I’ve heard this over and over again from people living with various conditions (e.g. spinal cord injury, AIDS, Parkinson’s Disease) living like this doesn’t make me a better person, a hero or inspirational.
This past week, I watched Stella Young’s, TED talk. An Australian comedian and journalist, who happens to need a wheel chair, she was insightful, amusing and very clear of the burden that is placed on people with a disability, serious illness or chronic condition. Disabled people are not our teachers or our doctors or our manicurists. We're not real people. We are there to inspire..... we've been sold the lie that disability is a Bad Thing, capital B, capital T. It's a bad thing, and to live with a disability makes you exceptional. It's not a bad thing, and it doesn't make you exceptional.
Young decries the posters and quotes that are made of people with various ills and disabilities, referring to them as “inspirational porn.” And I use the term porn deliberately, because they objectify one group of people for the benefit of another group of people. So in this case, we're objectifying disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, "Well, however bad my life is, it could be worse. I could be that person."
A friend with AIDS, who is a social worker, told me how she was working with a very ill patient, who said, “Well it could be worse. I could have AIDS.” My friend wasn’t about to disclose her status. However, it was upsetting to hear someone viewing her diagnosis as the worse possible thing that could happen, and were using that to make themselves feel better.
Young admits that there are challenges, but that the greatest one doesn’t come from the particularly condition you are living with, but rather society’s reaction to it. Life as a disabled person is actually somewhat difficult. We do overcome some things. But the things that we're overcoming are not the things that you think they are. They are not things to do with our bodies. I use the term "disabled people" quite deliberately, because I subscribe to what's called the social model of disability, which tells us that we are more disabled by the society that we live in than by our bodies and our diagnoses..... I really think that this lie that we've been sold about disability is the greatest injustice. It makes life hard for us. And that quote, "The only disability in life is a bad attitude," the reason that that's bullshit is because it's just not true, because of the social model of disability. No amount of smiling at a flight of stairs has ever made it turn into a ramp. Never.
Maysoon Zayid, an American comic who is living with cerebral palsy, also spoke at TED several years ago and delivered a similar message to Young’s. Their talks aren’t that long, so I recommend that you watch them. Not only is their approach humorous, but it’s the best explanation I’ve seen on why labeling people with a disability or other health condition as a “hero” or “inspirational,” is counterproductive to their living a life of meaning and acceptance, to say nothing of the fact that it’s very hard to live up to unrealistic expectations.