So Sailor is free to feel like his becoming disabled would be a loss for him, but it would be polite (and more accurate) to defer to the experts when making that determination for society at large.

As long as we’re trotting out tortured analogies: sushi. Before Sailor tries it, he can think, “Yuck, raw fish, I’m going to hate that”. And he’s clearly the person best qualified to make that assessment — perhaps incorrectly, but anybody else who tries to make that assessment for him (no matter how much of an expert they are) is even more likely to be incorrect. But when we are trying to decide what kind of restaurant to put in the food court at the mall, we should defer to people who have actually tasted the food.

So, uh, is that reasonably close?

I’m still not convinced that we don’t have a sampling error here. Is it possible that Leora and Kay and the other folks who have posted here tend to meet more people who are happy and active and outgoing, while never meeting those whose disabilities make them unhappy and isolated? (Have you spoken with people with disabilities in other countries?) But, lacking any data of my own, I’m willing to give them the benefit of the doubt until such data shows up.

So it seems insulting to claim that I can’t imagine what it would be like to acquire a more major disability. i can imagine perfectly well: I would really, really hate it. I would also do everything I could to get past it, just as I have with a variety of other things in my life (physical and otherwise) because I would generally prefer not to spend the rest of my life in a state of despair. And I would probably succeed, because I am human.

Everyone is entitled to be happy in their own skin. Everyone is entitled to their own worldview. Outside of a thread which was specifically created to discuss these matters, I would not be having this discussion at all: I would rather that more people in the world were happy, and I have zero interest in convincing anyone else not to be happy.

But as cripchick noted, she likes to say

we enjoy so many pleasures that you will never understand or even experience.

and I feel the same way about my own life. I like who I am; I feel like it would be a loss to change that.

I can–and will–certainly attempt to change my language and presentation as to avoid insult or acrimony. There is a shitload of disability bias in the country, and I do not think it is a good thing at all. It certainly is reasonable for people to avoid insulting others, as best as they can. I find these threads helpful in pointing out the ways that I, and others like me, can inadvertently cause offense.

However, if you’re asking me to change my underlying beliefs so that I think differently, that’s a different animal. It’s one thing not to use “cut off at the knees” as an expression; it’s another thing entirely to believe that having my legs cut off at the knees would be perfectly fine if only society was more supportive.

To address what some of the other posters have written: I do understand that when one door closes, another one opens, and the second door may be just as good as or better than the first. And I know what “disability 101″ means; my issue was that Google didn’t. ;)

I absolutely agree that the inhabitant of each body gets to decide how to classify her own body. Only assholes and shrinks get to tell other people how to feel; I try not to be the former, and I don’t have the education to be the latter.

Nevertheless, it does seem like it’s useful to be able to make broad statements about certain classes of similar abilities. Forming these opinions should not be based on my perception of these abilities, but on the people’s own opinions of their own bodies. For example, I might observe that 95% of fast runners see their own ability as being good, and I could conclude that, in general, running fast is a good thing.

Similarly, when 90% of deaf people tell me that being deaf isn’t a bad thing, I have to conclude that, in general, being deaf isn’t a bad thing. And if 90% of people with disabilities tell me the same, then I must conclude the same about those disabilities.

“But”, you might say, “most of the people on this list have said that their disabilities aren’t bad things, so shouldn’t we allow that disabilities are, in general, not bad things?”

My concern is that we’ve got a sampling error here. The folks on this list who can’t hear or can’t walk have made it abundantly clear about how they feel about themselves, and how others with similar abilities feel about themselves. But people with other disabilities haven’t — specifically, those with disabilities that might traditionally be thought of as “less severe”. I’m not convinced that people with (for example) painful backs see their abilities as equal to those of people with pain-free backs. In fact, I strongly suspect the opposite — that, based on people’s own opinions of themselves, I can safely conclude that painful backs are, in general, a bad thing.

Why is this ranking of abilities useful? Well, it allows us to make society-wide decisions that end up increasing happiness. Most people (but not all) with typing-induced wrist pain generally see their injuries as a bad thing. Their individual opinions led to the generally accepted idea that typing injuries are a bad thing. As someone with wrist injuries, I want wrist injuries to be seen as a bad thing. I want people to avoid them, to educate others about how to avoid them, and to make equipment that reduces them and that accomodates those of us who already have them. And I don’t think that would happen if wrist injuries were generally seen as not being a bad, “lesser”, thing.

First thought: Yeah, that sounds annoying.

Second thought: I haven’t the slightest idea what to do about it. The time when people aren’t vulnerable to prejudice due to their gender, race, sexuality, body habitus, physical or mental abilities, etc is far away.

I don’t know about deafness, but being a probable Aspie myself, I have to say that it IS a #@&% major deficit. Humans are evolved to be social and an inability to interpret social cues correctly is a PROBLEM. Being able to assume that people will only take offense when you meant to be offensive is a neurotypical’s privilege.

That having been said, if a “cure” were found for AS, I wouldn’t take it. I’m used to my brain the way it is, I wouldn’t want to risk losing the random compensatory abilities, etc. But if there were a prosthesis that would let me read facial expression I’d certainly use it. Which I suppose means that I want to have it both ways, but who doesn’t?

i stopped reading after the first 20 comments so this is mostly geared to early conversation as i have no idea what’s been said in the last 30 comments. but just like anti-racist work and trying to challenge white privilege, it’s *generally* accepted that people are the experts on their experiences (sarcasm noted hopefully). you can say over and over you don’t want a disability and throw your perceptions onto us but you have no idea what our lives are like. thank you for assuming and making it on us to *prove* that what we’re saying is true.

we live with our bodies and if we do not love who we are (i’ll admit, this is still pretty radical), we accept that this is who we are. it’s our experience. it’s the way we see the world. just because this doesn’t fit into what you think is good or normal, why try to convince us so? i dare you to tell a Deaf person that they’re deficit because they don’t hear or a person on the autism spectrum that they’re not “normal”. we have our own standards and don’t feel a need to fit into what dominant culture tells us.

through our disabilities, we enjoy so many pleasures that you will never understand or even experience. we are a part of one of the most resilient, beautiful, diverse communities on this planet. for that alone, i wouldn’t trade this gimp body for anything in the world.

again, thank you for your assumptions though.

Leora, it must be a pain to deal with all the analogies, especially when they’re all (by definition being *analogues* and not identities) are vulnerable to just criticism, but since different people identify with different things, I think they do all help (for people who *want* to learn, who will read them constructively and not destructively).

For me personally the death analogy is helpful. My mother’s death, when I was relatively young, devastated me and in some ways still devastates me. That devastation has a tangible toll (in conjunction with the massive emotional one) - I do think that if she had survived I would be in a different place, have accomplished not only different things but more things, and be more successful (the measure-able, weigh-able things that get counted as success in our culture).
But it’s very important to me NOT to believe that over all my life is less, my horizons are fewer, etc, than if this did not happen. (different, for sure, not less). Since I can’t live out an alternate time line where my mother didn’t die, experience that life time, and fairly compare it to this one, even *I* can’t say confidently that my life would be better or richer if things had been different (or that her life would be, no matter how hard that is to wrap my mind around). If I can’t, how dare anybody else make that judgment, much less turn around and use that judgment in ways that belittle me or circumscribe my life. Which doesn’t mean I don’t want people to understand and acknowledge and validate how hard the experience of loss was and is, but, like you said so well, on my terms. It’s one thing for me to decide I don’t want to participate in an activity where there will be a lot of mothers and daughters because I think it will be emotionally hard. It’s another thing for a friend to choose not to invite me, or worse, and employer choose not trust me with some task, because they make assumptions about my emotional fragility and abilities.

I hope that’s not too self centered.

I’m think this thread will stick with me for a long time anyways, but I’m bookmarking it to make sure it does, and to be able to share it.

I think, Leora, death does make a good analogy. The death of someone we care about is a loss and it is a loss that never goes away but (most) people gradually integrate that loss into the whole core of experiences that make up their lives. The loss is always there but over time it gets attached to the massive web of connections that result from simply being alive. My father died when I was 12; I’m now 57. His death had impact on everything that followed it but everything that followed his death also had an impact on it. So, yes, that death is a part of me but so is everything else that has happened to me. I am, like everyone else, a very complicated human being and I would thoroughly resent it if someone tried to treat his death as defining who I am and then to make it worse, imply I ought to regret being who I am.

I think it probably depends entirely on the user. If you are open to change, to the idea that your belief system may be wrong, and the way your language is used reflects that and is pointed out to you by someone, then thinking about the process of changing your language use might change your belief system. However, if you are not open to change, to evaluating your beliefs and you are very close-minded, then pressure by others to change your language use is something you are just going to do for your own personal social good, and you will not let your underlying beliefs be challenged.

I still think an able-bodied person can’t “know” what their feelings are in regards to experiencing disability until they get to the other side. They can only project a hypothesis.

For my 3598th analogy on this topic (I keep hoping that each time I will get a little closer to hitting the ball out of the park. I am as frustrated as you are with all my analogies.) I figured I was going to get the “death is negative and a loss” response. So here is my new one. Keep your fingers crossed?

So I was thinking, what if you lived in America all your life and suddenly moved to, say, Bangladesh or somewhere equally as different as American culture can be. And you don’t know if you will ever get back to America. And popular social opinion has it that America is a much preferable place to live than Bangladesh. So, when you move, you go into culture shock and you grieve America. Your friends, your lifestyle, the scenery, your favorite hangout at the corner coffee shop, a hundred little things. And (with apologies) Bangladesh sucks. You are miserable. Then, slowly you discover the beauty of life in Bangladesh. The people become your friends, you find their culture refreshing. You find a new stoop to have your coffee on, with good company and beautiful scenery. You have fond memories of America, but you are enjoying where you are.

What we are talking about, then, is change. Disability is change. Either personal (as in an able-bodied person who becomes disabled) or by societal expectations (expecting that everyone can and should be able to see/hear/walk/whatever.) Change is hard. But change is not always negative, even if it first appears to be. You never will really know how you would feel about life in Bangladesh until you’ve lived there and given it a chance. And yes, some people might hate it and never like it. And some people might love it, but they would all adjust to it. But no one can say, either personally if they’ve never lived there, or assumed by our language, that life is universally worse in Bangladesh. It’s subjective, and there is no reason to assume that language that states its inferiority is accurate. And it isn’t that it is so bad for someone (whose lived there) to say words to the effect that they hate Bangladesh. That is the way they feel and it is a fact for them. But it is stupid for everyone who hasn’t even lived there to to incorporate language that implies that Bangladesh is a miserable place to live when they really don’t know what they would actually experience living there. In doing so, it is unfair to the people who make Bangladesh their home.

Now, the reason this analogy STILL doesn’t quite work is this: In most cases, moving somewhere is at least somewhat voluntary and somewhat reversable. The change may be hard to deal with and there may be grieving and adjusting involved, but you took on this change knowingly and willingly. The thing about disability is, it happens outside of your control. You don’t get to decide when or where or how you will become disabled. You don’t get the luxury, most of the time, of coming back to the other side. And we ALL hate to have change occur outside of our control. We all will face the change and decline of our bodies. If there is a universal negative to disability, this is probably it. That we don’t get to decide to make the change. So, language that reflects THAT factor would not offend me so much as language that reflects the body condition itself as being negative.

Okay, I keep saying I’m done with this thread, but dodgerdodger and others keep saying such interesting things that make me think some more. I think somewhere WAAAAY upthread I said that I’m all for open discussion if people are in it for the right reasons, which is to respectfully hash out something together. I could be mistaken on intent, but outlier’s comments did not feel that way to me. Everyone else’s have, and that not only makes for a good discussion, but helps me improve my own understanding and use of language.

I think that everyone here, at least, can agree that this sort of discrimination is unjust and inexcusable.

In arguing for the personal perception of disability as a loss, I do not mean to justify or condone anything like what you laid out in the analogious quote, including less severe, but obviously irritating varieties of that sort of discrimination such as consant expressions of sympathy: “It must be so terrible for you to be blind!”

It is unacceptable, full stop, and the abled have a responsibility to consciously avoid such prejudice against the disabled.

Yet, if you’ll allow me to continue working with your analogy, there is very little ambiguous in how we view death. Death is a change that comes to us all, both in the form of the deaths of our loved ones and in our own eventual deaths. A healthy individual must come to terms with death and accept its inevitability. He or she may even cultivate an awareness of things that could be considered positive about death, especially as informed by religious traditions. Nonetheless, death is still considered a loss, something ‘bad.’ When we speak in metaphor or simile, we use death and things associated with death to denote the negative (unless what is ‘dying’ is something we don’t like).

I am not saying that it is right for the abled to define for you your own experience of blindness or deafness by constantly expressing condolence or preventing you from accomplishing things you have no trouble doing in the name of ‘helping.’ But I am still not convinced that it is only possible to end this sort of discrimination by denying an abled speaker’s personal valuation of her sight, hearing, or other capabilities whose absence the majority has defined as ‘disability.’

I suppose some of my resistence to excising expressions like ‘blind to’ or ‘crazy’ from our language is that I am a linguist, which predisposes me to rejecting attempts to engineer language. And I think that the abled’s personal valuations of the worth of being able to see, hear, etc. are deep enough that the abstraction of their loss to something ‘bad’ is natural and at a core level of extensional meaning. Extensional meanings predicated on senses and capabilities whose absence are considered ‘disability’ aren’t always negative; take the extended uses of the verb ‘to hear,’ for example. It’s quite common crosslinguistically for ‘hear’ to mean ‘informed of something by some means, not necessarily hearing,’ to the extent that the verb tends to be blanched of meaning and a new verb has to be renewed to mean specifically ‘hear with the ears.’ These sorts of spatial and sensoral elaborations of basic meanings into extentional meanings are extremely common (including in manual languages, though in that case it is spatial meanings in particular that are elaborately extended, from what I read).

Maybe in a circumstance when the abled in general truly respected the disabled and did not view them as ‘less than’ and did not project the abled’s own evaluations of what the disabled were ‘capable of,’ in a circumstance where the culture of the abled did not condone discrimination against the disabled… in such a circumstance expressions that drew a negative association from blindness, deafness, unusual forms of movement, etc. would fall out of the language for being simply illogical. In that case, I would be seriously mistaken in my reluctance to eliminate those expressions from my speech, as it would directly reflect that I did not value the human rights of the disabled.

But I don’t believe that would happen.

My current thoughts (open to change) remain that eliminating all expressions that draw metaphorical negative associations from disability means denying the abled’s own valuations of their experience in a way that is unnatural. I think it would be a burden on language and expressiveness that is not justified by what could be gained from the elimination. I guess, fundamentally, I don’t think changing the way you speak changes the way you think. I don’t think changing words is a shortcut to changing conceptual frameworks.

But this strays into the territory of those who argue for the general idea of the Sapir-Whorf hypothesis in linguistics and those who argue against it, which is related, but off-topic. In any case, I have just expressed a rather thorough disagreement with both of youm Leora and wheelchairdancer. I am not doing so to be contrarian, but, I hope, in an honest effort to better understand your points. If the way I’ve expressed myself is failing to show that respect, I apologize and I will try to do better.

I am a professional dancer; I work for a physically integrated dance company — we mix people with a variety of mobility impairments with nondisabled dancers. There are no pictures and/or video on my site of my company — I blog anonymously. You can read about our most recent tour here. There are a variety of posts under the label dance and dance technique. My site also has links to other physically integrated companies all over the world.

I think you’re right. Many able bodied people feel uncomfortable around people with disabilities because they remind them that they are vulnerable. No one is immune from being hit by a car and paralyzed. No one is immune from an illness taking their vision. Certainly, no one is immune from aging. In some ways, the able bodied are trapped in the first stages of shock and mourning the loss when they think of people who are disabled: unless they have friends, co-workers, or family who are disabled, they probably don’t think about the issue for long enough to get over that initial reaction. And people who are scared and uncomfortable often act in unreasonable, prejudiced ways. So, if you can stand it, being an example is a potentially effective mode of activism. Even though it involves answering the same dumb questions over and over again.

BTW, if you don’t mind my asking, are you a professional dancer? I’d love to see a performance where the dancers were all in wheelchairs. I think you could do interesting things with using the chair as an extension of your body.

In my moderator voice here — I find myself wanting to toe a fairly hard line about wholescale imaginings of the experience of other groups as negative. It makes for a kind of unintentional minoritizing experience in which we chase our tails looking for something — someone — we can all agree is somehow distasteful. Which is how my post began in the first place.

To answer Sarah’s question directly: The concept of human rights, as a principle, demands that we fight for equality and justice for all humans. As an argumentative strategy, human rights is nifty — it enables us to make compelling argument without having to marginalize, minoritize or refer back to ourselves and risk getting entangled in our own prejudices and fears.

People can support the rights of a group to be treated equally and have respect, freedoms, et cetera, without being members of that group or wanting to be members of that group. All experiences are different, but relatively few people are transgender, and most people would see that experience as difficult and uncomfortable. One can personally be opposed to being transgender or even cross-dressing and generally respect other people who are transgender and want them to have equal rights and freedoms. Maybe this is just because this type of hypothetical ally is afraid of losing their own cisgender priviledge, I don’t know. Is it true that with disability, one can individually not want to lose one’s sight or hearing but still think disabled people should be respected, treated equally, etc. and have that be a legitimate view? Or does judging disabilities as losses and inferior to one’s own experience inherently create problems?

http://blobolobolob.blogspot.com/2008/05/blogging-against-disablism-day-2008.html

Also, don’t know if this will mean anything to anyone, but I will note that I was born sighted and hearing. I did not become significantly vision and hearing impaired until my teenage years, and slowly have been losing vision and hearing ever since. I still have a small amount of remaining vision and hearing, but it will go at some point as well. Of course there is loss! And grief and adjustment. Tearing down and rebuilding. Some of my vision/hearing loss happened gradually over time, and sometimes suddenly. When I was pregnant with my twins, I developed preeclampsia and bell’s palsy and had a facial hemmorage. I lost a chunk of sight then suddenly, just two weeks before my twins were born prematurely. Talk about having to be quick on the uptake! Yes, there was loss and fear and anxiety. But I think along the lines of what WCD said, loss is not equivalent to “bad”. Loss is life. I think losing vision while fighting for my life and the lives of my unborn children, well, it just didn’t seem like that big of deal. Just one of the usual bumps in the road of life we all have to take.

I don’t know how to explain this any more than I have. But I thought you might have assumed I had never been able to see or hear and thus didn’t understand the value of sight and hearing. I do. I can no longer see the lunar eclipse or spot a deer along side a forested road. But I seem to be able to enjoy a peace and tranquility that others can’t.

I think what gets me about this “less than” issue is something along the lines of this: We all have gains and losses in our lives. We lose our jobs, good friends and family die, we become disabled. But sometimes the loss is the best thing that ever happened to you (just ask dooce in relation to being fired). But it is more than every cloud has a silver lining. For example, my mother died a few years ago. And that was a loss for me and I grieved that loss, not unlike the times I have grieved for the loss of my sight. But people’s parents die. It happens to all of us. And others might say, how sad that your mother died. But after the initial grieving period, people don’t think about it much in regards to you. They do not define you by what they perceive as what they think your loss feels like. Different people are going to react to losing a parent differently. Some might find relief if their parent was abusive, some might be devastated for years, some might be sad about it and then move on. Other people allow you to do that. They don’t define every conversation, every thought, every perception and judgment about you by how they think THEY would handle your loss. Would you like it if five or ten years after your mother died, every single person you talked to said, “Gosh! I’m so sorry about the loss of your mother. It must be so hard to get through the day. Oh? You’ve moved on and now you want to talk about the job opportunity? Well, I just don’t know if we can do that! If I had lost my mother, it would be such a loss. I don’t know how I would even work and enjoy life if my mother had died. I mean, having a mother alive is so much better than having a dead one. There is no way you can say that you’ve learned and grown from the experience and you are a better person for it. I think you are wrong about being okay with the loss of your mother.” And on and on and on infinity with every single person you ever talk to for the rest of your life.

So, sure, if you lost your vision you would feel loss. And then you would get over it and move on. And you won’t think about it much anymore, and you will go back to enjoying your life. And you would wonder why you ever thought that sight was so important in the first place, even if you sometimes miss seeing the lunar eclipse. It isn’t something that is really going to have any great hinderence on your enjoyment of life.

But everywhere you go, for the rest of your life, people are going to define you by a loss that you got over long ago, and insist that you must be experiencing a “less than” life because of this one thing that really is no big deal to you. But they will INSIST! that it has to be and that it would be for them. And when you throw 22 million analogies at them in some blog thread somewhere, they will tell you that they are all illogical because your analogies about being black or a woman or whatnot don’t follow because those things are not a loss or a deficit! Even though that is the basis for the very discrimination those groups have been fighting all these years. And having no vision is a deficit! So your analogies don’t fit into my predetermined conception! You’re Wrong! And the fact that homosexuality was medicalized and managed to fight it’s way out of the medical deficiency books and into a normal deviation of the human condition in no way relates to the fact that disability and aging also are normal deviations in the human condition.

So, even if we will never agree on this point, tell me this. Why, when a whole heard of disabled people say, “Please don’t define us by what you perceive to be a loss. And please don’t use language that reflects a normal part of our human existence to be equated to “bad” or ” less than” or “deficient in. Please let us define our own bodies our way. And know that your judgment about how you would react personally if and when you experience disability is something you can only see through ablist eyes and does strongly affect the way you view and treat us, even if subconsciously. So Please stop that.” Why, when disabled people say this, even if you don’t totally understand, why don’t you just stop? Why is this notion fought so hard? Why aren’t we respected enough to be able to define disability as we see fit? We are the ones who, you know, ARE disabled. We might actually know something about it.

WCDHat: OOps. Sorry. Html blooper. Link is here, hopefully.

On Loss. This is a hard one. I won’t argue you don’t feel loss. Every one I know has been though a period of loss — there’s a transition, a grieving period that goes on perhaps in waves for who knows how long. I still feel grief, for example. But the thing is that personal loss does not equate with “bad.” And it certainly does not equate with the social and cultural badness that PWD have to face every day. In fact, it is the temporary able-bodieds’ fear of that loss that is a large contributor to the prejudice. You experience the loss and pain, but society is what tells you you know have a deficit, that you are a worthless, unemployable person. Because really, it is possible to have a rich and meaningful life.