Pity, Exploitation, and the Medical Model of...Everything.
Labor Day weekend. Swimming pools, barbeques, parades, a day off work...and...
That infernal telethon. See for more about said infernal telethon. Jerry Lewis, yeah it sounds good to say you're helping a charity, but your dirty mouth says more. Anyway.
What does MDA have to do with anything else I talk about? Well. Let's see. There's:
a) Pity. MDA uses exclusively children to get pity to keep those donations rolling in. Someone living a full life, even if it isn't your standard life, isn't going to make the big bucks. In the autism world, we have parents taught to pity themselves for having a child who isn't typical, to the point of wishing they hadn't had that child or spending hundreds of thousands of dollars trying to make a dream child exist. Those same kids used in autism ads are shown at bad times of day, followed with cameras till they do something "horrifying", and probably grow up to look a WHOLE lot different than they did as children. Universally, they develop. So do the kids with muscular dystrophy, Rett syndrome, mitochondrial diseases (and yes, I know a lot of these thngs are progressive but there are still adaptations to be made). And most of the time they grow into ADULTS. Not children. Guess what else? We are neither demons nor angels personified. We are people. We are not here just to be fundraising tools, we are here to live lives.
b) Exploitation. Yeah. Those kids. Raising kids to believe that who they are is less than satisfactory really sucks, people. In fact, it'd be abuse if they were typical children. Then putting them on TV to talk about how their lives are sooooo miserable because they're defective? Or videoing them or interviewing their families to talk about how their condition makes their lives soooo impossible? HELLO! We wouldn't do that for race, religion, country of origin. WHY are we doing this for conditions? And of course there is the exploitation of families who just don't know better looking for a cure, because they are lead to believe that being anything but Standard Issue isn't acceptable? Damn. That's a lot of exploitation, all from the medical model of differences.
It's also interesting to note that children are the only ones they ever ask about things, and parents. It is easier to get children to agree that they are sick and damaged I suppose. Plus adults just aren't as cute on the posters for the most part. It isn't like we die off in vast swathes for most conditions (MD isn't usually deadly, mito can be but often isn't IDed till adulthood even, autism isn't deadly unless your parents off you, Rett only has a slightly increased risk of death, et cetera et cetera...). Adults just don't bring in the money.
Why not make disability something that socially IS instead? We're all going to be disabled someday unless we are struck by a truck or lightening or a flying gymnast who was previously invisible (oh wait. my foot won't let me do that anymore. THAT risk is taken care of...). Making issues medical that aren't makes people feel defective when they aren't-they're just different. It also takes financial advantage of vulnerable populations, and takes up resources from actual medical issues.
Treat medical problems medically. Treat social issues socially. Being different isn't medical. It really is that simple.
That infernal telethon. See for more about said infernal telethon. Jerry Lewis, yeah it sounds good to say you're helping a charity, but your dirty mouth says more. Anyway.
What does MDA have to do with anything else I talk about? Well. Let's see. There's:
a) Pity. MDA uses exclusively children to get pity to keep those donations rolling in. Someone living a full life, even if it isn't your standard life, isn't going to make the big bucks. In the autism world, we have parents taught to pity themselves for having a child who isn't typical, to the point of wishing they hadn't had that child or spending hundreds of thousands of dollars trying to make a dream child exist. Those same kids used in autism ads are shown at bad times of day, followed with cameras till they do something "horrifying", and probably grow up to look a WHOLE lot different than they did as children. Universally, they develop. So do the kids with muscular dystrophy, Rett syndrome, mitochondrial diseases (and yes, I know a lot of these thngs are progressive but there are still adaptations to be made). And most of the time they grow into ADULTS. Not children. Guess what else? We are neither demons nor angels personified. We are people. We are not here just to be fundraising tools, we are here to live lives.
b) Exploitation. Yeah. Those kids. Raising kids to believe that who they are is less than satisfactory really sucks, people. In fact, it'd be abuse if they were typical children. Then putting them on TV to talk about how their lives are sooooo miserable because they're defective? Or videoing them or interviewing their families to talk about how their condition makes their lives soooo impossible? HELLO! We wouldn't do that for race, religion, country of origin. WHY are we doing this for conditions? And of course there is the exploitation of families who just don't know better looking for a cure, because they are lead to believe that being anything but Standard Issue isn't acceptable? Damn. That's a lot of exploitation, all from the medical model of differences.
It's also interesting to note that children are the only ones they ever ask about things, and parents. It is easier to get children to agree that they are sick and damaged I suppose. Plus adults just aren't as cute on the posters for the most part. It isn't like we die off in vast swathes for most conditions (MD isn't usually deadly, mito can be but often isn't IDed till adulthood even, autism isn't deadly unless your parents off you, Rett only has a slightly increased risk of death, et cetera et cetera...). Adults just don't bring in the money.
Why not make disability something that socially IS instead? We're all going to be disabled someday unless we are struck by a truck or lightening or a flying gymnast who was previously invisible (oh wait. my foot won't let me do that anymore. THAT risk is taken care of...). Making issues medical that aren't makes people feel defective when they aren't-they're just different. It also takes financial advantage of vulnerable populations, and takes up resources from actual medical issues.
Treat medical problems medically. Treat social issues socially. Being different isn't medical. It really is that simple.
posted by Kassiane at 10:06 PM
11 Comments:
What do you think of Tony Attwood's take on helping autistic kids? I noticed your link to his book on your other site. I finished reading the book a couple weeks ago.
I was just diagnosed recently with Asperger Syndrome (or High-Function Autism, depending on which pshrink you're talking to). I'm 27, so I've learned how to deal with most of the related difficulties... but I don't think I would have learned if my parents had followed Attwood's social treatment.
I'm all for trying to understand and help autistic folks, but he goes overboard... talking like the key is for every teacher/employer/whatever to be educated and asked to change the school/work/whatever environment to accomodate the autistic person. It doesn't help the kids to spoil them. They need to learn how to deal with environments and situations that are uncomfortable, just like everybody else does. And it's a kind of BS victimization, like the stuff you're talking about, to treat autistic people like they're incapable of adjusting and sucking up their discomfort now and then.
I don't think he's completely off the mark, but I do think he's talking about autistic folks like we're babies who shouldn't have to grow up if we don't want to. Autistic people should be expected to make sacrifices for others, just like everyone else.
P.S. If you're wondering where the hell this person with the long-winded posts came from, I was just looking online for other autistic folks. I might be used to the symptoms, but I'm just getting used to putting it altogether as autism. Anyway, I hope you don't mind.
Thanks for this great post.
I did a blog on the telethon as well at http://reunifygally.wordpress.com/2007/09/03/why-deaf-people-should-boycott-jerrys-telethon/
If you choose to come look at my telethon post then I hope you'll also stay and look around at some of the posts I've done about the ADA Restoration Act of 2007, which I think is another subject that people with disabilities should be up in arms about. And BLOGGING ABOUT!
To Aaron: How, exactly, is it "spoiling" a child to remove from their environment (such as over-simulatory noises) things that are tantamont to torture for them? If you think having a disability not be appropriately accommodated merely means being a little "uncomfortable" then you really haven't gotten it at all. As a deaf person, I have a right to a sign language interpreter in certain contexts. Not having one does not mean merely being "uncomfortable" with the lack of communication it can sometimes mean being cut off from information vital to my self-protection, health, and safety. The accommodations that Autistic children and adults need are different, but the NEED for them is similar.
There can be difference in how those accomodations affect other people. A teacher's use of sign language for a deaf student doesn't greatly alter the other students' lessons, just as the recordings and verbal drawing of visuals for a blind classmate of mine didn't distract greatly from our lessons. Some level of accomodation can be reasonably expected of others, but sometimes people have unreasonable expectations.
We must learn to handle situations in which accomodation isn't reasonable or preparations can't be made. As a deaf person, you're surely accustomed to going many places and doing many things with people who don't know sign language. If your family and friends had been over-protective, always accompanying you and shielding you from distressing situations, you wouldn't have learned how to handle the stress and adjust your actions to such trying environments. Most deaf folks I've known were fairly good at lip-reading, a talent they developed only because they can't always be accomodated with sign language.
Likewise, autistic children need to learn that the world's not always fair and not always about them. They need to learn how to deal with situations that they'll likely run into, no matter how painful those experiences are. Autistic people need to learn how to improvise and live around people who know nothing about autism, to participate in environments that are out-right painful. Like all people, they need to learn when to just be tough and accomodate others instead.
Hi Aaron. I'm an "NT with spectrum leanings" married to a man with Asperger's and we have a daughter with same. My husband has never been diagnosed, and probably shares your opinion that it forced him to "learn to deal". And yes, he's become an extremely functional member of society. But at what cost? I know there are certain accommodations he could have had as a child (basic understanding if nothing else) that he'd willingly trade some of this "acting normal" for.
The role of school accommodations in particular is not to "spoil" the child (gag), but to give them a scaffold without which they would have NO access to mainstream education. With the ultimate goal of the student no longer needing them. But if everything is done correctly (an admittedly rare turn of events) and the child still can't interact with the world like a neurotypical, what do you do? Let 'em sink or swim, like you had to do? Some people don't learn well that way.
And while I agree there are limits to how much a regular classroom teacher should be expected to do for any individual student, I set those limits MUCH higher when it comes to expectations for a school DISTRICT. Yes, sometimes our expectations are unreasonable. But more often we're TOLD they are unreasonable, when in fact they aren't, they're just .... different. And you know how uncomfortable THAT makes people! lol
Great questions, by the way. I think along similar lines at times; I think we all should. If you want to pop over to the Rett Devil's message boards (see "Least Restrictive Environment" at http://www.rettdevil.org/ - I think you have to register to see the boards), that would be a great place to explore it further. Meanwhile: sorry to interrupt your [great] telethon rant, Kassiane! Keep up the good work.
K,
Righton, JL is one of the oldest versions of Autism Squeaks, searching for a cure for thousands of years they will be (ok, maybe not thousands, but you get my point? no?)
Aa,
Try to ease up a bit?
Accommodations have nothing to do with spoiling a person. Fair isn't "everyone gets the same", it is "everyone gets what xe needs". I need earplugs in class, at minimum. My NT classmates sure didn't...they can't hear the lights buzz. I wore sunglasses to school too, because of flicker and glare. Sensory issues, processing issues, have nothing to do with spoiled or anything. Accommodations LEVEL THE FIELD. They do NOT make life EASIER for me than for, say, Gretl up there.
I'm big on giving people what they need. Everyone gets all hung up on behavior and then it turns out they were causing it.
Yes we could all do with a little perspective taking from time to time. I certainly need reminding.
Best wishes
I suppose by now it's too late to really follow up, but just in case:
Aaron, you say that sign language interpreters don't really get in the way of other people. But, funnily enough, there have been cases where deaf people WERE denied interpreters (or when teachers etc tried to refuse to allow interpreters into the classroom) PRECISELY due to the claim that sign language interpreters would be distracting to the other students. Some teachers have tried to claim that students would spend all their time watching the fascinating hand movements of the interpreter or something instead of paying attention to the teacher.
Sign language interpreters are increasingly accepted today because people eventually discovered to their great surprise that people really do become accustomed to having them around pretty easily once they give it a try. The accommodations required by some autistic people are really pretty much on the same plane: some might INITIALLY seem "distracting," but often that's only because they're DIFFERENT and therefore novel. If you were around it all the time (for example, allowing an autistic person to flap their hands and rock) then eventually you'd become inured to it in pretty much the same way you have evidently become inured to seeing an interpreter in the room.
Re, lipreading: as it happens, I do lipread pretty well. For this reason, I don't usually bother with sign language interpreters for most one-on-one interactions -- for example, a quick meeting with my boss to clarify a question about my assignment. But I've known some intelligent, competent deaf people who happen to have no lipreading skills. And, no, not for lack of trying, or exposure, or training, or because they were "overprotected" or any of the rest. In fact, some of them were prohibited from using sign language and forced to ONLY speak and lipread when growing up (even though they couldn't do either). Lipreading is a pretty darn tricky skill, and so is speaking. I'm assisted a great deal by the fact that I can hear somewhat (not well enough for the phone, but enough to supplement what I see on the lips), and it doesn't hurt that I have a good vocabulary. And I suppose I'm a good "guesser" (lipreading is really a guessing game). But not all deaf people have those advantages (though they may have plenty of other advantages that I don't, such as being more extroverted than I am, or better at gesturing or whatever.)
Two people can have the same disability and diagnostic label and still have dramatically different needs. What do we do then with the people who really CAN'T "fake it" well enough to "pass" for normality? Continue forcing them to not flap or rock, or to endure the sensory equivalent of torture (for autistic people) or continue forcing them to lipread when they just point blank cannot do it? Or do we just accept that Betty needs a sign language interpreter in certain interactions even though Andrea may be able to get along just fine without one in the same context? Or that Dan still needs to wear ear plugs and sun glasses and needs a lot more "down time" than Bobby, even though they're both "autistic"?
Yes, you don't want to overprotect or coddle. But I don't think it's overprotecting or coddling to recognize that different people DO have dramatically different tolerance levels and dramatically different coping skills in the same contexts. Even the SAME person's tolerance level can fluctuate widely from one day to the next. (For example, I cannot speak or lipread AT ALL under extreme emotional or other stress, though I can still certainly read and write or understand and use sign language.)
Hallo,
I love reading the information that you've written. It's helpful for anybody needing to know what is going on in the disability community.
Thank-you for taking the time to share your personal take on everything you've encountered as well. As a fellow person with a disability, I enjoy learning more about every different type of disability that I am able.
Please, please continue to share issues. I'll bookmark your page so that I may find it easier the next time around.
Post Script ~ I must say how I linked to your page: I was reading about the murder of a child. Katherine McCarron didn't even make the news where I live. If I hadn't been doing disability right's research I would never have even heard of the little girl.
It is a tragedy. Not only was a child murdered by her mother, but it gained no national media attention, and there are some who believe that it was "jusifiable".
There is no justifiable reason for murder --- period! I cannot stomach those people who believe murder, or butchery is acceptable.
Like that child was mutilated in Washington State: People talked about how it was "medically" required for her parents to care for her. It's sick the world we live in; when such actions can be "jusified" by thoughtless people.
Why is it that everything has to be 10 times harder for us? Why is this considered OK, even good to make us work at maximum effort just to get through an ordinary day? Even if we 'can manage' or 'can learn to manage' if denied accomodations, quality of life matters for something too. And neurotypicals get plenty of accomodations, such as places to eat that serve food that they like, clothes for sale at decent prices that feel reasonably comfortable, etc. It's not like we're getting accomodations and they aren't. It's that the whole system is designed for them, and we're just asking for little tweaks here and there to help us manage in it.
Hi -- I wanted to make sure you knew about the latest that is happening with Jerry and his, yes, humanitarian award:
Jerry Lewis, the man who runs the annual Telethon to raise money for people with muscular dystrophy in the US is about to receive a humanitarian award. Many people in the disability community is protesting this award because they feel that Jerry perpetuates and entrenches negative, harmful stereotypes toward people with disabilities. More about the petition campaign at: http://www.petitiononline.com/jlno2009/petition.html
There is also a Facebook group at http://www.facebook.com/group.php?gid=40538392681
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