Ever since the now-infamous Golden Corral incident came across my radar, I knew I wanted to write about it, but avoided this because it gets right to the dark and twisty core of my insecurities. But nevertheless, it’s really important to get this out there, so here I go.
All of us have fears about our appearance from time to time, and worry about what people really think. Too this, too that, not enough this, too many of these. Many times we are our own worst critic, and assume the worst in our mind when people’s true perceptions of us are vastly different. But what if those deep dark fears actually come true?
There’s having a visible disability, and then there’s a having a visible skin disorder. I am by no means saying one is more difficult than the other, but the latter does come with it the very unique and real possibility that going out in public opens you up to the chance that people think you’re contagious. People see skin problems and associate them instantly with contagion, as some of history’s most infamous epidemics involved skin breakouts. This fear for me is no stranger and it lurks in the back of my mind every time I walk out my front door. Most of the time I keep my self in check by insisting that it’s my own paranoia playing tricks on me.
Consider my utter dismay when a few months ago my biggest fear was confirmed in a Michigan newspaper.
I mentioned it in passing in another blog post, but there was a recent incident at a Golden Corral in Michigan where a family was actually kicked out of a restaurant because their daughter had Epidermolysis Bullosa-my very skin disorder. The manager thought she was contagious, even after her mother explained quite the opposite.
According to the complaint, the manager approached the mother and asked what was wrong with her child. —First of all, hold up. It takes some serious gumption to ask a mother what is wrong with her child. Any way, carrying on—When she said nothing, that her children had a genetic skin condition called Epidermolysis Bullosa, the manager replied, “she has scabs all over, so obviously there is something wrong with her.” They were told to go “find somewhere else to eat” because they were making other patrons uncomfortable. There are fifty flavors of wrong going on here. Because being insulted, discredited, and ya know, thrown out of a restaurant, didn’t make the family uncomfortable is just one. And by the way, Golden Corral, don’t you have bigger food safety issues to deal with than a little girl with a genetic disorder? Last time I checked, norovirus actually is contagious. Oops.
The family sued for discrimination under the Americans with Disabilities Act and the case was settled with the US Justice Department for $60,000.
When I first came across this story, it was like being punched in the gut. That could have easily been me. And then I remembered, it was me.
I flashed back to a time I was traveling with my mother. I can’t remember how old I was, but I had to have been pretty young. I actually don’t remember much at all. But I do remember being on a plane (what is it with my luck and air travel?) and realizing something was terribly wrong. The flight attendant had called my mother to the front of the plane. They were whispering in hushed tones and glancing back at me, while my mother appeared to look increasingly angry.
At one point, she was on the verge of yelling, about to make a scene on the plane. I could feel my face flush. It had to be because of me. I couldn’t hear what they were saying, but sometimes, you just know.
Mother made it back to her seat and I asked her what happened,. She wouldn’t tell me. “Put on your seat belt”, she replied as calmly as she could, the anger still reeling in her eyes. “Everything is just fine”.
As I came to learn later, the flight attendants thought I was contagious. They called my mother forward to devise a plan of action of how to get me off the plane when we landed to ensure the safety of the other passengers. I’m not sure what my mother said, but it was heated and she won. They never said another word. Ever since then, I’ve traveled with a signed doctor’s note explaining I’m not a threat to anyone.
How do you put together any semblance of a positive self-image when there is the very real possibility that people will actually be afraid of you when they see you? I’m 22 and I’m still figuring it out.
What is perhaps most infuriating about the whole Golden Corral incident is the refusal to believe the mother’s authority about her daughter’s condition. In no way was she a threat to any other patron. In fact, it was probably the other way around.
It’s a constant motif in the battle against ignorance; those of us with disabilities are often discredited as knowing anything. We aren’t to be believed. Clearly, everyone else knows better.
So allow me to make one thing perfectly clear:
I’m not contagious.
You can’t catch it.
One thing the Golden Corral taught me is that while ignorance is inevitable, it is not without its own consequences. The ADA swooped into action and justice proclaimed a clear wrongdoing. Knowing this, perhaps one answer is to just take a deep breath and step outside my door. In this battle against ignorance, the key is to have the galling audacity to be in public anyway. If I make people uncomfortable, they, not me, will have to find a way to deal with it. Every day I go to the grocery store, I win. Every day I go out to eat, I win.
I’m not contagious, I promise.