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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