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.
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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.
I remember /Children of Courage/. The sheer hideousness of it.
ReplyDeleteOh, they'd trot out the kid who really had shown presence of mind in a sticky situation. But then there'd be the kid whose claim to 'courage' appeared to be that he was in a wheelchair, of all horrendous things, and didn't spend every day revenging himself on the cruel world which had put him there. That he was - miraculously! - capable of loving and laughing, Even Though he was Confined (etc.).
And I watched. I don't think I saw through it for a minute: I just sat and hated. Hated these kids who seemed so effortlessly to be good, and magnificent, and praised. Who seemed to earn their goodness so lightly. Whereas I spent every hour working my socks off to be just a little less evil. And hated my evil self for hating them.
One isn't supposed to say that sort of thing! And perhaps it isn't relevant: it *isn't the disability rights angle - it took best part of 20 years for me to begin to appreciate that. So patronising. So confining.
I shall probably regret this.
Interesting post today. I had not really thougt about this in awhile. I use to watch the Jerry every year and actually answered phones one year thru the Jaycees and ABATE in my riding days.
ReplyDeleteWell that was all BN as we say around here...Before Nash....I have not watched much since. I have learned that the last thing I want is for anyone to feel sorry for me my family of my son. I think this has been driven home over the years as it seems the first thing people say when I tell them Nash has Down syndrome is I am sorry....and it use to really piss me off...now I just look kinda funny at them and ask why. Usually invokes an interesting chat.
So with all that in mind I will not turn on Jerry today and will try to think of ways we can channel all the corporate money in a direction that will really get some things done.
peace.
Thanks for bringing our attention to this. After reading your post here, I've now written up a blog post of my own about it at http://reunifygally.wordpress.com/2007/09/03/why-deaf-people-should-boycott-jerrys-telethon/.
ReplyDeleteI just lost a dear friend to a form of MD. I read your post and thought about Manuel. He'd of called them crybabies and told them to get over it. He had no patience for that mess. Where do they round up these folks anyway ? And, if I may, I'll pass on one of my lessons from Manuel. He insisted on carrying file whenever we had to have it at an appointment or whatever. He knew the person with the file has the power. We now have a semi-official policy that the person we are with is always asked if they would prefer to carry the all important file.
ReplyDeletesuch a powerful story about your interaction with Tom-I'm so glad you asked him what he thought. He had the chance to say it for once and be heard:-)
ReplyDeleteI linked here in my post, FYI.
ReplyDeleteAs I read the blogswarm I notice the personal stories seem to be the antidote to the Freak Show mentality of tents and telethons. At first my fear was that a rallying cry of "No pity!" would result in entries of no authenticity.
ReplyDeleteInstead your stories are powerful and healing. What a portrait of violence done to compassion you reveal in recalling the exploitation and victimization witnessed in a tent. The response by "baba yaga" is a profound testimony to the violence done to mindful viewers who sense the deceitfulness of kids portrayed to be "so effortlessly good, and magnificent, and praised" in the televised inversion of the circus tent.
Thanks, Scott. I needed to hear that I wasn't absolutely wrong.
ReplyDeleteThe ghastly thing is that I wasn't mindful. It took years, and personal experience of the violence inherent in pity, to begin to realise the deceit, the inverted freak show. It took others to make me realise it more fully.
By the way, the biggest complaint about me when I was a kid (as far as I could tell at the time anyway) was that I was "overly sensitive". I'm now not so sure that's an awful thing.
ReplyDeleteWell I admire people who have the guts to fight for the right and just causes!
ReplyDeleteI'm glad I had the chance to read your blog once again.
what a interesting history, I mean many people don't know very well this and how work, but is so easy understand how really is this situation.
ReplyDelete