Sunday, September 30, 2007

I'm a big advocate

I've recently become interested in autism, for reasons I haven't quite fathomed yet. My interest has led me to some fascinating books (Born on a Blue Day by Daniel Tammet) and web sites.

An offshoot of my interest in autism has been a sea change in the way I view disability rights. Many of the blogs I read, for example, see the Jerry Lewis Muscular Dystrophy telethon as really harmful to those rights. The argument is that it promotes a "look at the poor crippled people" model of disability. It came as quite a shock to me how many people with what I used to see as afflictions do not want to be "cured," and see what they have, be it autism, deafness, muscular dystrophy or whatever, as an integral part of who they are.

There is a way that this relates directly to me, and a blog I read links to a really emotional series of posts on the issue. You see, I'm overweight, and prejudice against fat people is perfectly acceptable in our society. I have several blogs, and it's one reason you'll never see my real picture on any of my blogs: it makes my words too easy to dismiss.

A gentleman who used to be a friend but who I now no longer know or understand started randomly posting unneccesary criticisms of people on a bulletin board he runs. When I called him on it he seemed to think it was OK to do this, then later on the board, in the same thread, posted this gem regarding people who wear Star Trek uniforms:
I can better understand it at a Star Trek convention...but it still gets me to see, oh, say, a 300-pound man wearing the uniform proudly, even at Thundercon. The one I saw was out of breath, overflowing a folding chair in the hallway. This is nothing against 300-pound men, mind you; it's just that it looks no more fitting than the same guy wearing a Speedo. It jars the senses, and it gets me that he doesn't see that. It's not his appearance that's at issue; it's his blind spot. I guess that being a tad wider myself than my height (or lack of it) should allow, I feel he should represent us chubbies a little better, by golly.

Now mind you we first met in the late 1970s and last saw each other a few months ago, so he's perfectly aware that I tip the scales at near his 300 pound (gross weight?) limit. So let's see what he's saying here: an overweight person attending a Star Trek convention with other conventioneers shouldn't be able to dress as his favorite character simply because of his weight. The options, I suppose, would be to pick a costume that hides one's weight (yeah, right) or to not attend the convention. I wouldn't have said this before, but I wonder if the latter might be my former friend's preference.

I've been fairly silent and ashamed up to now regarding my weight and the way others see it as a fair target. I'm trying to change that. The blogs I read have given me a little courage, and with some work perhaps I'll get a little more, and stand up to the idiots who think it's OK to denigrate fat people.

And perhaps I'll show up at a Thundercon, proudly wearing a Starfleet uniform. To hell with what any bulletin board moderators think.

23 comments:

Thorn said...

Maybe your "friend" thinks fat people should only go as Klingons? Or I suppose you'd be allowed to go as a later-years Scotty. But heaven forfend if a fat person's favorite character was McCoy (who was always my fave TOS character).

I'm still working on my courage too, but I really hope you do go to Thundercon, proudly wearing the uniform of your choice. And your former "friend" can choke on it. :)

Anonymous said...

"Choke on it" seems strangely appropriate.

I'm particularly glad to see you comment on my blog, as it was your series of posts that inspired this one. I think you may be my new hero.

Thank you.

Anonymous said...

Let me Hear Your Voice by Catherine Maurice is a very good book about the struggles families endure when caring for aand loving a family member with autism.

Nice blog.

Anonymous said...

Not a book I'm familiar with. Thanks for the heads-up.

I'm glad you like the blog. I do my best.

John said...

1st: Good to see you writing again. Maybe a new found cause/passion will keep you at it for awhile.
2nd: I've always found autism somewhat interesting. Our neighbors across the street have a young autistic boy (4yrs, I think) that is progressing in function-ability and interaction. Most autistic kids that I've seen have been relatively high functioning.
3rd: I remember the bulletin board exchange that you refer to here. Too bad that they became so exclusive. For a while I enjoyed reading and had many thoughts in common with that BB. When I found that I could no longer access without another test/approval, I just dropped them.

I look forward to reading more of your rants and am still waiting for some of the comedy stuff!

Anonymous said...

Actually that was a different BB exchange. Fat prejudice is everywhere, it seems.

Ettina said...

Let Me Hear Your Voice is one of those nasty 'mother fighting to save her child from autism' books. As an autistic person, those books make me sick.
Some good books by parents of autistics include Elijah's Cup by Valarie Paradiz and Finding Ben by Barbara LaSalle. As for books about parents of other developmentally disabled kids, I really like Her Name is Montel by Casey Evans (Montel has cri-du-chat syndrome and is severely disabled).
In broader disability rights, the books that Diverse City Press publishes are great. I haven't read them all, but First Contact: Charting Inner Space by David Hingsburger is one of the best of them.

Anonymous said...

Ah- like the video from Autism Speaks where the idiot mother talks about wanting to drive her and her child off a bridge. Gotcha. I really wish that video would be banned as pornography.

Thanks for commenting, and thanks for the book recommendations.

Anonymous said...

Ettina,

SO, you must have a problem with mother's who are trying to have their children recovered from autism? Interesting. Being as though I worked with autistic children and their parents for many years, I had no idea that autistic persons were so opposed to their mothers. You should read some Freud if you have such problems with mom. Maybe you are more of a Bettleheim person. For a person with autism, you have remarkable communication skills.

Anonymous said...

Wow. My blog has become an autism battleground based on one post. Go figger.

I don't mind discussion, but play nice, children.

Just to belabor the obvious (a skill at which I excel), I would think the point of view of one who works with autistics would most probably differ somewhat from the point of view of one who is autistic. I don't know; maybe it's me.

And having communicated with a number of autistics whose speaking skills range from zilch to way better than mine, I have to ask, what's so remarkable about Ettina's communication skills? Just curious.

Anonymous said...

The first sentence of the “Diagnostic Features” in DSM says “The essential features of Autistic Disorder are the presence or markedly abnormal or impaired development in social interaction and communication….” Point being that communication or lack thereof seems to be one of the hallmarks of autism or autistic spectrum disorder. The person who posted a message as an autistic individual has remarkable communication skills considering DSM criteria, even in adults with the disorder who “continue to exhibit problems in social interaction and communication…”

Anonymous said...

Oh yeah, DSM has always been without error, especially regarding autism.

(sarcasm mode off)

Navi said...

great big wow.

person who works with autistics must work with a very low number of autistics and doesn't really understand who Bettleheim is.

Communication deficits come in a variety of flavors. There are a number of autistics who cannot speak but can type fluently.

It's also said that autistics don't read emotions - they may not read facial expressions very well, or understand emotions expressed with language - but they definitely read emotions. It's this kind of close-minded prejudice people are fighting against.

And I am a parent of a severely autistic, non verbal, 'low functioning' child. Some would consider me abusive for loving him as he is (and yes, I do have him enrolled in a school to help him progress, but not to 'cure' him).

And well Freud, while very useful, is considered rather outdated. I somehow doubt anonymous's credentials because of anonymous's own comments - this layperson seems to know more than he/she does.

Anonymous said...

My last comment was meant sarcatically. I thought that was evident. Of course DSM is frequently wrong or it wouldn't need annual updates.

And I am a layman as well.

Anonymous said...

So, without DSM, how do we agree on diagnostic criteria? Does anyone agree on the ICD?

Anonymous said...

regarding Freud being "outdated"...are we then to assume that the ideas of the unconscious and early childhood experiences are outdated too?

Anonymous said...

Hmm...methinks I can cover the last two comments with one of my own:

Just because something is flawed doesn't mean it isn't useful. Humans have many flawed and flat-out incorrect concepts we continue to keep around because despite their flaws they are nonetheless useful. A couple of examples:
-The idea of "negative frequency" in wave propagation. There is no such thing as negative frequency, but it makes the math a helluva lot easier.
-The idea that all men are created equal (I se the masculine gender because that is the way it is framed in the U.S. Constitution.) "Equal" doesn't exist outside of the realm of mathematics. However, it is a useful (if imaginary) concept to see us all as created that way.

When a previous commenter stated that Freud was outdated, does that mean that everything that Freud ever said could, and should, then be jettisoned? Hardly. Andif one takes that position one is, I think, putting words in the previous commenters mouth (or on his/her keyboard) in order to build a straw man argument. If one has to build a straw man for one's argument, one must not have much of an argument of one's own.

Similarly, if one is arguing that the DSM is a perfect document, I would beg to differ. However, if one is arguing that, because of its imperfections it is a useless document, I would also take exception. I happen to think, based on some personal experience and listening to the opinions of several autistics, that one place where it has pretty severe shortcomings is in its information regarding autism.

One could argue with me, or one could do what I did - find out the opinions of those affected by what the DSM says about them.

Remember, it wasn't that long ago that the DSM listed homosexuality as a mental illness.

Navi said...

I understood the sarcasm. My wow is largely in response to Ettina's detractor. All the Anonymous's here get confusing...

Also, note I said Freud is useful, in addition to outdated. But frankly the Anonymous who was arguing against Ettina's comment wasn't using Freud in a very useful manner, and was using Freud in more of an outdated manner, and appeared to be claiming to be a professional of some sort, but his/her comments still leave me with doubts.

BTW, Unstrange Minds by Roy Grinker is another good Autism book by the way, by a father of an autistic daughter, and a book I think those who agree with Ettina will be less likely to be offended by (but those who are convinced there's an epidemic will be offended - just see its amazon reviews). Freud is mentioned in that book as well. Bettleheim is mentioned also.

Now that I think of it, The Ettina Detractor is trying to correlate her distaste for "mommy curing autism" books with blaming the mother, with his Bettleheim comment, in addition to his Freud comment. I fail to see the correlation, myself, and think it is a stretch to create one. Especially considering I'm not fond of such books either, and I certainly don't consider myself a 'refrigerator mother.'

*and sorry if this is double sent, it's being goofy*

Anonymous said...

Yeah, "anonymous" is one of the most prolific authors ever. :)

And there was no double send, but Blogger can be wonky. I've considered switching to WordPress, except I'm lazy.

Itkind of amazes me that I have 69 posts on other subjects, with damn few comments. I do one post that peripherally mentions autistics and I get comments out the wazoo.

I think I'm going to randomly throw the word "autism" into the rest of my posts just to increase my readership. ;)

signed,

the anonymous author of this blog ("call me Ishmael")

Navi said...

lol.

I think it has something to do with you posting a link to to your blog in the comments of the blog of an autism advocate...

At least that's how I found you. and I just couldn't stay out of the comment war going on here ;)

Anonymous said...

You must be talking about Ballastexistenz. Amanda's one of my favorites. Must be her communication deficit. :-)

Stefanie said...

I know this is an old thread, but I wandered here from Shapely Prose, and as the sibling of an autustic man, I can't help commenting.

I have very strong reservations on the whole anti-cure autism stand. Autism manifests itself with a wide range of severity. I do agree that for people with autism that are what is sometimes referred to as "high functioning" a "cure" approach is not the most effective in dealing with their disability.

However, there are many people with autism who are like my brother. He has minimal ability to express himself, or advocate for himself, he cannot live independently, and for reasons that are still not 100% clear, he has had periods of prolonged violent behavior. If my family were offered a "cure" that would enable my brother to express himself, live independently, and overcome his violent periods, we would accept it in a New York minute.

I know there are all sorts of anti-cure arguments about erasing a person's unique personality and talents, but for someone like my brother, it's rather a moot point since his autism is so severe as to obscure any talents he may have and isolate him from the rest of the world.

I guess in brief, I don't think that a cure is the right approach for all autistic people, but there are many for whom a cure would mean the world.

Anonymous said...

Hello Stefanie,

Nice to know I still have the occasional reader.

As the sibling of an autistic, one could say your opinions carry more weight than mine. What *I* will say is that you state them eloquently.

Autism/autistics and how such should be treated is a hot-button issue, and one that has passionate adherebts on all (I was going to say "both") sides. Two things, I think, are certain:
1. Dialogue is a good thing. And I appreciate your comment on my blog for that reason.
2. There are severe shortcomings in the way autistics are being treated now, whether you consider "treated" to mean something medical or something social.