Sunday, March 4, 2007

Dirty Laundry

I almost titled this post "The Good, The Bad, and the Ugly". I figured I'd link to Thursday's post for the "good", Friday's for the "bad", and today's would elucidate the "ugly". But then I thought that might be too tacky.

What I want to talk about today is something I have been thinking about for awhile. It's how hierarchies are developed in the disabled world, especially when it comes to those with autism spectrum disorders.

A side discussion on this started in the comments section on AutismVox, but I thought it deserved a topic of its own.

Developing hierarchies within minority communities is nothing new. Within the African-American community in the US, skin color has served for a long time as one of the primary factors in developing an internal hierarchy within the community. Those who were light skinned were looked upon as more cultured, more civilized, and more likely to succeed. Conferences are held to study how this still goes on today.

When we were looking to adopt, we became acutely aware of adoption's dirty little hierarchy. Basically the main pecking order (for popularity of children) goes like this: white > asian > light skinned hispanic > mixed race african american > black. Native Americans are generally left out of this, as their tribes can (and often do) veto adoptions outside of the Indian Nations. There are also two other factors that dictate "desirability" and popularity. The first is healthy beats disability, and the second is babies beat older kids.

Sometimes the above factors interact to bump a kid up or down over another, but for the most part, skin color rules. No one ever talks about this much in public, but when you're looking to adopt it's communicated to you by the system (agencies, lawyers, and even some other parents thru adoption).

So one of the "interesting" factors that has emerged as we travel this journey with autism is of how hierarchies are formed within the autism community. It would seem that, just like society as a whole, verbal beats non-verbal hands down, in a big way. When people talk about "high functioning" vs. "low functioning", often the only major difference between the two groups is whether the person is verbal or not.

Probably the other big factor that enters into this is whether the individual conforms to societal norms for civility. Thus throwing a tantrum, screaming, yelling, stomping your feet, etc. instantly loses you 50 points on a 100 point scale. Not only is this valued in society as a whole, but even when I've been at functions where there are many autistics, the parents of those kids "acting out" are still looking around furtively, while some other parents seem to have a smug look about them. While the "guilt" of the parent of the kid acting out may be a holdover of how society treats her everyday, where does the smugness of the parent of a kid on the spectrum not acting out at the moment come from? [As a side note, I must confess that when I am in public and there is a NT kid "acting out", I sometimes am guilty of getting a little smug-right or wrong, I consider this different than looking down on "one of our own"].

I think that the only other major factor that enters into the equation of where one sits on the "autism hierarchy" is whether one has complete bowel/bladder control.

Other things that you might think are important don't seem to matter quite as much. Level of academic achievment, ability to play games, and ability to communicate matter, but don't seem to rise to the level of importance as the first three things I've mentioned.

Perhaps it's just innate, that as humans we want to a)place everything into a category, and b)be competitive. But I think we hurt ourselves, our kids, adult autistics, and everyone else in the "autism community" when we set up petty little hierarchies like this. Most of the "normal" world will probably have the same stereotypical view of you/your kid once you say the word autism. Trying to show how you are better than "those other autistics" hurts us all, whether you're talking to someone in the outside world, or someone within the autism community. We'd be much better off trying to change the stereotype that society as a whole has of autism. It's a harder (and slower) process, but in the end will serve us all much better.

Joe is 210 :( :(


kristina said...

I think I touched on a similar thread in my post on "varieties of Asianness" today, though much less thoroughly....

Mom without a manual said...

Great thoughts! I agree that the rift between us autism families is crazy!

I hope you don't mind but I referenced to you a few places in my blog today. You have been keeping me thinking lately!

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abfh said...

Yes, it's unfortunately very common for people who have been victims of prejudice, and who ought to know better, to behave the same way toward others.

Sorry about the deleted posts. Blogger is acting up, and I can't get it to display a link in the text of a sentence properly.

I'll just post the link without embedding it:

This news story is about the Cherokee Nation, which just voted to kick people with African-American ancestry out of the tribe.

The Jedi Family of Blogs said...

These thoughts are very interesting & reminded me of some thoughts I've had on this subject, too. Although some of this tendency towards hierarchy is self-imposed by different groups, I think there are occasions where the distinctions between people are imposed by those outside the group- an example being the adoption hierarchy that is transmitted by the lawyers, etc.

In my experience, from the able-bodied point of view walking (even assisted, as by canes or crutches) beats using a wheelchair, which turns out to be a really arbitrary way of perceiving things, since in many situations a wheelchair can allow someone to be much more functional than walking. I discovered all this when I was a wheelchair-user who was also able to walk for limited distances with canes. When I was with groups of disabled people, however, the idiocy of this hierarchical way of thinking was recognised & pretty much ignored. I played wheelchair basketball for 6 years, in 2 different countries, & found that this resistance to hierarchy was present whenever I was in groups of disabled people. There were people associated with the teams who, because of their disabilites, could not play basketball, but they were not looked down upon by those who could. We all hung out together & enjoyed each other's company without setting up artificial discinctions. I remember times when I would assist college friends who were walking-disabled by letting them hold onto my wheelchair on icy days, so they wouldn't fall. We were all in the same (disabled) boat & I was glad to help... This is not to say that there are not petty, unpleasant disabled people out there :) but an example of people living with the realities of their group not subscribing to the imposed attitudes.

I am wondering/thinking, however, that what I experienced when I was a wheelchair user applies to autistic folks, too. The "hfa" & "lfa" thing seems to me to fall into the imposed-from-the-outside category, & my observation of my own autistic son's perspectives on other autistic people is that he doesn't make such distinctions. He has worked to understand the kid in his school who has more trouble with speech than he does & at times has chosen to play with him rather than his usual friends (I think he finds their differences intriguing). When he does have difficulty meshing with other autistic kids it's because their particular interests don't co-incide, rather than any sort of hierarchical thinking.

This issue of subdividing human beings along often arbitrary lines is a serious one & takes a lot of insight & courage to address. I'm glad you've tackled it here!

Club 166 said...

I've been thinking about this for awhile, but the discussion on your blog triggered me to address it here. I also think your post is another useful take on this.

...I hope you don't mind but I referenced to you a few places in my blog today. ...

Mind??? Thank you!

That Cherokee Nation thing is just sad, nuf said...

...This issue of subdividing human beings along often arbitrary lines is a serious one & takes a lot of insight & courage to address. ...

I'm a parent thru adoption of kids with different racial makeup than my own, one of whom is on the autism spectrum. Doesn't take much insight, it's our reality. And courage? Purely self interest. Like every parent, trying to make the world just a little bit better for my kids. Thanks for the kind words, though.

Club 166 said...


Forgot to address the wheelchair thing.

Interesting thoughts on being chairbound. I, too, spent some time in a wheelchair (7 months, followed by 5 months on crutches) when I was younger.

I mostly encountered pity while in a chair, whereas I was treated as much more "normal" when on crutches. I think there was an assumption that I was permanently disabled when I was in a chair, but only temporarily so when on crutches.

Interesting anecdote:
I once met an oral surgeon who had become paraplegic following a car accident during dental school. His school didn't want him to finish, even though his hands were fine. Finally they relented.

He related that one day, upon exiting the operating room, dressed in "scrubs" with a stethoscope around his neck, in his wheelchair, he asked a nurse for some Tylenol for a headache. The nurse's response? "Has your doctor ordered that for you?"

The Jedi Family of Blogs said...

My experience was similar to yours, when encountering able-bodied people. Their hierarchy seemed to be that walking was best, then walking with a cane, then axillary crutches (the kind you use when you break your leg), 2 canes & forearm-style crutches seem to be lumped together next, then walkers of all sorts... the chair elicits the most pity & most sense of hopelessness from a-b's. The thinking is so black-&-white that it's hard for most non-disabled people to imagine that a person can possibly use a chair & also be able to walk (why wouldn't they prefer to walk?) or that a wheelchair can be much more functional than walking for some (as long as there are ramps & elevators, & not much snow). The pressure to conform to this way of thinking is huge... but it was practically non-existant when I was in the company of other disabled folks. Most don't buy into it (some do, because of family & societal pressure) & it was always a real relief to hang out with disabled friends & just be myself. Where the hierarchy came into play was when it came to relationships... having a non-gimp as boy/girlfriend was always subtly seen as better than another gimp. Sigh.

This is why I'm interested in how the whole hierarchical thing fits into the autism scene. Although I am certainly on the spectrum, I am not identifiably so, & don't have the societal pressures of being labelled as autistic. I'm not sure how the whole hierarchy things works within the autism community. From observing my nearly 11-year-old son, I know that he is less likely to follow the crowd & popular opinion than most kids his age, & he's really proud of his independance. I'm hoping/thinking that this might make him less susceptible to hierarchical thinking...