How Disabled Am I?

I wanted to go to a support group for joint-pain sufferers a couple weekends ago, but it was cancelled at the last minute, and the next one is happening at the end of the month when I’ll be in Texas for the NEA Leadership Summit. Unfortunately, that means I am still a loner in the club that is Americans with Disabilities, and I don’t know what words are accepted in-group. I know politically I cringe when person-first language isn’t used. But I’m on the inside now, and that means I frequently skip the syllable-laden person-first language when describing my condition in a non-political setting. I’m not a person with a disability, I’m disabled, handicapped, lame, gimpy. I haven’t yet used the word “crippled” to describe myself since in my mind that is something visible, but I do say I worry about becoming crippled and I do describe my pain at times as crippling. I cringe when I’m called “differently-abled” — an extreme of political correctness that simply goes too far. If the only difference in my ability is that I can’t do what the majority of the population can do, then I am disabled, plain and simple. Differently abled implies, to me at least, that while some of us may have difficulty walking, others of us must be able to fly.

I’m certainly not the first to struggle with adjectives to describe my condition. I’ve been teaching Nancy Mairs’ essay “On Being a Cripple” in my AP class for nine years. It’s one of my favorite essays in our anthology. It’s possibly Mairs’ fault I cringe so much at “differently-abled” as she rails against it herself, but I did not make the connection to her essay the first time it was used to describe me (used by my best friend who absolutely meant well, I should add, which is why it didn’t hurt. It just clearly wasn’t going to be my choice to describe myself).

At the airport recently, my seat was moved so that my husband and I could sit together. The airline attendant added, “this is actually the row we reserve for people with disabilities, so we may have to bump you if someone needs the seats. I could move you both to the emergency exit row if you prefer.” It was a strange thing; I was not disabled enough for the disabled row (what she meant, of course, was it was the row for people who need help with seating), but I was too disabled for the emergency exit row (I sometimes have to use two hands to turn a key in a door; there’s no way I’m getting that emergency exit door open). I explained that my disability prevented me from the responsibility of sitting near the emergency exit and we’d take the chance of being bumped, but it got me thinking of how “disabled” isn’t a very helpful word if you’re hoping to hint at the type of assistance you may need. I was disabled enough to not be able to turn on my own fan or reading light on the plane, but I wasn’t disabled enough (at the time) to need mobility assistance.

A similar issue arose as I registered for the NEA Leadership Summit. The NEA does a great job of making their events accessible, but they don’t communicate how much walking we can expect, so I have trouble deciding if I need accommodations. At a recent Constitutional Rights Foundation conference, I found I needed a wheelchair halfway through the day as the distance between sessions was more than I had anticipated. Wheelchairs are generally easy to rent, and they’re small enough and I’m mobile enough, that I can get by without someone making special accommodations beyond those already in place due to ADA law (ramps, elevators, etc.), but now that my shoulders are shot, the wheelchair isn’t an option unless I have someone to push me, and I won’t have that in Texas. I stared at the “Do you need accomodations for a disability?” question for so long, the application timed out and I had to start over. I checked maps of Dallas to look at the distance between the hotel and the convention area. Would I have to walk? It looked too far, but I was sure I could get a cab. What about walking IN the convention center itself? If it’s anything like the one in KC, it could take fifteen minutes to get from one end to another. Would they have scooters to rent in that instance? I decided to click no and immediately started second-guessing myself once I submitted the form. I keep thinking I can power through even though time and time again I can’t. Two days ago I was physically unable to walk due to pain in my left foot and ankle (that’s my good foot!). I hobbled a little and then couldn’t even do that. I was stopped dead in my tracks. What if that happens in Texas?

I wish there were a word that communicated that I have limited mobility and am sometimes (often?) disabled by crippling pain and fatigue. Maybe when I get a diagnosis, I’ll be able to use the name of the disease I have to communicate that, but considering how often diseases like Fibromyalgia, Lupus, MS, RA, and Celiac are dismissed by the general public (and some medical professionals), that seems unlikely. 

For now, I’ll continue to struggle to describe to others how disabled I am because I really can’t quite figure it out myself.

This entry was posted in Chronic Illness, Disability, Health, Joint Pain, Personal, Rheumatoid Arthritis and tagged , , , , . Bookmark the permalink.

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