So, while Bill Peace is hammering away at the concept of "inspiration porn" and all of that over on his blog, I had my own little experience to deal with, or think about is it were, just yesterday.
A co-worker was enthusing about Justin Hines. Justin Hines is a Canadian musician with a rare disease that requires him to use a wheelchair. He has severe scoliosis and lots of issues related to his disability.
She wasn't so much about his music, but about how he has overcome his terrible life circumstances to rise up and be a musician and live his dream!!! She was terribly impressed with him and very inspired.
So, I did a little google search and found this article about him...the stupidest shit ever written by a journalist and believe me, I use that term loosely here..a really disappointing piece for the Globe and Mail. This is the zinger bit, but you have to love Hines' response...
Well, I am not a fan of Justin Hines' music. I don't care if he is disabled. I won't listen to it on purpose because my kid is disabled and that I feel some deep connection because of that. Believe me, that man's name (and the marathon guy) has been thrown around in my direction more than once. I am happy he is living the life he wants to live, though, and I love his attitude, based on this lowly article. Cool guy...totally gets it...must be frustrated as hell that his disability is often front and centre rather than his music.
But, this isn't about Justin Hines actually. It's about me and the co-worker and all of that. My co-worker is a really nice woman, just like I think most people are really trying to be good, decent people. And I know that, for the most part, I live in a community of people who are privileged in many ways. For these people, when they see someone like Justin Hines, they see a situation in which they cannot imagine themselves being and for which they feel they would be woefully inadequate to deal with (kinda like what I would feel like living in the Congo). So, they are inspired. They are, for a moment, reminded of their very lucky, lucky lives and that the stupid shit that they obsess over that stops them from moving forward is just that: stupid shit. It gives them a moment to re-evaluate and hopefully, to do something positive. I have seen this happen. I don't think it's so bad.
But it's still weird. It was a weird conversation for me. I was annoyed, though worked very hard at hiding it. I tried to figure out what bothered me about the whole thing. It was, first, the assumption that Justin Hines' life sucked because he is disabled. By extension, all people with disabilities have shit for lives. The ones who live "normal" lives are considered the sort who have achieved "their dreams". So, why the hell does a typical life become a dream for some? Is it Hines' disabilities that make his life "hard" or the world he lives in that makes a typical life almost impossible to achieve?
Then it just turns around to me and my life with the kiddo. There is no question that my life is complicated by the fact that my daughter has severe disabilities. It's no picnic some days, that's for sure. But, what I do every day is "the norm" for me. I am used to it. Got used to it over a period of 13 years or so. I do it every day because I am her mom. That's it. I don't feel the "sacrifice" or the "call" of a special and different life and "greater" life. It's a life. It's the one I have and the one Sophie has and we are to do it together apparently. So, I deal. I don't feel particularly inspiring. Some days I am downright pissy. I suppose the corollary to this whole "inspiration" thing is that it doesn't allow for a lot of human frailty. It doesn't allow for the days when you hate your life, or get angry at your kid who is not at fault, or want to disappear or are too tired, or want to tell everyone to eff off with their admiration in tow. You always feel like you have to rise up to the occasion. In the end, you know, all we...we parent caregivers...want is help to get the job done. That would mean more to us than admiring glances and talk of inspiration. Boots on the ground, you know?
I guess, in the end, I was as understanding as I could be, but the whole thing left me rankled. I don't know where true inspiration comes from...the sort that gives people new ideas and the force of will to change and grow, but I am not sure that "overcoming disability" language is a good go-to for that.