Tuesday, May 13, 2008

Changing Hearts and Minds

At the end of a long day today I suggested to Nik that we take the kids to the pool. It has been cold and rainy here and I didn't find the time or energy to take them outside all day so a bit of time swimming for them and the jacuzzi for me felt like just the ticket. It was crowded when we got there but soon the place cleared out and we had the wonderfully warm therapy pool all to ourselves. The kids were having a blast jumping and diving and Oliver especially liked squirting water through the newly acquired space in his lower line of teeth (This time I found the tooth!). All in all, we were feeling pretty good about ourselves as we ushered the kids to the steps of the jacuzzi before going to the locker room.

Sitting in the jacuzzi were familiar faces. The doctor with the heavy Vietnamese accent was someone Nik had consulted with before, plus his son and RT were on the same soccer team for many years. He is also a regular at the pool. Then there was another family -- two older kids and a Dad -- from Uruguay. Another lady, also a regular, from Brazil was there. When my Swiss husband sat down it felt a little festive even though we knew only the doctor by name. But the good doctor knew everyone and started the introductions. When he got to our family he started off by saying that Nik was Swiss and that I was "purely" American. And then, in the next breath he said: "And they have two children, the oldest one there has autism. You know autism? It's like he can't hear anything. And there is some trouble with the brain. ... It's like Rainman. You know Rainman?" Everyone shook their head "yes", and probably decided to let it drop if they had half a brain and could judge by the look on my face.

And here's the thing. I was upset but not as upset as I might have been. Yes, what this guy said was stupid. And very rude, considering that Oliver was sitting right there. But I honestly don't think Oliver was listening because the sensory experience of the jacuzzi is so great and because he really, really wanted to get back in the swimming pool. Also, the doctor was sitting a good 8 feet away from us. And I'm a cultural anthropologist for pete's sake. This guy has been in the US for quite some time and he is a doctor (well, a podiatrist), but his knowledge and understanding of autism (among other things) might have been formed in a cultural context so completely different from our own. And every other person in that jacuzzi probably knew and believed something different about autism. If they had all been Americans the very same thought would apply but I wonder if I would have been more outraged than I am. For some reason, after I caught my breath, I was more interested in thinking about the different levels of education, knowledge and varying belief systems and how this little bit of information, (yes, given in a really insensitive way) was being interpreted by them.

But what really upset me, more even than feeling like we had just been 'outed', was that given the time, place, and my company -- it didn't make sense to say anything to try and set the record straight. I mean: where would I begin? And there was 8 feet of bubbling water between the two of us and my two little ones who were already up past their bedtimes and badly wanting popsicles. But more than that -- I felt bad because I have so many powerful words to describe Oliver and autism just isn't one of them. And because there is SO MUCH misinformation out there and when the subject of autism does come up, there is no way to neatly package what I have to say on the subject into sound bites and yet I so badly DO want to change the way people think about it. Just like this doctor -- I'm sure he is a good person and is fully capable of changing his perspective. Isn't it part of my job to try? (I know some people will say that this guy was just plain rude and lacking in social graces. But one time when I lived in Thailand a guy was trying to give me a compliment and told me that I had big, beautiful thighs. This was the same guy who told me that I got so many mosquito bites because my big, white body made such an easy target for them. So I know that many, many things in life are culturally realitive!)

I guess the only thing I can really do is to talk when people are prepared to listen and to live a life that illustrates what I want people to know. Still, sometimes it just doesn't feel like enough, does it?


  1. Wow, I admire your restraint and comapssionate understanding...or at least the willingness to try! But, in the end, yes I think all you (we) can do is live our lives to illustrate who and what we are.

  2. His statement about Oliver was no different than his statement about you being purely American. As uninformed as he was (I am glad he is a podiatirist), it appears he was labeling for context. Although the comparison is more like "purely American, like Brittany Spears":P

    I am so sorry this happened, I always hope that if this happens to me, I would have something witty to say, but like you, I would probably take it with a grain of salt. None of us can be defined by an introduction... I hope:)

  3. Anonymous6:42 PM

    The footsie doc was way out of line. He had no business speaking about you and Oliver that way. Are you sure he's not a proctologist?
    I would have probably started off with, "Are you drunk or has the heat from the whirlpool gotten to your brain? That is no way to make an introduction. And for your information, bunion sniffer, Rainman was a movie about an imaginary person. What you just said insulted my child and insulted me."
    Then I'd push his pointed head under the churning water and hold it there while I counted to 100. Slowly.

  4. I don't know if it's entirely appropriate to your story, but as I read it, I thought of my mom's saying, "Consider the source."
    Know what I mean?
    Not everyone else's ignorance can always be our own responsibility, or we'd all be dead of exhaustion by now, so don't feel you "should" have done anything.
    Next time you see him, consider returning the favor. Introduce him to someone. "This is Dumb Guy. Have you ever seen Dumb and Dumber? Yeah, this guy is sort of like that." No, it won't help the world. It just might feel really good to you. And that is a big deal!

  5. Anonymous2:20 PM

    Ignorant people seems to play the biggest role in keeping autistics from feeling like they belong in the world.

    There are some podcasts I direct people to to educate them on autism. They can be found at www.mic.mypodcast.com.

    Midnight In Chicago makes them. They are good for autistics, parents of autistics, and for people who want to learn more about autistic spectrum disorders.

  6. Anonymous5:10 PM

    what a wonderful post! i know just what you mean. i have all the same thoughts swirling in my mind in those instances. and i laughed at the paranthetical 'well, a podiatrist.' AND i loved this line: "I have so many powerful words to describe Oliver and autism just isn't one of them."

    you are already teaching by the example of how you live your life and how you write about it.


  7. I used to feel I had to be ever the advocate. But now---I factor in how much it might bother Charlie, and make me annoyed. And just claim our space in the jacuzzi.

  8. No, it never does feel like enough. I have been in similar situations and so many times it is like my tongue gets tied and I suddenly don't know what to say. Is it shock? I don't know but afterwards I just want to scream.

    Thank you for visiting my blog. I will be back!