Several days ago I received a request to join, along with other disability bloggers, in on the "Blogging Against Telethons" protest day - today. Talk about hitting the right buttons with me, as someone who spent part of his youth in protest marches. Pro-peace, pro-women, pro-gay, anti-discrimination, anti-establishment, anti-pasto ... yep, I'm your guy. Even more, the MDA telethon always bothered me. Even as a child, it bothered me. Deeply.
I was a sensitive kid, which was a handicap (word chose carefully) itself growing up male in Salmo and led it various other traumas, but I remember going to the Calgary Stampede and paying 25 cents to go into the 'Freak Show' and getting only part way through before having to leave. I threw up behind the tent and hid myself away for hours trying to rid myself of what I'd seen. The 'Freaks' didn't bother me, but sitting there being on display for money seemed to be to be horrific. I hated being part of the crowd, wanted to apologize for having looked, wanted to crawl under the earth for even having thought about going into the tent in the first place. I got this sense from watching the telethon. Having Tammy or Timmy - poster children didn't even have their own names, they were given names that were marketing friendly I guess, anyways having them come out for public view, for public sympathy caused me to feel actual nausia. Again, to be clear, not at the fact of their disabily - but because of the public display, for money. Then on, I never thought about the telethon. Didn't watch, joined in when others complained, but didn't watch.
Never thought much about it again until I was working for West Toronto High school as a classroom aide with students with physical disabilities. Three boys in the classroom had Muscular Dystrophy. I had started mid-year and after the summer break came back a few days early to help get the classroom set up. I thought for the first time in a long time about the telethon, there were three kids with MD in the class. What were they feeling as their disability was being broadcast over the airwaves that final weekend before school? Two of the boys, brothers, were very shy and always seemed fragile. I knew I couldn't ask them. But the other boy, Tom, was quite a wit. I figured he'd be up to it.
When he came to school there was much activity. A couple days later we had some time alone together and I worked up the courage to ask. So, I did, "So, Tom, I'm curious, what do you think of the Jerry Lewis telethon?" He looked at me like I'd kind of offended him and I immediately began to apologize. "No," he said, "I've been waiting for someone to ask me. No one ever has."
"I hate that damn telethon," he said, "first God gives me Muscular Dystrophy and then Jerry Lewis claims to have boffed my mom - talk about adding insult to injury." We both laughed. He went on to explain that he had no difficulty with raising money for research, was even grateful that they did it, but did they have to present his life like it was over before it started? Did they have to evoke real pity? Did they have lie about what it was to have a disability and be in a wheelchair? Once he got going it was hard for him to stop. When he was done he said, "That felt good, thanks."
We never talked about it again. And again, the telethon left my head.
My Mother-In-Law, Ellen Jobes, was a telethon addict. She got herself set up with a big mug of beer and clamato juice (I kid you not) and she'd sip at it while watching the 'thon'. She stayed with us over the Labour Day weekend one year and I expected her to be plopped in the chair with a bit of foamy red over her upper lip watching Jerry. I had resolved to say nothing about it. She didn't, at this stage of her life (really, really old) need me yapping at her. But I was surprised when I came upstairs to find her not watching telly at all.
I asked her why she wasn't watching the telethon, she said, "I got annoyed last year watching it and I don't want to watch this year." I was curious so I asked, "What annoyed you?" She explained that she needed her cane full time now and sometimes she needed a wheelchair to help her get around airports and was working up to needing a walker. "When Jerry started to go on and on about kids being in a wheelchair prison, I knew it wasn't true. The wheelchair isn't what I'd thought it would be. It wasn't what I feared. It was just something that helped me get around. Jerry shouldn't lie about that." That was it for her, at least for then, she went back to watching the telethon but for 'entertainment'. However, one year, Jerry lost a viewer.
Then I forgot about it again. I don't watch it, no one I know does, and I was surprised to get a request to protest it this year. Do they still air that damn thing? was my first thought. Then I thought of Tom and of Ellen and of those people in the tent in Calgary. And it all came back. Differently this time because I'm in a wheelchair. So ...
This blog joins in the protest about any use of disability to engender pity, reinforce prejudice, cause ridicule or create barriers to understanding - this would include, of course, the MDA telethon.
For more information on today's protest ... or to find other blogs participating, please visit http://www.karasheridan.com/ and you'll be guided through the protest day.