To Help Me Remember

Note to Readers: Most times my target audience for this blog is you the readers. Sometimes I have more than one thought for a blog and write it here and send it elsewhere. But sometimes I'm writing because I want to record a moment for myself and I invited others to read in. This is a memory I want to be able to come back to, when I need it, I want to remember this moment and the people I met. There are dark days when I need to encourage myself. This blog is written for the 'me then' who in the future may need to remember what's written here. You are 'of course' invited to read along, and comment if you like.

I spoke at the plenary session of the conference. It was on the second day of the conference, which made the first day one of waiting, of fretting and of anxiety. On Monday afternoon I asked Joe to go over to the Constellation for a tour so I could write my speech. I'm saying some new things - having a disability has changed how I see the disability industry - and I wanted to give thought to the "how" I put my message together. A keynote or a plenary session are a bit different than the other sessions and they exist for a particular reason. They need content, but they also need to pick people up, to motivate and inspire. When I do this, I plan content first and then pack 'motivate and inspire' around it. I was ready, but nervous.

I was thrilled to see that they had a beautiful wide ramp right up to the stage. I got up, got myself in place, tried to forget that there was "at least 6 inches" between my chair and the steep drop to the floor behind me. I'm not a fan of heights and I'm even less a fan of ledges. But I got up, waited for my cue, and then began. I noticed at various parts of the presentation that there were a lot of folks with both or either physical and intellectual disabilities in the crowd. Some applauding in moments where no one else was. I feel cheered on.

Finishing to a standing ovation was gratifying.

But I never know what those mean. I used to think that they meant that people got it and agreed with the message. But then the feedback is often: you kept me awake! you were very funny! that's going to upset my boss! I liked the stories. Now, don't get me wrong, feedback is feedback and I like it. It's just that sometimes I'm not sure where the 'message' fits into it.

This time, however, I had seven people with disabilities, I counted, come to speak to me afterward. One woman with an intellectual disability said, tragically, "I wish they would let me be proud." I knew that she'd heard. I knew that she understood. I knew that she was taking something away that may not change her as much as it changes those around her. At least I hope. Another fellow with an intellectual disability said, "thank you for saying that having a disabilities doesn't mean people can bully you," at this point he started to cry and walked away. My heart was in my throat wondering how long he'd waited for that message. Of the two women with physical disabilities one had a very private conversation with me about the work that she needed, and I echoed, to do to first get rid of the negative messages about disability and difference that she grew up with and then the effort it takes to stay free of the effect of the constant flow of messages that damn difference. It was a conversation that was important for me to have - I needed to hear what she said. Later, at the food court another woman came to talk to me about the dual prejudices that come when one has a disability and one is a larger person. We talked about the messages behind the questions we get.

I left feeling that I had been heard and that the time I spent in the room, while Joe was on the Constellation, had been important and productive. It allowed me my own time to gaze into the stars and conjure up the courage to say what I wanted to say.

The standing ovation was nice. What was nicer still, was to know, that it mattered. If I managed to say a bit of what people with disabilities want me to say to those who support people with disabilities, then I'm managing to stay true to the message and the mission.

I left encouraged and inspired.

Stay the course, full steam ahead.