Friday, February 21, 2014

On the other side

   I recently had the experience of what it must be like for a stranger hearing my speech. What was most eye-opening and startling were the strong feelings it evoked in me.
   I was at a weekend gathering, and the keynote talk was given by someone who, like me, has impaired speech stemming from Cerebral Palsy. There was no speech device used, and no one repeated what was said. (The text of the address was widely distributed after the weekend.) Although the speaker’s speech isn’t as impaired as mine and although I had understood and conversed with the speaker at other gatherings, there were large sections of the talk I couldn’t make out.
   Much to my surprise, I found myself feeling quite angry. Not just sad and confused, lost, but downright mad. In a case of sharp irony, with the talk being about inclusivity, I felt excluded - and I felt that the speaker was excluding me. (Let me be clear: I am not naming names, because my purpose here is not to blame, and I was able to read the text of the talk later. My purpose here is to reflect on how I felt.)
   I felt that I have always tried hard to make sure people understand what I say - having people repeat what I say, using speech devices, etc. - and here the speaker was not seeing to it that I understood what was said.     A bit later, I thought that, rather than sitting there feeling excluded and angry, I should have spoken up. I should have asked for someone to repeat what was said. Or maybe I should have asked for one of the few copies of the talk handed out for those who were “hard of hearing or non-English speaking” (which I’m not).
   But it wasn’t and isn’t that simple. I may have been rude if I had spoken up. After all, no one else spoke up. Was I the only one having difficulty? Or were the others wanting to not be rude?
   And how does this all fit in with the theory, which I subscribe to more and more, that disability is a societal issue, a problem for society to deal with, providing more easily obtained services and accommodations, etc., rather than a problem for the individual to handle? Does it go with the idea that disability is hard because society makes it hard - or that society makes disability harder?
   If society did indeed take on the responsibility of accommodating the disabled, making disability less hard, if not not hard, perhaps it would be more my responsibility to understand what the speaker was saying. Perhaps I would have been trained, as I have been in arithmetic and grammar, to have the skills and the patience to do so. Perhaps I wouldn’t have to make so much of an effort to make sure that people understand what I’m saying.
   I want to add, as an aside, that the weekend involved flying and that I couldn’t help noticing again that, ironically enough,  the Transportation Security Agency has gone out of its way to accommodate those in wheelchairs, with a separate area and agent for the pat-down. I thought it was pretty funny when the agent did a very thorough job of checking me and my chair out on my trip home in my Jesus-hippie overalls with the “Another hippie for peace” patch.


  1. Thanks, John, for this post. It takes courage to speak out, that's for sure. One of the gifts I've received from you is permission to do just not feel like there's something wrong because I need to ask "Could you repeat that, please?"

  2. I to want you to repeat that, and like to have understanding.
    However, the bogged down process can be tedious and leave me frustrated, but the more I think of you and your feelings let me feel the need for my patience to be higher than before.