Whose Planet Is It Anyway?

Wednesday, May 03, 2006

My Autism Is Not a Hemorrhoid

The international autistic community will be celebrating Autistic Pride Day on June 18th. That's what the event is called, Autistic Pride Day, in the same way that any minority group would put its name first when expressing pride in its identity and demanding recognition and respect from society.

Excuuuuse us if we're being politically incorrect by not calling this event "a day for people with an unmentionable abnormality to whisper about it." Or perhaps "a day for people who have autism, but who would never dream of being defined by it, to wish that nobody would talk about it because it's just too embarrassing to mention."

This rant about person-first language is brought to you by the letter H and a blog entry entitled My Husband the Hemorrhoid, which I came across while I was browsing through the many posts written for Blogging Against Disablism Day. In this particular entry, the author writes about how annoyed she felt when a mother said that her son "is ADD" while introducing him:

When did it become acceptable to introduce our children by their physical and/or mental capabilities? When did it become the norm to define our children by a condition? I can't think of any moment in a polite and civilized society where we would treat another adult this way.

"Hi, I'd like you to meet my friend Betty. She's a toe fungus!" Blech.


The author goes on to proclaim that a child's diagnosis is nobody's business—that it is personal information and that a parent is showing "disrespect" for the child by mentioning it to others. The post concludes with this statement:

...the next time a (mother) introduces me to her child and says "He's ADD/Autistic/Mentally Retarded", etc, I'm going to shake her hand.

Then I'm going to turn to my much beloved and beleaguered spouse and say, "I'd like you to meet my husband. He's a hemorrhoid."

I mean you've got to make a stand somewhere.


I'm sure this blogger (who identifies herself as a mother of a child who "has autism") wrote that post with the best of intentions. I'm sure she genuinely believes that it's more respectful to stay quiet, to keep all abnormalities forever tucked away behind a tightly shut closet door, and to lump neurological differences into the same embarrassing and unmentionable category as toe fungus and hemorrhoids, than it is to talk about them in a matter-of-fact way.

But she is wrong. The whole concept of using person-first language to gloss over what the majority regards as shameful and undesirable traits is wrong. Our society is never going to overcome its prejudices as long as we awkwardly dance around the fact that we have fundamental and lifelong differences.

My autism is not a hemorrhoid. It is an intrinsic part of my identity, like my gender, my nationality, and my hair color. Actually, it's much more a part of my identity than my hair color, which can be changed in an hour at the beauty salon. So why is it that some people think it's perfectly fine to describe me as a brunette, but "disrespectful" to describe me as an autistic? Presumably it's because they consider my hair color (even if it comes out of a bottle) to be a normal attribute, whereas they view my autism as a tragic misfortune that cannot be politely mentioned.

Using person-first language is the semantic equivalent of averting one's eyes when somebody comes into the room in a wheelchair or on crutches. It reflects prejudice, awkwardness, discomfort, and a negative value judgment.

Autism experts Tony Attwood and Carol Gray have written an article called The Discovery of "Aspie" Criteria, in which they discuss how the diagnostic criteria could be worded in positive terms and also make this observation:

In referring to people with respect to their talents or abilities, politically correct "people first" terminology is not required; labels like musician, artist, or poet are welcomed and considered complimentary.

In the world that I want to live in, it would be just as acceptable and unremarkable for a mother to say that her child is autistic as it would be for her to say that the child is a gymnast, a dog lover, or a stamp collector. And the person to whom the child is introduced would just smile and say, "Nice to meet you."

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21 Comments:

  • YES.

    I wish it was socially acceptable to walk up to someone and say, "Hi, my name is Janna, and I have ADHD. Howyadoin?"

    Still feel a bit like a liar cuz I haven't disclosed to my boss.

    By Blogger Jannalou, at 1:33 PM  

  • I'm truly sorry that you took offense to my essay.

    Please don't mis-state my position with "the author writes about how annoyed she felt when a mother mentioned her son's ADD while introducing him".

    She didn't "mention" it. She introduced him with "He is".

    Semantics, yes. But language is powerful.

    As I stated before, obviously everyone is entitled to define themselves in whatever way they wish--and why should I have a problem with it? It's using it to define *others* (especially in front of them as if they couldn't speak for themselves)that makes me uncomfortable.

    My son would rather not be introduced or defined by his disability. He would prefer to discuss it with others himself. Or not. It's his information.

    He may feel differently when he becomes older.

    So who am I to make that decision for him?

    I do appreciate your point of view, though. :-)

    By Blogger Attila The Mom, at 1:45 PM  

  • I totally agree. Unfortunately, many of these new identity labels come from medical classifications. "Autistic" is fine. But do you say "I'm ADHD"? Jannalou? And the word "disorder" is implicit in the acronym. Pretty much the same issue with "Asperger Syndrome". I have generally adopted "Asperger autistic". I'd prefer simply "Autistic" but I just find a need to qualify it.

    By Blogger Joseph, at 1:53 PM  

  • BRAVO.

    I wish I lived in a world where it's safe to be autistic. Where it's safe to tell my gymnastics coach (instead of just having it on my sign up sheet), "My name is Kassiane, I'm autistic & epileptic, but that doesn't mean I'm not a good tumbler too." I don't want to get kicked out of another class, argued with, et cetera.

    It caused a lot of problems in college too. Like, "autistic people are retards, they don't go to college" from my sociology instructor. *sighs*. I hate that word.

    Autism should be something cool, interesting, but not like a train wreck/tsunami/mad cow disease. More along the lines of gymnast/stamp collector/cat herder (good luck with that last one btw). Just something interesting, a bit different, but not an appendage. I think I'd die laughing if someone introduced me as a "Person with gymnastability".

    By Blogger Kassiane, at 1:58 PM  

  • Oh, this is so funny.

    I was writing the above while you were writing comments on mine!

    Absolutely no offense taken. I do get the aversion to "People First" language. It's awkward and cumbersome.

    And I do get the "taking back the word and owning it" part as well.

    Sometimes it's really hard to tell what the right thing to do is. What's right for one is wrong for another.

    I truly do enjoy your blog. I'm learning quite a bit!

    By Blogger Attila The Mom, at 2:05 PM  

  • Jannalou: There's no need to feel like a liar. I haven't told anybody at work either. Why give them ammunition that they could use to discriminate?

    Attila: I've changed the post as you requested. I wasn't trying to misrepresent your views. And if your son would rather not have his condition discussed with others, that's entirely his decision, as you say. Not all children feel the same way as your son, though. It's possible that the mother you criticized in your essay was not ignoring her son's preferences but was using the same language that her son uses to describe himself. I wouldn't make an assumption one way or the other.

    Joseph: I don't use any label that has "disorder" or "deficit" in it, either. I'm not sure what can be substituted for ADD, though. Hyperactive wouldn't be accurate if you're describing someone who is easily distracted but not hyper. Can you think of anything better than "easily distracted"?

    Kassiane: I hope you filed an official complaint about the sociology instructor for harassing you like that. What a creep!

    By Blogger abfh, at 2:15 PM  

  • I tell people that my son 'is autistic', but only when the timing is right.
    I mean, it's not the 1st thing I tell people when I meet them for the 1st time, but I would tell them quite soon after. My son wouldn't be able to communicate that himself yet.
    Sometimes he gets angry or upset in public and appears to be a naughty child. I use discretion in these circumstances in whether I explain his behaviour via his diagnosis or not. I'm always aware that I don't want to add ammunition to the public's perception of autistm as a 'terrible' thing and a 'tragedy' for the child and parent.

    By Anonymous emily, at 2:35 PM  

  • Joseph,

    If it made grammatical sense to say "I'm ADHD" then I would. Unfortunately, the only time "ADDult" makes sense is when it's typed. "Hi, I'm Janna, and I'm an ADDult," would just get people thinking I'm crazy, since I'm obviously an adult.

    I would have a diagnosis that doesn't allow for the kinds of things I want to be able to do/say. And I don't want to tell people I'm hyperactive, because I'm actually inattentive type - which word gets all manner of other fun misinterpretations. (Of course, I'm inattentive because my brain is hyperactive, but whatever...)

    So, what am I? We need a new word!

    By Blogger Jannalou, at 3:37 PM  

  • I've heard "ADDer", as in "ay dee dee er".

    By Blogger ballastexistenz, at 4:40 PM  

  • I like to tell my son he is a "right-brainer" or "creative one" or "inventor" or "visionary".

    I tell him if everyone was "normal", the world would never change, but God chooses special minds like his to move mankind forward.

    Then again, I've been know to be full of it...

    By Blogger r.b., at 5:54 PM  

  • Sorry but I don't understand the need to identify yourself with a label upon meeting someone for the first, or third, or tenth time. If it comes up and it seems necessary to fill somebody in, fine, but otherwise I don't get it.

    You don't walk up to someone and say "Hi, I'm Irish" or whatever extraction you may be.

    I've met people who feel it's important to share their religious background within the first few minutes of conversation. It's a little off-putting.

    Anyway, I liked this entry. Sorry to be a hemorrhoid.

    By Anonymous Anonymous, at 6:31 PM  

  • The community of ADHD adults should come up with better terminology that doesn't include "disorder" in it. I'm not aware of any efforts in this direction, however.

    By Blogger Joseph, at 6:36 PM  

  • How about "hypoattentive"? There you go. You're welcome :)

    By Blogger Joseph, at 6:41 PM  

  • I posed the question to a LiveJournal discussion group. The responses so far have been phenomenal. My "favourite" was the person who told me I should just say I have ADHD and mentioned a prof who told a student that they weren't "an epileptic", they "had epilepsy". The response to that I just read was perfect and concluded with "Person first language is just insulting."

    We do need something that avoids the connotation of disorder, though. I may feel confused, lost, and broken sometimes, but I certainly don't feel that way all the time - nor even close to half the time!

    By Blogger Jannalou, at 8:26 PM  

  • My "favourite" was the person who told me I should just say I have ADHD and mentioned a prof who told a student that they weren't "an epileptic", they "had epilepsy".

    Person-first language applies well to most disabilities. It does not apply well to autism or something such as deafness, which really become a pervasive part of the personality of the individual. I don't think it applies well to something such as ADHD, unless you believe ADHD is something you acquired and that after removing your ADHD you'd still be the same person.

    By Blogger Joseph, at 8:31 PM  

  • I don't think it applies well to something such as ADHD, unless you believe ADHD is something you acquired and that after removing your ADHD you'd still be the same person.

    I agree.

    I don't think that ADHD is something I acquired, and there is no way I would be the same person without it!

    I did find a way to explain this over on LJ:

    I would say that ADHD is easily as big a part of my identity as my Christianity is. I should be able to say "I'm an ADDer" (or whatever) as simply and easily as I say "I'm a Christian". It's no different, except that I chose Christianity.

    In fact, given that ADHD is one of those things about me that won't go away, it should be easier to say that I'm an ADDer (or whatever) than that I'm a Christian.

    As one autistic woman I know puts it, ADHD is just as much a part of me as my sex, my gender, and my height. (I'd quote her but I can't find where she said it right now. But for great reading, check out her blog: http://ballastexistenz.autistics.org.)


    Oh, hey, for anyone interested, you can read the thread (and, I think, comment!) at this page.

    By Blogger Jannalou, at 9:11 PM  

  • I am quite comfortable now describing myself as "autistic" or "on the autism spectrum" -- but overall I do not have an emotional reaction to the notion of whether someone uses "person-first" language or not.

    I do think that this "person-first" way of expressing something is a bit silly in the sense that I don't call myself a "person with femaleness" or (when I was in school) a "person with studentness". It's linguistically awkward, and that is my main gripe.

    As for the "what do we call ADHD?" question, I think this suggests further questioning of what ADHD actually is. Autism can be described as a neurological difference -- so, probably, can ADHD.

    By Blogger Zilari, at 10:24 PM  

  • Hee. I had that instructors job, between the comments and refusal to meet my (really simple) accomodations. Photocopying onto green ISNT that hard, and neither is allowing sunglasses and headphones. Sheesh.

    No one at that school ever messed with my accomodations again...

    By Blogger Kassiane, at 10:53 PM  

  • Yay Kassiane!! Way to kick ass!

    By Blogger abfh, at 10:45 AM  

  • I just wanted to thank you for opening up a dialog about the whole "People First" concept.

    I truly believe that this kind of debate can only create more openness in how we all view and/or address those in our population who have disabilities.

    Your post was brilliant.

    And thank you for changing your post to more accurately reflect my views. I truly appreciate it.

    By Blogger Attila The Mom, at 1:17 AM  

  • hi ABFH,

    given the name of this thread, i thought i'd let you see the letter i sent a couple years ago to the BMJ...

    http://bmj.bmjjournals.com/cgi/content/full/325/7364/597#resp1

    I concluded with this: "I believe that biological causes for autism cannot be found, regardless of contributory factors. For this reason, I find the whole vaccine debate tiresome. The research should be oriented to discovering the types of interactions between the person and his or her environment are that bring about autistic states. Trying to find a biological cause for autism is akin to attempting to find a psychological basis for piles."

    Nice to see autism and piles cropping up again... ooh, er.... :/

    ;)

    David N. Andrews BA-status, PgCertSpEd (pending)

    By Anonymous Anonymous, at 11:05 AM  

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