How Did We Get Into This Mess?: Hidden Disabilities; or, You Have No Idea What You Are Seeing by David Perry
Several months ago, Kanye West called out people with disabilities at his concert, stopping everything, demanding to know why they aren’t standing and dancing. David Perry wrote about this incident for CNN and a subsequent blog post based on emails he received from readers.
Below are excerpts from his blog post, How Did We Get Into This Mess?: Hidden Disabilities; or, You Have No Idea What You Are Seeing first published on September 20, 2014 where a reader described her experiences in public with a hidden disability:
Thank you for writing about those that have physical issues that can’t be seen.
I suffer from pulmonary fibrosis, my lungs are so scarred that breathing is pretty difficult when I’m in motion. I also have polymyositis and my muscles weaken pretty fast when I use them for anything. Up until about 5 years ago I did triathlons and was in terrific shape. Fortunately that is one of the major reasons that I am still alive today – that I conditioned my muscles and lungs so well. The problem though is that I look to be in top notch shape but my insides aren’t worth a cuss!
When I go to public places and am unable to find parking relatively close, I park in the handicap space. I’ve had a handicap permit for two years now. There have been times when I get out of the car and people give me the meanest looks. Just last week a lady approached me, she was so angry that she was practically spitting when she spoke to me. After I pulled out my iPhone, showed her my medical info with all of my conditions, the meds that I take, the team of doctors that take care of me and all the procedures that I’ve had, she was in tears. She was a nurse and knew very well how debilitating my condition could be. Also as I talked with her it became very apparent that my breathing was becoming very labored – at rest I get that way when I’m stressed and talking long. Anyway, she thanked me for teaching her a valuable lesson.
My son plays for the COLLEGE SPORTS TEAM REDACTED. Just this past weekend I attended the game, had to park far from the stadium. A golf cart drove by, with handicap sign on it for those that needed a ride. I put my hand out to signify that I needed them to stop for me, twice the people driving said no, wouldn’t even listen to my explanation. The third guy stopped because I stood in his path. I explained my condition, he begrudgingly let me ride but made it very apparent that he didn’t believe me and was pissed that I was even in his cart.
I hope many read your column and think twice about judging those that look to be perfectly fine because they may very well have life threatening issues like I do.
Well thanks for letting me vent in the middle of the night – can’t sleep because of incredible pain from all of my medical issues. I will be forwarding you column to my friends, who understand but hopefully they’ll share with others that are not sensitized to this issue.
So here we have someone who had to prove her medical condition to a total stranger in a parking lots. This is the quotidian version of the Kanye concert.
In my comments, in my email, I have dozens of these comments, these stories, in which a challenging medical situation becomes harder because of our suspicion and doubt, because even a smart nurse educated in disability issues still feels the right to demand a diagnosis in the parking lot. Not even the right – that nurse with her medical knowledge felt a duty to question, to challenge, to force proof.
I offer three conclusions.
- Disability is not a binary, it’s not a yes/no, disabled/abled. Disability takes place along a spectrum, or rather multiple spectra, as we move in and out of disability over our lives or even over the course of a day. Read more on this here.
- There is fraud. There will always be fraud. The question is how much fraud are you willing to tolerate in order to make sure people get the accommodations that they need? In the context of situations like social security, we have procedures in place designed to make it hard to get qualified. People do cheat the system, but there’s lots of evidence that people with hidden disabilities actually have a hard time qualifying, even if they need it. Any system doling out benefits will have fraud. It’s just a question of how much do we tolerate.
- As for parking. Reader 1 is angry because it’s a scarcity model. There are only a few parking spots, his mother and father-in-law sometimes can’t use a spot, and that makes him mad. It intensifies his suspicion. Instead, we need more spots, more accessible parking, more golf carts for rides, more universal design. The scarcity model causes problems.
For the rest of David’s post: http://www.thismess.net/2014/09/hidden-disabilities.html
David M. Perry writes about language, power, and privilege, especially on topics related to parenting, disability, gender, and history. His scholarly work focuses on Venice, the Crusades, and the Mediterranean world. In all cases, he examines the ways that people tell stories about their histories and identities and the consequences of those stories.
Perry is a professor of history at Dominican University. He is a regular columnist for the The Chronicle of Higher Education, and a contributor to CNN.com, Al Jazeera America, The Atlantic, and The Nation. He and his wife, a food scientist, are doing their best to raise a boy with Down Syndrome and a precocious and hyper-verbal girl.
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