Disability Culture Wrap-Up

I had a few email questions regarding my post on disability culture that I have waited way too long to answer. So I'm going to try to hit them now:

Cecily writes:

I'm curious, if you have the time/inclination, about your take on the whole "Deafness is a culture, not a disability" thing.  I'm doing a research project on this, and the ramifications of culture/disability labels for legal protections.  I am fascinated by the number of people on both sides of this "debate" who make entirely one-sided arguments.  Some people (Harlan Lane, loudly, for one) insist that deafness is not a disability at all and that Deaf people are fundamentally unlike people who say they have disabilities.  Others (Bonnie Poitras Tucker, e.g.) say that if deaf people want to talk about "culture" they should give up all claims to ADA-mandated access.

The Deaf as Culture thing makes sense to me. But I do wish they wouldn't totally separate themselves from the rest of disability community (those that do.) I think that combining our efforts could have advantages for both/all groups. When they separate themselves that much from us, I think that they show their own prejudices against disability. I think that arguably, many other people with blindness, spinal cord injury etc, are also of the mind that they don't have a deficit. I think they do really want to separate themselves from the disabled people who are all about "the cure." And to some extent, so do we. When they say they don't have a disability, they are objecting to the "lack of hearing is a deficit" construct of the definition of disability. To them, lack of hearing is a characteristic that has allowed them to develop their rich culture, so it is a positive characteristic at that.

Deaf people are sometimes very literal in regards to how they perceive the English/written word. I think this has something to do with their lack of enthusiasm for the word "disability." The word "Disability" is a label that we've all just sort of reluctantly taken on as our label. It isn't our word, its the mainstream word that we've sort of acquiesced to using in order to group ourselves for advocacy. It replaced physically challenged, which replaced handicapped, which replaced cripple, etc. It is not unlike "colored," "black", "African-American." The words keep changing, even when the connotations will eventually catch up to the new word. In fact, the words keep changing because the negative attitudes make the old words derogatory. The labels, "idiot," "imbecile," and "moron," for example, are just Latin-derived medical terms for cognitive disabilities. Because people with these disabilities were so hated and feared and treated so poorly, these words became insults. The same thing happened to the word, "retarded," which simply means slow. Someday, I highly suspect that the word, "disabled" will be a no-no word and something else will replace it. The Deaf are just ahead of the game here. The literal meaning of disabled means "not able", of course. It implies deficit, something negative, the focus on what is not there rather than what is. Deaf people see what Deafness has given them, so the literal meaning of disability makes no sense. They don't identify with it or with the culture of deficit that we all sort of put up with.

It is important to remember, when they say they aren't disabled, they aren't saying that they aren't deaf. No one is saying that they can hear. So this business about how the ADA shouldn't apply to them if they don't identify as disabled is kind of bullshit. It is a complete misunderstanding of the purpose of the ADA. The ADA is a civil rights law, not a benefits law. What that means is that the ADA is supposed to protect people who may be discriminated against based on physical differences. Deaf people aren't saying that they aren't physically different, they are saying that their physical difference does not disable them. The ADA is NOT some kind of benefit, such as Social Security Disability, that one must qualify for by being labeled "disabled". At least it isn't supposed to be, although the supremes often interpret it that way. This is why there is the clause in the ADA that says if you have a disability or are REGARDED AS HAVING a disability, you are protected by these civil rights mandates. Deaf people aren't required to consider themselves disabled to deserve equal rights and access under the law. They deserve civil rights inherently. The law recognizes that other people may discriminate against them and not provide equal access to them because other people regard them as having a disability.

I've used this example before, but say you considered yourself to be Caucasian, but one of your grandparents is black. Say an employer discriminated against you because he knew your grandmother was black and thus considered you black and treated you poorly because of it. This is still discrimination, no matter what you consider yourself to be racially.

A more closely related example would be something like if there was a woman who is five feet tall works in a warehouse stocking shelves. She does the same work as her taller coworkers, only she uses stepladders to reach the high shelves. She does not consider herself to be disabled, merely shorter than the shelving she has to stock. Then her employer decides to fire her because they only want to employ people who can reach the top shelves without having to use stepladders. It is a liability issue for them. They fire anyone under 6 feet tall. Not fair, right? But she is still not disabled. She is, however, being unfairly discriminated against because of a physical difference that, with appropriate accommodations (the ladder) allows her to be otherwise qualified for the job. The intent of the ADA was to protect people like her as well as more traditionally disabled folks, even if she does not consider herself to be disabled. To give her equal opportunities, not special benefits. The raging battle that has been going on in the courts for the last 17 years has been that corporations want to shave the ADA into a benefits law for a very, very few people that they consider to qualify as truly disabled, and then they want to shave that number down to those they think are "otherwise qualified" by writing ridiculously biased job discriptions. (i.e. Bank employees are required to be able to carry 100 pounds, even though they might only actually do this once a year.) Its a crock that effectively waters it down to protect as very few people as possible and give business the right to continue to discriminate. They want the right to not hire 5 feet tall women who may need a stepladder. Or to have to deal with workman's comp issues for factory workers who get overuse injuries such as carpel tunnel. Its cheaper to just fire injured employees.

The ADA is supposed to protect everyone. You, me, anyone who may find themselves in need of accommodations and access. Anyone who has a civil rights issue regarding their physical differences. It is not a "special" benefit for "special" people as labeled by society. So whether Deaf people call themselves disabled or not has absolutely nothing to do with their right to equal access and civil rights under the law. They may not see themselves as disabled but still know, for example, that they deserve to understand what their doctor is telling them, and thus have the right to an interpreter. Having access to our own medical information is a right no matter how that information is provided for us. Interpreters aren't a special benefit, they are a means to access to the same information that is typically provided verbally. We are all supposed to get these kinds of rights no matter what we call ourselves, no?

Mark writes:

You wrote how well-adjusted that kid is on the Little People show. To me, it seems like he has a huge attitude problem about being a dwarf. He is always moody and talking about how it sucks. The parents don't really do that. I think he is going to have problems as an adult.

Okay, so I assume Mark is talking about Zachary, the teenage son who is a little person on the show, Little People, Big World. I never really had this reaction to Zach. I don't see this at all. Keeping in mind that I don't know this kid or this family and this is all conjecture, this is what I think about Mark's comments.

1. This is a reality show. All reality show participants are the victims of editing. If you took every grouchy thing I ever said about being blind over six months and shoved it into two hours, I'd definitely look like I had an attitude problem.
2. He is a teenager. Teen angst is appropriate and normal.
3. He is a teenager. Specifically, what I mean here is that kids born with disabilities who become teenagers or young adults with disabilities often go through a 'thing.' It is the same identity crisis that all teenagers go through, yet magnified times ten. Why? Because everyone likes disabled kids. They are cute and you can talk down to them comfortably because they are kids and they are the subject of all those wonderful charities and they give you all warm fuzzy feelings inside. Also, their physical differences are often not so different than their peers when they are young. They are also often a lot easier to accommodate when they are little. When they become teenagers, suddenly, the world changes. They are starting to go on way different paths than their peers. They are not thought of as cute, warm and fuzzy disabled kids anymore. They start to face the full onslaught of disability discrimination. They don't make people feel warm and fuzzy anymore, they make people feel uncomfortable. They didn't do anything wrong, it is just a way that our society accepts disabled kids way easier than it accepts adults. This realization can be a lot to handle.
4. Non-disabled people really, really have a hard-time dealing with anything a disabled person might say about disability discrimination. Many times, they just can't take it. As an adult with a disability, you have to learn when to keep your mouth shut and when you need to open it about discrimination. You will face discrimination, major and very minor, every single time you set foot outside your door. You have to learn to let a lot go and pick your battles carefully. You have to learn when to eat someone's stupid, insecure shit so that you aren't excluded from an opportunity like a job or something. Zach's parents obviously have a lot more practice at this than Zach does. He'll learn, unfortunately, that sometimes he has to keep his mouth shut and smile like everything is hunky dory. I, actually, find some of the stuff he says refreshing. I'm glad he has the guts to tell it like it is honestly. That is the good thing about him being a teenager.
5. He's a teenager.

Julie writes:

My brother is disabled and he has a lot of disabled friends and I see how this is a culture. But when he gets together with his disabled friends, all they do is make fun of able-bodied people. Right in front of me, they talk about how we are all wimps and can't handle anything and imitate the way we deal with all of our supposedly inconsequential little problems. It really gets me. Is this a part of this culture? Am I just supposed to laugh along with it? What do you think I should do?

I suppose I should be totally mature and say, "oh, that is awful! He shouldn't do that! That's just as prejudiced as what we face! Reverse discrimination!" And I guess that is true. But I have to admit to kind of smirking a bit and laughing about this as well.

Yes, I think it is probably a part of the culture. I see it a lot. I suppose it isn't right and is unfair. On the other hand, I think it is a necessary evil. I think that when you hear all day from everyone about what they think you can't do and how your life must suck, and then you see some of the, yes, pansy-ass ways they react to little problems, it is kind of hilarious and full of joke-worthy material. I think it builds community and pride.

However, I think we need to keep it to just a bit of a humorous hobby and not a way of life. Get too into that line of thinking and we can build a wedge between us and some potential nondisabled allies. Or just take it too far and end up really hurting someone. D and I got into a really bad, bad habit of making fun of a couple that were sort of close to us. It became kind of a hilarious pastime. This couple, although well-meaning, were just the most able-bodied bumbling idiots who didn't know it that you ever saw. Just whining and sacrificing every opportunity they had that we could never dream of having. They constantly looked upon us as the unfortunate ones, but we were handling our stuff just fine and they just couldn't handle the littlest of their shit with any sort of competence. It was like watching chickens with their heads cut off. But we were horrible and we have no excuse. It got so bad, that we were sort of even designing excuses to see them in situations where we could amuse ourselves by being entertained by their ineptitude (made funnier by their total patronizing of us as if we were the less competent ones). It really became a terrible habit. When we had the kids, we really decided that we had to stop it. Not only were we risking that someday our kids were going to repeat to them some god-awful thing we said about them, but we were modeling disrespect. And we have nondisabled children, we were basically making fun of an aspect of them. And as weird as this may sound, we didn't want them to feel bad or inferior for being nondisabled. So, and it took some diligent work, we cut it out. It was about as hard as trying to stop swearing all the time, which I am also working on. But I think we kicked that habit for good, at least unless we are totally alone with each other.

That doesn't mean you have to put up with it if it is hurtful to you. You can talk to him about it, or you can join in and make fun of him back if you have that kind of relationship. Or I guess you could leave the room. One thing to consider, he may feel comfortable joking around like this in front of you because he thinks of you as one of the group, one who "gets it." And one who has some of the perspective he sees lacking in other nondisabled people. He may be sort of complimenting you as an ally or honorary member of the community. But I'd talk to him about it. You have the right to have your feelings be heard, no matter what.

Okay, so I think that about wraps the raging questions from my inbox. If I missed yours, or if you have a raging question you think I might know the answer to ( or just act like I do) feel free to let me know. I'll answer it eventually, I'm sure.

Comments

[Cecily Whitworth]

Quick clarifying comment about the "No ADA protection" argument, as it relates to deafness/Deaf culture: The specific argument that I'm citing here was made by a deaf lawyer, saying that it is all very well for deaf people to claim that they are a culture, but they also have to take responsibility for adapting to society. Her view was that the ADA would only be required to provide interpreters, etc, as long as the deaf people in question were doing everything they could to fit in. Which, in the view of this lawyer, includes cochlear implants. She basically claims that in order to qualify for ADA protection, people have to be actively seeking and making use of accomodations, so Deaf people who refuse implants and insist on ASL would just be a linguistic minority, not disabled.

It is a very weird argument. But people say some weird things on this topic. I, personally, think it makes no sense to say anything other than d/Deafness is both a culture and a disability, and why can't we all stop being so mean?

But I was curious about your reaction as a non-big-D-Deaf disabled person, to all the hoopla. Thanks!

[Lisa]

Huh. Cecily. Interesting.

I agree with you on the "why can't we all just stop being so mean?" thing. But I would strongly disagree about the "Get cochlear implants and assimilate if you aren't disabled" argument.

First of all, because getting cochlear implants is a big deal. It isn't a cure, it is putting something into your brain that destroys your residual hearing and requires a load of work to adapt with differing levels of success. This is a bodily integrity issue for me. You can't be required to undergo medical procedures in order to be accepted by society as equal and worthy of accomodations. I mean, God Damn!

And second, even if cochlear implants were a peice of cake that really did cure you of deafness, that is like saying, Okay black people...we'll treat you equally to everyone else and give you protection under the law but you have to bleach your skin white, relax and dye your hair, and loose any cultural accent or quirks you may carry. I mean, there are black people who don't support affirmative action, but no one is running around saying you gotta go be white. Again, DAMN!

I think disabled people, deaf or Deaf or whatever, do need to take responsibility to do what everyone else is expected to be responsible for. Show up on time, work hard, get the training needed for a given field, work to communicate effectively with everyone, etc. I don't think personal responsibility requires them not to be or act deaf. To me, that's crazy.

[Cecily Whitworth]

The cochlear implant/assimilation argument is not MY argument- you're not disagreeing with me. I am deaf, and have no intention of getting an implant, and I fully expect our society to continue to provide me with full access anyway.

The article (if you're interested) is The ADA and Deaf Culture: Contrasting Precepts, Conflicting Results, by Bonnie Poitras Tucker, in the Annals of the American Academy of Political and Social Science, Vol. 549, The Americans with Disabilities Act: Social Contract or Special Privilege? (Jan., 1997), pp. 24-36

[Lisa]

Cecily,

Yeah, I totally got that it wasn't your argument. I just thought it was a bit crazy, but something that my sister might say, so I thought I would clarify my position on it.

Thanks for the ref. article. I might try to look that up.

And, yeah, if I ever decide to get cochlear implants it will be at the last possible second. When ALL my hearing and possibly my vision is gone. Hopefully by then, they will recieve more than 22 frequencies (or whatever its up to now.)

[Cecily Whitworth]

"crazy, but something my sister might say"... that is a great sentence.