Inspiration. When you live with a disability, this word is dreaded and cringe-worthy.
But isn’t being an inspiration a positive thing? To many in the disability community, the answer to this question is, “No.” There isn't anything inherently wrong with being an inspiration. However, as a society, we categorize people with disabilities as inspiring just because they exist. We don’t get to know them and their individual accomplishments. They are inspiring because they get up in the morning, go to school and work, and do ordinary tasks in a different way.
This is called inspiration porn, a term coined by the late disability activist and comedian, Stella Young. I highly recommend watching her short TEDTalk on the subject; it’s funny and real. Young explains we’ve been told that life with a disability is a “bad thing,” and living with it makes you “exceptional.” It doesn’t. For the last 40 years, disability activists have ascribed to the social model of disability, where our limitations are not defined by our bodies or diagnoses, but rather by how society views us and caters to our needs as individuals. Under the social model of disability, people with disabilities are an important part of human diversity and instead of curing them we should focus on creating universal access in all aspects of society.
They were standing up solely because I was sitting down.
Our misconceptions about disability are further perpetuated by images that objectify people with disabilities for the benefit of people without them, a new form of pornography. For example, we’ve all seen motivational posters in a doctor’s office that feature a child with prosthetic legs that says, “What’s your excuse?” Here, a person with a disability is being used to motivate a person without a disability. In this context, a well-intentioned comment can actually foster a sense of pity.
For example, somebody once told my husband Greg, a fellow wheelchair user, he was inspiring when he was reaching for the milk at the grocery store. They said this solely because he was disabled. In a sense, they were saying, "If I were disabled like you, I would never leave the house to buy my own milk." To which I would say, you are never fully aware of how much adversity you can handle until you are actually forced to do so.
Accomplishing everyday tasks or doing ordinary things that able-bodied people do (like buying milk, going to school or getting married) are not inspiring. And to categorize them as such lowers the expectations we have for people with disabilities. This is problematic in a lot of aspects but particularly when fighting for equal opportunities in education and employment. When I was in high school my caseworker patted me on the back and said, "Good for you, you got straight A's this quarter." She wasn't expecting that a physically disabled student could get straight A's. And after the first quarter it got weirder and weirder each time she said it. She had such low expectations of me that even after two years of straight A’s, she was surprised at my achievement.
Being an inspiration doesn’t always have a negative connotation either. All people, disabled or not, can be a positive source of inspiration, if you take the time to actually get to know them and their achievements. For instance, I received two very different standing ovations, one at my high school graduation and one at my law school graduation. In high school, I spent over ten years with virtually the same students everyday. After my spinal cord injury, the local community lifted up my family through the good and bad times. Receiving a standing ovation from a group of people who actually witnessed what I go through every goddamn day felt right to me. But upon law school graduation, the standing ovation felt different. Sure, my family knew the challenges I faced, and even more than a handful of my classmates did too. However, when the whole stadium of 4,500 rose up as I crossed the stage, I was filled with embarrassment. Most of the room didn’t know what I went through to get to this moment. They were standing up solely because I was sitting down.
It is important to remember how we think about people with disabilities so as not to offend and perpetuate pity or negativity. Not using the dreaded “I” word so pervasively is a step in the right direction.