Shortly after I began driving, my pediatric gastroenterologist gave me the paperwork I needed to obtain handicapped parking accommodation. In my state, drivers have the choice between permanent handicapped license plates, or a removable tag that hangs from the rear view mirror. A a teenager, the choice was easy: removable hang tags allowed me the ability to choose when I went into “disabled mode” publicly. Having illnesses that are invisible can be a blessing and a curse.
While it varies depending on my current disease activity, I generally only use my tag sparingly. Visiting the mall on a busy Saturday, I might use the tag to spare me the walk from the very back of the huge parking lot. I might choose to use the tag in situations where I expect to need it for my return to my car, for example, after a late night dinner when my stomach will likely be very grumpy, or when I’ve hit a wall with my fatigue. assault
I’ve actually been very lucky to avoid parking lot confrontations with strangers, but I hear stories all the time of people being hassled over using handicapped parking when they “don’t look sick.” The only harassment I’ve experienced that stands out in my mind was unfortunately by a policewoman at a theme park parking lot. I was visiting with two friends, who were already uncomfortable about using the handicapped spot (years later, we are no longer friends). After a few feet we were stopped by the cop, which made my friends even more uncomfortable. Luckily, the tag had my name printed on it, and I had ID, which I offered to show to the police officer. She decided that wasn’t necessary, but I wish she hadn’t hassled me in the first place. I was more shaken by the way my friends reacted and the fact that I needed to stand up for myself to the cop, who ostensibly was there to make the park safe and enjoyable for everyone (myself included). Instead, it was a demoralizing was to start the day.
Recently I spent a few hours searching for my idea of the holy grail: comfortable shoes that would stand up to my walk to the train and the 7,000 steps I average in a day. I felt like Goldilocks: those shoes were too ugly, those weren’t versatile enough, those wouldn’t accommodate my narrow heels, those would cause painful blisters on my toes, those were over $200. When I made a trip to the mall to return 3 pairs of shoes, I couldn’t find an acceptably close parking spot, but there was a handicapped space. I parked there and walked into the department store. I tried on several more pairs of shoes that day, but still didn’t find anything worth buying.
The parking lot was crowded when I left the mall. I slunk back to my car, feeling defeated, exhausted, and a little shaky since it was time for my dinner and I’d run out of purse snacks. Years after receiving my handicapped parking credential, I’m still self conscious about it – hoping to avoid those nasty comments from strangers. I climbed into the car, sitting on a foam cushion with a cut out to relieve pressure on my tailbone, and adjusted my heating pad behind my back. That’s when it struck me. I’d spent hours searching for acceptable orthopedic shoes, was using two devices to make driving more comfortable (not to mention the bucket of supplies I always keep in the backseat in case of IBD accidents), yet I was still feeling anxious about being harassed for not deserving to use the handicapped parking space.
People with invisible illnesses are victims of an ableist society. But it’s especially sad how that conditioning worms its way into our own minds. I don’t want to walk around brawling with everyone who questions me, but I do want to be comfortable in my own skin. (It’s bad enough that illness makes me physically uncomfortable.) The aids I use are invaluable to me and allow me an improved level of freedom and access , but I’ve become so accustomed to them that they are nearly invisible to me now. In some ways that’s a positive – I don’t want to constantly feel different and unable, but sometimes the validation I need becomes invisible too.