Tuesday, November 10, 2009

"She drives her chair very well!"

I was interested in using the therapy pool at a nearby YMCA. On the phone they suggested that I should come in and have a tour with one of the specialists. I did just that. The specialist was a cheerful middle-aged woman who had one too many cups of coffee that morning. As usual, my aide did a two sentence explanation which goes something like, "She's got CP so she can't talk, but she can hear and knows what you're saying. I can decipher what she wants to say too so I'll speak for her but you can talk directly to her," etc. This sometimes works and sometimes doesn't. This was a case where it doesn't. So we three left for the tour and the woman kept commenting on how well I drove "just like a race car driver!" I looked at her like "thanks......". I wanted to talk to her about the logistics of going to the bathroom/changing/etc if I had male aide with me (I don't discriminate against gender when I hire). She acted pretty shocked that I would let a man see me naked. Although she talked to me, she directed all the important information to my aide even after my aide explained that I am a college graduate. Throughout the visit she was a little touchy feely, but right before I left I got the full experience. She grabbed me and hugged me and patted my head and was saying things like "It was sooo great to meet you!! You come back soon!" which looks nice on paper but sounded reaaally condescending at the time.

Oh YMCA, you are supposed to be cool about this stuff. Like everyone, she meant well but damn, it was annoying.


  1. Wow, how utterly obnoxious. Perhaps you could invest in a wheelchair-mounted rocket launcher?

    Oh, and I love your blog, by the way! I used to be a personal care attendant for a former lawyer with ALS, who only had voluntary control over her eyes, cheek, and one finger, but who ran her entire household with amazing efficiency using a letter board and, later, an eye-gaze computer. Once she was hosting some prominent modern artists (whose names I probably shouldn't mention) at a grand gala fete in her apartment, to celebrate their new large-scale concept piece. She was in charge of everything, from choosing the menu to hiring the waitstaff to picking the decorations and music and entertainment, et cetera, et cetera. At the end of a fantastic evening, one of the artists was led over to my employer, who told her via her aide what a big fan she was of her work. The following is verbatim.

    Artist: She's beautiful! Can she... Hear me?
    Aide: Uh... Yeah.
    Artist: Can she... See me?
    Aide: Yes.
    Artist: Can I... Touch her?!
    Aide (looking at my employer for what to do): Uh, I don't think --

    But it was too late. The artist was running her hands creepily over my employer's wrist and forearms, and my employer was shooting her daggers of fiery death from her eyeballs. Not that the artist noticed, of course. We all laughed about it later, but imagine how humiliating, when you're the host of an extraordinary event in someone's honor, and they treat you like that. Arrrgh! It makes my blood boil.

  2. My 3-year-old son uses a powerchair due to spinal muscular atrophy and we can't go anywhere without strangers commenting what a great driver he is. Even though well-meaning, it's highly annoying (1) to all of a sudden be public property when all we want to do is get a cup of hot chocolate, and (2) to deal with people's amazement that my son can navigate his chair himself. When I hear the next "wow, he can really get around in that thing", I'm tempted to start saying "Yes, your kid can walk pretty well too."

    And it's not a race-car, it's a wheelchair. It's an amazing and wonderful piece of equipment that gives independent mobility. It doesn't need to be anything else in order to be cool. Yeah, race cars are neat, but all things being equal, I'll take a Permobil any day.

  3. I read about the various behavior people have towards you and it amazes me how ignorant and rude some people can be. I love reading other people's comments to your blog and reading more about other people's experiences.

  4. ughh... eva...

    a race car driver? seriously... had i been with you that day i may have made vroom noises every time we moved..


  5. Ak! Why do people assume if you have a disability you are perpetually five years old?

  6. So recently I was introducing a foreign student around. And her accent was thick.

    The thing I noticed, was that people were treating her like she couldn't understand her. <.< Even though she could clearly understand english, even if she was having trouble pronouncing some things.

    Made me think of you.

    Sounds like the lady was overcompensating. So have you gone back to that Y? How is it?

  7. When someone makes a comment about my "race car" or suggests I accessorize with a battering ram and spikes on the wheels, I chuckle a bit and mutter "How original!"

  8. Ugh. I like NYC's answer. My boyfriend is over 40 and still gets these condescending comments like, "Wow, buddy, good driving." SIGH.