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Random reblog, with comments

May 17, 2012 1 comment

This is brilliant, so I’m reblogging it. It applies to disability as well as, despite not mentioning it explicitly. Also, the comments were really interesting, and not as horrific as usual (thanks, in large part, to JS’s willingness to moderate them and occasionally hit people with the Mallet of Doom when they overstepped their bounds.)

I tried to read all the comments, really I did. I got to about dinnertime on May 15. By the time I got back, comments had been shut off. Sadface. So, because my responses are all running around my head like overcaffeinated hamsters: I want to respond to some of the commenters here.

1) “Tom G,” I’m not sure why you were even allowed to comment. I don’t know if you were trolling or if anyone can really be in that dire need of an encephaloendoproctectomy (for those of you who don’t speak Medical, that roughly translates as “operation to remove one’s head from one’s posterior”). Actually, sadly, I do know… There are actually SWCMs in this country who think /they/ have it rough simply by virtue of being SWCMs. There isn’t enough facepalm out there. “Someguy” also wins a douche award.

2) To all the SWM who said, essentially, in a range of ways: “Yes, I agree it’s unfair that I got the breaks, but stop hating on me for it/ what am I supposed to do about it/ how come you’re all blaming me?” and in some cases “but I even /tried/ to help the less fortunate and got crapped on for my trouble” (htom, Ian I, shackledtodesk, Dismissed Minority Truth, Gareth S, Joshua M, Jdack, cammanwordsmith, Matt, John F, someguy, prof.pedant)

— Actually bother to read the answers people gave. There are some damn good ones. Accept the fact that someone might know more about it than you. Learn from them.

— Ian I, in particular, you seem stuck in “yesbut” mode. You and people you knew had some lousy experiences with this kind of thing. Yes, that sucked. No, it wasn’t fair. I acknowledge that. But it’s a very very small piece of what’s going on. Take a deep breath, step back, and look at the bigger picture.

— Go read some Tim Wise, a SWM who Gets It. I’m disturbed no one had mentioned him yet. To quote the man: “Guilt is what you feel for what you’ve done. Responsibility is what you take because of the kind of person you are.” Believe it or not, guys, very few people, and no one I saw in the comments, wants to make your lives harder, wants to make you pay for having the easy setting, or is even asking you to feel bad about getting the easy setting. All we’re asking is that you make a concerted effort to leave the world a better and fairer place than you found it. That’s all. Really.

2) “Pat,” I’d guess you’re college-aged, Libertarian, and either female or a racial minority but not both. Your main mistake is that you assume everyone can apply the points they earn the same way. This is not true. Intelligence, health, and education all deeply affect a person’s ability to make the decisions that give them the chance to get ahead (or even catch up) in life. Either you think people with disabilities and lower intelligence can just pull themselves up by their magical bootstraps, in which case you’re naive, or you don’t believe that they actually deserve to have decent lives because they aren’t smart/quick/strong enough to create those lives for themselves, in which case you’re a jerk.

3) John, I’m not a gamer myself, so I may be missing some subtleties… but my main concern with the game metaphor is that it perpetuates an idea too many of your commenters seem to believe already: that life is some kind of contest, where it is up to some of us to get ahead at the expense of others. I truly believe that there’s enough of the good life to go around, and that much of the reason we all fight so much is the misconception that this is a zero-sum situation where any one person’s improvement comes at someone else’s cost. That being said, the metaphor still rocks my socks off.

4) A shout-out to all the awesome folks who got it right, did the educating, and said the stuff that needed to be said: drtboi, Bryce, Daveon, Muse, Constance, Mary Anne M, iiii, Sigh, kurtbusick, Bryon Q, jchines, pixelfish, angus g, verbranden, Ron Z, David who wrote “next question” where appropriate, Sophia M (I’m nabbing your list of links)… you are my heroes of the day. And above all, John S himself, and The Pint: I want to have your baybeees!

Ok. I’m studying now, like I’m supposed to. Really.

Whatever

I’ve been thinking of a way to explain to straight white men how life works for them, without invoking the dreaded word “privilege,” to which they react like vampires being fed a garlic tart at high noon. It’s not that the word “privilege” is incorrect, it’s that it’s not their word. When confronted with “privilege,” they fiddle with the word itself, and haul out the dictionaries and find every possible way to talk about the word but not any of the things the word signifies.

So, the challenge: how to get across the ideas bound up in the word “privilege,” in a way that your average straight white man will get, without freaking out about it?

Being a white guy who likes women, here’s how I would do it:

Dudes. Imagine life here in the US — or indeed, pretty much anywhere in the Western world — is a…

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Categories: Signal Boosts Tags: ,

A Few Words on Language

One of my fellow students  has talked to me about his desire to help reduce stigma against autism and autistic people.  The stigma is, unfortunately, inherent in the language that is commonly used to describe autism (and autistic people).  Doctors, therapists, and the general public do this to nearly all people with disabilities– and we hate it.  Much of it is subtle, and takes an effort to become aware of.  Here are the examples that come immediately to mind:

Any time you talk about children being “at risk,” or call autism an “epidemic,” you reinforce the notion that autism should be feared.  When you say that someone “suffers from,” “struggles with,” or “is afflicted with” autism, you make autism a dirty word.  When you talk about someone “recovering from” or “overcoming” autism, you imply that autism is a disease, and also that being autistic is not good enough and that anyone who is autistic (no matter how happy they are) needs to change.  When you refer to a child by their functioning label, you dehumanize them, reduce them to a statistic, and indicate that their value as a human being depends on a single measure (their IQ, which was probably measured incorrectly if they are profoundly autistic).

Instead: say that a child is autistic the same way you’d say they are introverted, or tall for their age, or allergic to milk– without a value judgement attached.  Better yet, describe them in terms of their individual strengths, weaknesses, skills and sensitivities.  Talk about teaching them coping skills like meditation and biofeedback to help decrease their stress levels, or about them developing alternative means of communication such as text or sign language, or talk about getting them the supports and services that allow them reach their potential and have fulfilling lives.  Talk about what environments work best for them, and arrange their lives to meet those needs as much as possible.  Measure their successes in terms of their happiness rather than their conformity to behavioral and social norms.

Please don’t ever refer to an autistic person as “broken,” “missing/lacking” certain human qualities, “deficient,” or “defective.” As Lydia (“Autistic Hoya”) writes, “Disability does not mean defective or broken or diseased. It means lacking typical abilities or lacking specific abilities.”  This should be a statement of fact, not a basis for deciding someone’s worth or quality of life.  Many birds are disabled in the water.  Almost all fish are disabled in the air.  A dog is disabled at climbing trees.  A cat isn’t healthier or better for being trained to eat dog food and walk on a leash.  Yet this is what we do with autistic children.  We train them to behave like children whose minds and senses work unlike theirs– and call it an improvement, even with numerous autistic adults saying that their lives are better since they stopped trying to fake being normal.

And please don’t call autism “devastating” or “heartbreaking.”  A parent may be devastated when they discover that their child is homosexual, or plans to be an artist instead of a doctor, or is marrying someone of another ethnic group.  In all these cases, I think we understand that the parent needs to realize that their child is not a possession to be controlled, but an individual with his/her own mind and rights.  And that trying to change something inherent in their child will only end in heartbreak for both.

Life does not always go as planned, and yes, this can be difficult.  Families of autistic people face a good deal of stigma, and have to learn a lot very quickly, and may have to completely revise their priorities and ideas of how a family “should” be.  This, too, is difficult.  Parents of autistic children may fear for their children’s safety, worry about the high cost of therapy, not know how to rearrange their lives to accommodate a child who has very different needs than they expected.  And this is difficult.

But all of this is nothing compared to what an autistic child faces– an entire world that misunderstands him/her, assaults her/him with painful stimuli (over-loud noises, chemical smells everywhere, lights that make him/her feel ill), and on top of it all, expects the child to be the one to change to make everything all better.

It’s hard to feel sympathy for someone we don’t understand, but the autistic child truly needs our sympathy– not pity, not condescension, not praise as inspirational (none of us choose to struggle, and even if we did, we’re not doing it to make some random stranger feel inspired)– but every attempt you can make to put yourself in that child’s shoes so that, perhaps, just a little bit, that child doesn’t constantly have to struggle to be more like you just in order to be accepted or understood.

On Self-Injury, Autism, and Behavioral Therapy

The following is a slight editing of something that I wrote in an email, in response to a fellow psychology student who expressed concern about an autistic child he helps provide therapy for, a 9 year old boy who “smacks his own head repeatedly with his fist when he is frustrated.”

For those not familiar with behavioral psychology, ABA is “Applied Behavior Analysis,” and refers to both a field of study and the resultant “therapies” — a range of operant-conditioning-based methods used to modify behavior. It has many good uses, but can also be used problematically at times.

In theory, ABA consists of analyzing the functional reason why a person engages in a certain behavior (e.g. covering one’s ears serves the function of blocking an aversive noise stimulus, a tantrum may result in a child getting a treat they wanted, etc.) and then changing the situation such that an undesired behavior no longer provides the function it did before (e.g. steadfastly refusing to give in to tantruming will teach the child that tantrums are not an effective way to get treats).

Sometimes, however, the importance of the behavior’s function to the child gets ignored in favor of reinforcing the behaviors that therapists, doctors, parents, and teachers find preferable.

****

Julia Bascom wrote: “behavior is communication.” This applies to everyone, in many ways, but it applies with particular force and importance to people with autism or other developmental disabilities, for whom speech may not come easily.

For example, when I was a kid, I suffered from severe sinus headaches sometimes. It felt like someone was trying to blow up my skull like a balloon. Sometimes it got so bad I’d punch myself in the head, or smash my head against a wall…. which may seem like the least sensible thing in the world to do when your head already hurts. So why did I do it?  I doubt I could have told you then, but now I can give three distinct reasons:

1) Sheer frustration, the way you might kick a car’s tires or punch a wall when you’re furious and need to lash out at something, to let off steam.

2) Because, as bad as the sharp, sudden pain felt, it provided a break, a momentary distraction, from the constant and unbearable steady pain of the headache.

3) Because it provided me with a pain– or anything, really– that I had control over. Being in pain on purpose felt better than being in pain and completely helpless.

So when I hear about the boy you work with who punches himself in the head, the very first thing I ask myself is “what could he be experiencing that is so aversive, so miserable, that punching himself feels preferable?”

Are there fluorescent lights in the room giving him a pounding headache? Is he wearing clothing that feels like bugs crawling all over his skin? Is there a computer making a high-pitched noise that the adults in the room can’t hear? Is he just pissed off because, while everyone’s trying to get him to play the ABC game, he’s spent the last hour trying to communicate something important to his caretakers and can’t figure out how to make himself understood? (These are mostly explanations I’ve heard from adult autistics about why they had meltdowns or tantrums as children.)

Saying he’s doing it because he’s autistic is no more diagnostic or helpful than saying he’s doing it because he’s human. And trying to get him to stop this behavior without addressing the underlying cause would only teach him to hide the fact that he’s in pain.

***

I don’t know if you’re particularly familiar with the “intense world” model of autism: an excellent and reasonably short overview can be found here: http://www.wrongplanet.net/article419.html  But one more piece of evidence in support of it– and one I find profoundly disquieting– is that many of the symptoms that we see in autistic children, such as disturbed sleep patterns, inability to remain toilet-trained, refusal to respond sometimes to the point of near-catatonia, inappropriate levels of attachment, self-injury and destructive tantrums, are all symptoms also seen in deeply traumatized and severely abused children.

What if the ordinary world we live in, the things you and I experience on a daily basis and take for granted, are downright traumatic to an autistic child? If that is true, how do we justify training this child to hide the symptoms of their anguish rather than addressing the stimuli and environment that cause the trauma itself? This is why I cringe every time I see an ABA therapist report that they’ve “reduced autistic behaviors” in a child as if this is automatically a good thing.

Don’t get me wrong– ABA has some great uses, especially when it comes to stopping dangerous behaviors, but when it’s used to teach a child that they get rewarded for hiding their pain or stopping activities that make them feel better, I see it as an inexcusable assault on that child’s very identity– and a real danger to the child’s future safety and integrity as a person.

Children, including (maybe even especially) autistic children, are terribly anxious to please adults, and will do almost anything– at any cost to themselves– to make their caretakers happy. If we want to help autistic children, we must, above all, convince their caretakers not to ask the impossible– “being normal”– of them.

***

Sadly, a lot of the most hurtful things said to and about autistic people are said by people who think they know all about autism– including, I’m sorry to say, a lot of researchers and psychology students. I don’t just worry about the teasing, the blatant abuse, and the violence. In a way, those things are easier to fight back against than the subtler, but no less destructive, assaults that come from well-meaning folks who believe that everyone just wants to be as “normal” as possible. This assumption sends the very clear message to autistic kids — and introverts, and LGBT youth, and ethnic minorities, and anyone else who doesn’t “fit in”– that there is something fundamentally wrong with who and what they are. And that’s enough to break someone’s heart.

And just so you don’t mistake who I’m talking about, a lot of the most ardent autism self-advocates I know are not the ones who live “normal” lives– they are people who are nonverbal, or who require services to help them with ADLs– and, like people with any other disabilities, they still want to be in charge of their own lives and have their human dignity and autonomy respected.

[Note: ADLs are Activities of Daily Living— which can include anything from meal preparation to basic housekeeping to taking medication on a schedule]

It’s hard sometimes for relatively able-bodied people (myself included) to understand and remember that a person who is completely paralyzed can still be in control of his own destiny. That paying someone to help you eat or use the toilet can be as basic and non-embarrassing as paying someone to pick up your trash every week. That even someone with limited intelligence (such as a person with Downs syndrome) has hopes and dreams that need to be respected if she is to have any reasonable quality of life. That none of us are truly independent (we rely on others every day for our safety on the road, for services like plumbing, for the food we buy to eat, and so on).

The disability rights movement is about reminding people that our value as human beings is intrinsic and not dependent on how much we can accomplish. And that many of us can accomplish far more than you’d think if we’re given the right tools.

***

If Stephen Hawking didn’t have his voice synthesizer, people would treat him like an infant, talk about him as if he were not in the room, assume he was profoundly retarded [note: I’ve been corrected on this terminology recently: while “retarded” is still used medically in some cases, many people find it deeply offensive, and the current preferred terminology is “intellectually disabled/person with intellectually disability”], and wonder out loud in front of him if he’d be better off dead. I wonder how many “low-functioning” autistics are in that same position. I’m not saying it’s impossible for autistic people to also have severe intellectual disabilities, but the number who have been assumed “low-functioning” for far too long before someone learned to understand their communication methods is downright appalling.

Autistic people may not always speak, but they do communicate. And it’s up to us to listen.