Autism, as with any “disability”

I have really straight hair. Like, really, really straight hair. It’s also really, really fine. If you picture like Marsha Brady, or Winnie Cooper, that’s how straight my hair is. I think those girls had a little more body than I have though. Over the years, I’ve tried so many different things with my hair, to make it thicker with more body. I’ve tried products like body inducing shampoo, or different kinds of hair gels, I’ve tried different hair cuts. As a kid, my mom would do tiny little braids and I’d sleep on them, wake up in the morning, release all the braids, have incredible waves for a few hours, only to find my hair straightened by the end of the day. We sent away for things, little contraptions you wrap your hair around and sleep on. Foam curlers that use steam, hard plastic curlers that use electric heat. For my concerts, I’d sleep in those pink foam curlers with my hair on top of my head, leave the curlers in all day and take them out just before the concert and then have to use a curling iron to get the ends that didn’t quite curl.

As I got older, I’d spend hours in the bathroom curling my hair. I even tried a little pixie cut to see if I’d be more accepting of my straight hair that way. From there I moved on to bobs, and then finally started growing it out so I could try long layers. I was getting closer to accepting the straightness of my hair, but I still wanted those layers for body, and so that when I did use rollers, maybe the curl would stay just a little and at least add some body when they fell out.

Eventually I decided to straighten my hair. I used a straightening iron. On straight hair. To make it straighter. Might as well embrace the straightness, right?

I’d look at girls with curly hair and be envious. Man, I wish I could have those flowing curls, all that body. Highlights even look better with all those curls. I thought highlights were kinda pointless with my straight hair. I’d look at girls with semi straight hair, but hair that had that perfect wave to it, and I’d covet, and envy.

Then a good friend, with the most amazing curly hair, oh man I loved her curly hair. She wore it short and those curls made it so spunky, especially with her hair longer in front. I loved her hair. You know what she started doing? She started straightening it. She got sick of battling the curls, sick of not being able to run a brush through her hair during the day. She wanted to wear it long, but long curly hair was even harder than short curly hair. So every morning, she straightens her hair.

I finally saw how easy I had it. Especially with it long, I can let it air dry and do nothing to it. If I give it a quick blast with a hair dryer, it’s even a little straighter…

What the heck is the point of my story?

I was having a discussion with Katrin in comments, and she pointed out that since she’s lived with autism her whole life, she doesn’t know any different. We might ask, how do you do it? Or say, I can’t imagine dealing with that on a daily basis. Isn’t that true with all “disabilities”? We just do. We just do it. Even those of us who weren’t born with our “disability” eventually find a way to accept straight hair, to embrace it, to flaunt it, to love it. Ok, maybe love is a strong word. But do you notice how I keep putting “disability” in quotations? I’m starting to hate that word. Not as much as I hate the word disabled, but it’s getting pretty close. I guess I’m starting to hate it because I’ve accepted what others call my “disability” just like I’ve accepted straight hair. You might think it’s a stupid analogy, but is it? I’m much happier now that I can just hop out of the shower and go, without trying to make my hair something it’s not.

I’ve done the same with blindness, just like people with autism have come to accept how they need to do things. Should we call all these things a disability? Haven’t they made us who we are today? A person with autism. A person who is blind. A person first.

If we all had straight hair, it would get pretty boring, wouldn’t it? How boring the world would be without brilliant creativity, without guide dogs, without different ways of reaching the same end goal. If we all focused a little more on accepting our own “disabilities” and on others’, instead of trying to make straight hair curly and curly hair straight, I think we’d all be a lot happier.

7 Comments

Filed under Adjustment to blindness, Autism, awareness month, gratitude, mom

7 Responses to Autism, as with any “disability”

  1. Great post Ro!

    Also you may want to research this. The APA is currently working their DSM-5 and is proposing to change the autism dx. This is the info on it:

    http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94

    I am currently concerned about the proprosed changes. I wasn’t at the beginning but just recently they put out exactly what they plan to do and it concerns me as a person who wasn’t dx as a young child and who doesn’t really engage in repetitious behaviors to the extent that it would be disabling and who isn’t nonverbal nor has ever been, but my drs and various specialists have all stated without a doubt that they consider me autistic and disabled because of it.

    If the APA goes through with this, depending on how various fed agencies interpret it it could have very bad consequences on my benifits and health insurance as well as on many other adults on the spectrum.

  2. Ro

    Ugh, the benefits issue. I’ll definitely have to look at this. I hate being afraid for my benefits. It’s like, go to work. Ok, but are you gonna screw me? Blech.

  3. Yeah and because of my sensory problems there are a vast majority of work places I literally cannot function in at all and I have attempted many times to do the 9-5 M-F 40hr a week thing and end up generally in a hopsital unable to function for a few months because of it. I do not make enough to survive as a dog trainer without my gov’t benefits. I need the flexibility I have being self employed if I am to work at all with my disability effecting me the way it does. But even self employed I still cannot work 40hrs a week and still function, on a really good week I max out at about 15 teaching hours (I don’t get paid for the time I spend doing e-mail and phone support which is a lot more hours but I consider a wash), most weeks I can’t do more than 10. You can’t live on that! If they change this and consider me non disabled that too takes out my need for a service dog and there goes that huge support in my life, the big one that really does help me travel and live independently and safely on my own. Basically I would be really screwed. I wrote my comment to the APA, I hope lots of other people do as well and I hope they listen.

  4. Great analogy, Ro. People first language is so important – it drives me insane when i hear the blind, the (anything) as it sounds so much better to put the person first who is ____.

  5. Can your physicians write comments as well? Do they feel strongly enough about it to go to bat for you and others like you? If they get it from both sides, it might do some good.

  6. Yes anyone can comment. Physicians, family, caregivers, friends, affected individuals, advocacy groups, etc. I talked with my therapist today and he thinks that even if these proprosed wordings did go through that I’d still be all set with the way they have worded certain things, hopefully, which was a bit of a relief. Like even though I didn’t have language delays, I have never talked much, verbal is not my preferred means of communication, writing generally is much easier. When I was a kid I didn’t even talk much. So he thinks I could fit that criteria because of that. And there was some other stuff.

  7. Love this post! I really hate the word “disabled” too. I love ur one email signature about you not being disabled but your eyes are thing. I don’t consider myself disabled since I’ve delt with it my entire life. Its just a pain sometimes– ouch! who moved that chair?– hehe.
    I actually never gave the whole person-first language thing much thought until I started taking Education classes for special education. (AKA students with exceptionalities. like that much better.) We started talking about it in class and now it drives me absolutely nuts if people don’t say, “My friend Jenna, who is blind…” but instead say “my blind friend.” Ok, I don’t think I’ve had someone do that too me in awhile, but it bothered me even when I didn’t think of person-first language.

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