, rather than one that one has to wear. Hopefully, as technology advances and the options available to disabled people approach the quality of life, both perceived-by-others and real-experience, that nondisabled people tend to ascribe to nondisabled existence, there will be less stigma and fear and pity projected by CNDPs and fewer/lessened negative consequences to disabled people—is Luke Skywalker disabled, after losing his hand in The Empire Strikes Back? Do people think of him as disabled? Is he disabled in the same way, or viewed the same way, as a real-life human with a missing arm and a prosthetic? Would we react differently to a person in a hover-chair like Yoda had in the prequels, than we do to a person in a wheelchair? Would a person who uses that kind of mobility aid feel differently about being in a hover chair or some other type of invention that random passerbys’ reaction is more “holy shit awesome!” than “oh, a disabled person in a wheelchair?”

    Of course, a revolution in how CNDPs react to disability would take care of much of those problems as well, although were I, say, missing an arm, I’d rather have a replacement limb attached to my bone (and preferably, wired into my nervous system) and crafted on the outside to be a replica of, say, movieverse Optimus Prime’s arm and hand, rather than an attempt to replicate human appearance that I have to put on and take off.

    The assistive devices that people choose or are presented as normal—cars, cell phones, even standard corrective eyewear—are designed, built, and marketed to be desireable. Too often, disability aids don’t—they’re needed, and that’s enough to create all the market they’re likely to have. This has a discriminatory effect and serves to Other disability and facilitate negative reactions to it.

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