Over the weekend, I did some light traveling to visit family. While it used to be pretty common for me to make an 8 or even a 12 hour drive, my body now can’t handle much more than a few hours. As a result, we’ve taken to staying at hotels for anything more than a quick trip to Portland or the coast. This trip was a good reminder of why disability awareness is still a huge need in the U.S.
We’d prepaid and after the clerk looked up our reservation, she says, “Would you like a room on the first floor since you have the cane?”
“That would be great,” I say. It’s been a long day. Not having to fight stairs would mean that I might be able to leave the room before morning if I want to.
“So did you sprain your ankle?” she asks as she works on the computer to switch the room.
I’m used to this question. People see a 35-year old woman with a cane and assume it must be some temporary injury. I think it makes them feel better somehow. This is why I don’t hesitate to correct the assumption; people need to know that whether it’s temporary or permanent or even terminal, disability does not mean that a person has to stop living or feel bad about life. “No,” I say, “I have an autoimmune disease.”
She switches the reservation, gives us our keys, and rattles off the hours for pool, breakfast, checkout. My husband takes a key, and he and our daughter head out to the car to grab the suitcase. I turn to go to the room thinking that I’m tired enough and I hurt enough that I probably won’t want to leave the room anyway.
I get about 5 steps from the counter when she bursts out, “So what kind of autoimmune disease? There are a lot, you know.”
“Mixed connective tissue disease,” I say and turn away again.
“Never heard of it,” she replies.
Curiosity doesn’t bother me. That’s normal. But here is the tone of voice that says, “Do you really have a disability?” Because, let’s face it, having a disability is downright cool and we all want to pretend we have one. Consider these benefits:
- You get to walk around with a cane or sit in a wheelchair and everyone knows how easy that is, especially when you’re carrying luggage or groceries.
- You get to park closer to buildings and the amount of pain/effort/breathlessness that you have to endure in order to get the special parking permit is a small price to pay for that convenience.
- You get to use all of your sick leave and vacation time on doctor’s appointments and then take unpaid leave when you’re actually sick.
- If you can’t work and are lower income, you get to tell your life story, give full access to all of your financial records, and live on a pittance without building any assets so that you can get the supports that you need.
Best of all, you get to answer stupid questions and try to justify yourself to random people that should really just be handing you a key and shutting the hell up.
This is only partly an individual problem. It is mostly a societal problem. We presume that someone with a disability is either totally disabled or not disabled at all. If someone needs just a little bit of help—for example, a work accommodation that allows them to work flexible hours so that they can rest for a portion of the day—they are deemed to be ‘faking it.’ If someone has a chronic disease that flares so that they seem okay one day but are almost completely incapacitated the next, they are deemed to be ‘faking it.’
Now, I’m not saying that there aren’t people out there who try to take advantage of others and get benefits that they don’t necessarily need, but the number of those people is so small that I wonder why the rest of the disability population has to climb huge mountains to reach a place that has no real view.
Like, for example, a cheap hotel in a small town in the middle of nowhere.