It is as simple as that.
The implication behind accommodation through diagnosis is that the accommodation is "cheating" or providing some kind of "unfair advantage." And that means that those who need to use those alternate methods are permanently seen as lesser human beings - Children of a Lesser God - in one of my favorite descriptive phrases.On this Blogging Against Disablism Day that is what I think needs to be said, and said loudly, and said continually, because very few understand this, or want to think about this - hell - very few in the Special Education Department at my university can comprehend this issue - and even fewer are willing to try to do anything about it, and unless the link between diagnosis and accommodation is broken (which is a link between pathology and sympathy, not humans and rights), progress will never get us where we want to go.
Because, obviously, if accommodations were not "cheating," were not offering "unfair advantage," everyone would be able to use them. Just as everyone gets to use all the "assistive technologies" everybody uses: cars (are you "able" to walk to your job 15 miles from your house each day?), elevators (are you able to get to your 27th floor office via the stairs every day?), ladders (can't reach that? must be something wrong with you), power tools (what? you can't saw 50 pieces of lumber accurately by hand this morning? you a cripple or something?), even those books which mean that dumb, lazy "normal readers" don't have to remember everything.
Retard Theory
So it is time to say it, and say it every day. There is no normal. There is no normal way to read, or to write, or to listen, or to see, or to get from here to there. There are simply ways of doing things, and the ways which work best for each human individual will vary - based in human capability and human desire and human preference. And it is in individual choice that technique decision making must be based - not the diagnosis that I, or you, or we, are the victims of some pathology which infantilizes us.
This is why I argue every day for Universal Design, and this is why I recently refused accommodations from my university, when they wanted "proof of disability." "I won't," I said, "I know you'll think this is political grandstanding, and it is political grandstanding, but my opposition to this is at the core of why I am here."Forty years ago this May the students, and eventually, many of the workers of France took on the French government in legendary protests against a state ruled by too many rules and too many norms. They may have been beaten in the streets by the cops, and tear-gassed, and arrested. They may have lost the big battles, that "third Napoleon" - Charles DeGaulle - remained in power, but French society was transformed forever. As one participant in those events put it - responding to French President Sarkozy's claim that the spirit of 1968 "must be liquidated," - '“As a divorced man, Sarkozy couldn’t have been invited to dinner at the Élysée Palace, let alone be elected president of France,” Mr. Geismar said. "Both the vivid personal life and political success of Mr. Sarkozy, with foreign and Jewish roots, “are unimaginable without 1968.”' (That's not unusual, we all know that African-American US Supreme Court Justice Clarence Thomas would have voted to preserve slave owner rights if he had been there for the Dred Scott Decision, and we all know "disabled" leaders who fight hard to preserve the old system because they believe they are somehow special for overcoming it.)
Sometimes a system - even a comfortable one - is stifling, discriminating, destroying. And so even if you now get every accommodation you need, you are being crushed if diagnosis is required to get them. Because the only reason "they" are giving you those accommodations is because they think you are "sick," because they "feel sorry for you," because they know that you are not equal to "them." If they did not think those things - these solutions would not be accommodations - they would be rights and choices.
I'm not saying that you need to follow me and throw things away for a political point. I have some kind of shot at surviving "unaccommodated." I really do. And - if not - I'll just do something else. My risk may be much less than yours.
But perhaps we have to "queer" the experience around us - use "Retard Theory" whenever we can. De-normalize "them." Demand to see the doctor's note from anyone wearing eyeglasses. Ask for a note from the cardiologist every time you see someone in an elevator. Challenge anyone who prints out a copy of a digitally-supplied text - "Did your doctor say you couldn't read a computer screen?"
Make "them" uncomfortable every day. They are willing to do it to us. So it must be "fair."
- Ira Socol
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22 comments:
Congratulations on a smashing post. :-)
I think the emphasis on diagnosis or medical fact is the most divisive issue we face. But it did take me a long time to figure out - for ages, I was rather precious about my medical "legitimacy" and welcomed all those inappropriate questions about what was wrong with me.
It's something that we as disabled people have to let go of, as well as everyone else.
OK, maybe I'm alone here but I find the word 'retard' as it is used here to be completely offensive and in total disrespect for individuals with an intellectual disability who have to endure the use of this word. I don't get the need of it here - anti disablism day should be free of hateful words to describe others.
dave -
I am sorry if it offends. The idea is, of course, to offend, but to offend "them" by turning their hate words around. We have "Queer Theory" and "Crip Theory" - can't those of us deemed "stupid" by the powers that be fight back as well?
The argument is this - we cannot ever achieve equal status as humans as long as we allow their language to be used their way. As long as we play be their rules.
At least that's how I see it.
- Ira Socol
Narrator: Maybe this arguement would work if the word applied to 'you' then it would have more power. Crip theory is often used by those with physical disabilities. 'Retard' refers to a specific population, I am guessing it's a population to which you do not belong. You cannot claim use of this word - it ain't yours. As someone with Down Syndrome or William Syndrome or some other intellectual disability and see if they approve of your use of 'their' word for 'your' benefit. To me this is just name calling. I spend my days working with and being with those with intellectual disabilities, I do workshops teaching about teasing and bullying, I DAILY hear about how hurtful that word is. Their voices drown out your explanation.
Dave.
The word was made mine long ago, by teachers, by school administrators, even much more recently by university administrators. You have no right to take it away from me. And in your attempt to do that, you are buying right into those myths of diagnosis, those myths that sympathy is equality, and you are accepting their rules.
- Ira Socol
We have found that staying as "Independent" and as clear of the "system" as we possibly can leads to a situation in which the system recreates or remanufactures your identity in a form to suit its own needs and much to your detriment.
Whenever we have questioned or suggested remedies or courses of actions we have been immediately accused of being adversarial non complaint and generally nasty.
My Caregiver (Although she has been such for many years and Ok I married her after 10 years so she was then referred to as "Just his wife" and nobody asked about what qualifications she has (MANY) has even had fraud accusations levelled against her for acting on my behalf, I do have brain injuries and physical disabilities, I have learned to adapt and make changes to my life where needed yet it seems the people employed to help with rehabilitation are simply in complete denial that there is anything about me which requires assistance it all becomes quite humorous eventually after years of shear hell and terror at their hands and no I don't find Crip offensive however we do come down hard on kids who use "Retard" or "Cabbage" as they often do.
I empasised (heck wotsdaword) with and enjoyed your post Nice to know We are not alone.
"Demand to see the doctor's note from anyone wearing eyeglasses. Ask for a note from the cardiologist every time you see someone in an elevator. Challenge anyone who prints out a copy of a digitally-supplied text - "Did your doctor say you couldn't read a computer screen?"
Beautifully put - I will be passing along this wisdom in the future.
Thanks for the post.
Wow, I never thought of this in exactly this way before. Thank you.
I have a slightly different but I think related preposterous situation right now. I wear an artificial leg, and I just lost a bunch of weight because of my ongoing cancer fun, so now I need a new one. It is not enough for me to go into my prosthetist's office, show him my four-year-old leg falling off every time I lift it even though I am wearing a suspension belt as tight as possible, and have him then agree that I need a new one. No. I have to first get a prescription from a doctor of some sort to get a new leg, then it has to be run by the insurance company for "prior approval," and then my prosthetist can make me a new leg.
Likewise, I have a disabled parking permit because I had my leg cut off five years ago. It has to be renewed periodically, to make sure I am still "disabled" and of course how, and that means another form that has to be signed by a doctor, even though my leg is not expected to grow back.
And yes, I had to get an examination and note from a doctor to get my eyeglasses, too. You can't get new ones less frequently than every two years without a new prescription. It's the law.
My cancer is probably going to kill me. I am on a short-time schedule, you know? But I have to spend all kinds of time getting doctors to confirm the specific justification for me to have all these things to help me really live until I do die. This is all supposed to protect me and protect the wealth of my society from abuse.
Somehow I don't feel protected, exactly. I feel stolen from, literally robbed, of time. I can't help but feel also that it's an extension of the same dynamic you are describing.
Saraarts: It is exactly that. It is the infantalizing. "You poor thing, you can't possibly know what you need. Here, our expert will tell you." "No you silly child, it is not about what you need, but about our system."
Somehow people who clearly don't give a s*** about us think we need to care about their rules, procedures, and feelings. Of course, they have the power, and we don't, and they've made sure of that.
- Ira Socol
David Hingsburger, what about Amanda Baggs's video on YouTube On Being Considered Retarded? Are you going to tell her off for using that word, too? A woman who's been called that, who refuses to be ashamed of being viewed as one of those people, who stands by the people she went to schools and institutions and so forth with, rather than take the 'out' offered to her and distance herself from them.
I love the spirit of this post and the different way of looking at things really made me think. Thanks.
Rock and roll! :-)
The uphill battle, however, is the same one that makes it hard to defeat all the other bigotries. No one wants to think they're a bigot; they just hate blacks or gays or whatever, because that's easier than relating to them. It's easier to put a gatekeeper on the accessible materials than it is to admit that we're all really equal, that no one really has any authority to say they're 'normal,' and that the soul that lives inside of you and me is the same as the soul inside that guy who wants us to pay someone to scan and OCR the textbook for him.
Do you know about Amanda Baggs? (wiki also)
You have many cutting edge provocative ideas. However, I am saddened that you could not find a way to express yourself without using offensive vocabulary. I believe you need to know how to effectively speak without hurting others and reinforcing myths and stereotypes. Please read Kathie Snow's article on People First Language, which can be found on her Disability is Natural website at www.disabilityisnatural.com. Thank you. Anne Eason.
Anne:
Thanks for your thoughts, but I'll disagree.
And I'll up the controversy by saying that I don't believe in "people first" language. Or, let me put it this way, if that's what you want to do, fine, but I don't. I'm not a "Person with Dyslexia" - that makes me feel like I have a disease. "A patient with cancer." "A person with AIDS."
Instead I say, I'm "a dyslexic." The way you might say, "I'm English." (or whatever). It is a significant part of my identity, but it is not something I "have" in the way "people first" language suggests (it is medically diagnostic language).
That said, "retard" has been very offensive to me in the past. My way of fighting that is to take the word back. But you can, of course, feel free to disagree.
- Ira Socol
I think your use of the word "retard" is like some of the younger black people calling one another "nigger" or "nigga", taking back the word as their own. I disagree with both uses. What I see happening to the "n" word is that the younger generation is using the word openly because the younger black kids are calling one another "nigga" openly. I am sure it was not their intent for "non blacks" to use the word, however, they don't have that kind of control. what you are actually doing is perpetuating use of the word and presenting it as being OK for others to call you that since you are calling yourself "retard". It is not OK. It has been and continues to be a long hard battle to stop the use of this word. The people that want it stopped are the people who have been labeled and teased, the people who love them and the people who know it is wrong to talk to people like that. I understand where you are coming from, but what you are actually doing is perpetuating the use of the word toward the very people you want to stop labeling. I think that experience, which will come with time, will change your thinking. We are people that care about people. I agree with you that there is no normal, however, we can't take society's negative words and make them our own. Society isn't going to see that, they just see that we are calling ourselves "retards" and so they can call us retards too. You aren't changing society's definition and therein lies the problem.
I am signing anon only because I can't get my password right...
anon:
Maybe. But maybe I am using it the way gay rights groups use "Queer" or disability (mobility) rights groups use "Crip." After all, I am deliberately referencing "Queer Theory" and "Crip Theory" in my use of the term "Retard Theory."
I think this IS all a matter of experience. I spent years and years encouraging politically correct speech only to see the use of "retard" skyrocket as a generalized slur. I spent years and years trying to get those self-perceived "normal" folks to see this as anything but a socially-constructed diagnosis, only to see those who claim to "speak for the disabled" clutch those diagnoses to their breasts ever more tightly. So, perhaps, unlike you, my experience suggests that the system will not reform itself.
Thus, the question becomes how to challenge, how to threaten, how to de-normalize those who see themselves as "normal." And in my mind - after what looks to me like a lifetime of experiences - that requires taking the confrontational tack, and starting to build our own identities for ourselves.
- Ira Socol
This is an excellent post! I'm glad I found out about BAAD, I'm learning so much.
From age 9 on, I've had people tell me "you should get help for that", when I felt that I was perfectly fine (I have idiopathic Epilepsy - NOT controlled). Now that I actually do need help, I'm told "you don't look like there's anything wrong with you - prove it." I'm exhausted.
I've defiantly heard retard used frequently and viciously. However, I think that is all the more reason for us to embrace it and take it back. We all need to step up and say, "I am retarded."
Susan
She just loves the "I am Spartacus" line
The strength of this discussion is clearly an indication of how good the original article was.
It's not a discussion with any clear cut answers which makes it all the more fascinating.
I was initially a proponent of People First language and I still do believe that it is well intended.
I'm not convinced it is the way to go however. It is interesting to note that People First is so politically correct in the US and yet so polarizing among the same community in the UK.
I'm not sure that I understand exactly why that should be, except for the US's reliance upon the medical model and it's obsession with curing people's perceived deficits.
Cheers
Ian
I just found your writing when this post came up on my google search:
[intellectual disability retarded rights "i am retarded"]
I was looking for people who have written about reclaiming the term retarded. Great piece here. I just bought the e-edition of your book, The Drool Room, at Lulu.com.
Excellent post and very interesting disscussion.
While I agree that requiring medical documentation is 'infantilizing' and does indicate that the person being accomodated is being allowed to 'cheat' somehow, I believe that it all comes down to money. While certainly most accomodations cost little to no money, some do cost money, and some cost a great deal of money. So requiring medical documentation is a way of trying to save some cash. Nevermind that those who require support in organization etc may never get documentation simply because they require support making and keeping drs appts, picking up, filling out, and delivering paperwork.
In Ontario (canada) in order to get the government disability benefit you have to have medical documentation and fill out a bunch of forms. and you have to do this every year or every other year. The government simply won't take it for granted that your autism, down syndrome, cerebral palsy, etc might not just go away someday like a broken leg.
I do agree that there is also no normal. We all have something that is different and unique about each and every one of us. I am from Dr Strange's EDM310 class and I am majoring in Special Education. I agree with everyone that has said they are highly offended with the name calling, "retard". The youngest of the three boys I babysit has Autism and by no means is he a "retard". Just like you said there is no normal. He had many different and special qualities just like each and everyone of us.
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