Wednesday 3 September 2014

Inspiring?


What does it mean to be inspiring? It's a word that gets thrown around so often that I feel like it's pretty much lost all meaning. 

I've been thinking about this a lot recently after listening to several podcasts that touched on the topic (brace yourself for some rambling). Each podcast could have probably spawned their own blog post but since they're all on inspiration, I thought I would mention them all together.

A summation of the podcasts:  

1) A CBC interview with a man who is visually impaired and is planning a kayak trip down the Colorado river. The entire interview is worth listening too but my favorite quote was when he said (roughly quoting), "People always overuse the word inspiration. A blind person walks across the street and doesn't get hit by a car, and someone's like 'wow that's inspiring.' I think it's meant well and nothing against anybody but when you're disabled, you feel like sometimes people are using that word to separate themselves from you. They're saying 'you're the inspirational one', and you're over there and I'm over here. I think this idea of living a no barriers life is not just delegated to people with disabilities, we all have this capability to overcome our barriers. "

2) The Stuff You Missed in History Class (SYMIHC): Deaf President Now podcast. While the actual podcast is the story of Deaf President Now (a student protest in 1988 at Gallaudet University), the hosts prefaced the podcast by talking about how hard it is to find stories about people with disabilities where they are doing their own thing and aren't being portrayed as overcoming a barrier inspirationally for the benefit of those without disabilities. 

This is basically what they said (again, roughly quoting): "It's incredibly hard to find a story about a person with disability or disability rights without the inspirational overtone. There is a whole thread about overcoming hardship but it's presented in a way where it's an uplifting heartwarming tale told to non-disabled people about a disabled person. Some stories seem very positive initially until you stop to think about it and realize that it sets up people with disabilities as 'other' and having to overcome things to be equal and that's not how it should be. We have nothing wrong with inspirational stories, such as the story of the first woman to become a M.D. in the USA. It was a hugely inspirational event but today, telling a story about a woman going to medical school would be a pretty boring story about a woman going to medical school. But if 'we' (meaning the media or public) told a story about a blind doctor in 1849, the tone would be fairly similar to the story of a blind doctor in 2014. We want stories that break the pattern of setting up people with disabilities as inspirations for others and focus instead of people with their own agency and identity."

3) The BBC disability podcast (the 'inspiring discussion' starts at minute 38:00 minutes) where they interviewed a man with cerebral palsy who wrote a show about how people call him inspiring for dressing himself or having a job. He finds this super annoying (as one would). The entire discussion was filled with sarcasm which I thoroughly enjoyed. They were pretty rough on inspirational speakers but one woman went a little easier on people by saying "there is a huge difference between someone saying, 'you made me think about how I live my life and how I can do things differently' versus a patronizing, 'I can't believe you can go to the toilet by yourself, how inspirational.'" They ended the conversation by naming the person who inspires them and most of them named someone with a disability. 

The main theme of the three discussions was that there is a huge tendency to see people with disabilities as ‘other’ and it’s very easy for their stories to turn into an inspirational saga about how the person learned to live a ‘normal’ life. I think this happens more to people with people with developmental disabilities (autism, down syndrome, etc.) or physical impairments (visual impairments, quadriplegic, etc.) and less with chronic illness but to be honest, I’ve still had my share of being 'inspirational' for mundane things.

Sure, people with disabilities may have moments of inspiration for others, as may people without disabilities. The problem is when a person becomes inspiring just because they have a disability. Personally, I have no problem if people say David and I inspired them to start cycling again because we cycled across Canada. Because yes, that was pretty awesome. And really hard at times. We had to find all of our determination and self-motivation for it to happen which I still use to inspire myself at physio by telling myself things like "you cycled across the country, you can handle five more minutes on this stationary bike" or “what’s the matter with this stationary bike, at least there aren’t mosquitos biting your eyelids.” So sure, if you want to call me inspiring for that, I will accept it.  

What I have trouble accepting is being ‘inspiring’ while I'm living my day-to-day life. Honestly, all I do most of the time between physio and doctor appointments is read and watch TV. That is not inspiring. That's boring. And a bit depressing. I don’t feel as though I’m doing anything different than anyone else would in my situation. In fact I probably do less because some people who are listed go give talks on the importance of organ donation while I sit at home at read about fantasy druid worlds. 

I realize that the other side of my 'stop-calling-everyone-with-a-disability-inspirational' argument is that people have a right to find inspiration wherever then can or want. And if someone finds the fact that I read a lot of books while I wait for a lung transplant, I guess they can go ahead. As long as it's not patronizing like the woman in the 3rd podcast stated, there is really no harm in it. The problem happens when the person with a disability exists solely for the inspiration of others. No one wants to exist to be a life lesson, or to teach people how to love and live life to the fullest or whatever. People have a right to be their own person with their own goals and own successes that may have nothing to do with you whatsoever. 

I think I'm just so tired of the endless Upworthy stories on Facebook and elsewhere about someone who is an inspiration to us all because they got married 'despite' having an amputation or started a business 'despite' having Down syndrome. Who would have thought those things are possible!? Those stories are only there to make other people feel good about themselves. I still really like what the host said from the SYMIHC podcast about how the first woman who became a doctor was inspiring. She broke down barriers and dealt with misogyny and was probably socially ostracized. Now no one thinks twice about female doctors. So why isn't it the same for people with disabilities?

In conclusion: I'm not saying that we should stop being inspired by things. I just want stories about people with disabilities to change to be more about the actual person and less about them overcoming something. So the next time you hear one of the 'inspiring person with disability stories, think about the person. Does the story give them autonomy? Do they exist for reasons other than making non-disabled people feel good? And most importantly, are they truly doing something inspiring or are they just living their lives as human beings?

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