Assumptions, part two

Quick quiz

Who in this picture:
has osteoarthritis?
has acquired immuno deficiency syndrome?
has an autoimmune disorder?

I have some health problems which may be part of just one big health problem. Seems I might be following in my grandmother's footsteps. She has mixed connective tissue disease. Me and my doctor mostly treat it as it goes because nothing much or significant is gained right now by my rushing towards having "Lupus" "Scleroderma" "Rheumatoid Arthritis" or any other big disease name on my medical chart. For starters, I don't have any life insurance yet and I sure would someday like to get some for less than a bizillion dollars.

Yep, I'm tired most of the time and exhausted some days. I finally started digesting my food again and hallelujah for that but every time I eat, I have to take a pill that keeps the food in my gut long enough for me to actually derive nutrtients from it. And I have arthritis.

This means my fingers, knees, ankles, and feet hurt like hell sometimes. My feet and hands swell up, usually at night or when bad weather is coming. When I wake up, I am ungodly stiff. It usually subsides within a few hours.

While getting routine exercise is good for me, straining my joints when they hurt is not good. It makes the swelling and the pain worse and can cause damage to the joint or leave me less than normally active for days. Thus, when my ankle or knee hurts, I've learned to limit even stuff like walking and climbing stairs so I won't end up with a prolonged period of less activity, productivity, or just plain old pain. Because I'm already behind at school and oh yeah, pain and fatigue suck bunches.

The drive to Providence from my apartment was not too long. It took about an hour and a half. But that was an hour and a half of not moving my legs around much which resulted in stiffness then pain (also there was bad weather moving in but I didn't know this at the time). This put me in a not great mood because part of my enthusiasm about going to Providence was the prospect of walking around a city, checking out the little neighborhoods and different areas, finding used record stores, stuff like that. All of this involves walking of course. I expected I'd be sore at the end of the trip (heheh, no from the walking, really) but I didn't expect to start off with a big fat OW! I was disappointed but tried not to let it get me down. I resigned myself to taking it easy, eating near the hotel, and not wasting my gait on unnecessary, taxing motion that night.

After checking in, A___ and I made our way to the crowd at the elevator. A___ and I were heading for room 213, just one floor up. Most members of the crowd were attending the conference. I could tell by the name tags and the unfashionably shabby professional clothing. Comments about the one elevator ("It's still on the seventh floor?!") and the other elevator ("It must be broken") were uttered by several of the conference attendees waiting in the hall. The one elevator eventually descended slowly from floor seven. When it opened, it was like a clown car. The first few to pop out were over-eager grad students. I could tell because they were wearing special tags that said "Student Council" on them. These people scurried by just ahead of a stream of monochrome pasty men with pants riding too high above the ankle (we call it "the engineer's cut") and shirts unbuttoned to show far too much sparse grey chest hair. Aging babyboomer academics out for a night on the town.

The other elevator remained on "L" with the doors shut the whole time.

Finally we saw the back of an empty elevator which seem much too small to have held all those people ("Hey how'd they all fit on there?"). Everyone piled in, with me and A____ hanging back since we would be among the first people to get off. The doors closed. Fingers pushed buttons. Someone asked"What floor?" I said "Two please," feeling a little self conscious.

I am somewhat aware of appearances. I was only carrying one bag. It was big and sort of heavy and hard to handle with the sore ankle, but it was just the one. Further, I'm only 34 and not an older looking 34. I've got both legs, both the same length. I'm slim and straight of posture with no crutches, braces, or casts. I look fit. I look healthy (and when I don't I think people just assume it's because I am a grad student). I felt a little self conscious because I realize that someone who doesn't look overtly disabled is subject to judgment when she acts disabled. Usually people have the decency to keep that sort of thing to themselves. Times when they don't keep that sort of thing to themselves tend to be when there is a scarce resource that must be shared (or defended, or won, depending on your way of thinking) and someone, in order to access that resource, is violating or is about to violate a relevant social norm - e.g. don't cut in line, wait your turn, special people get to go first etc. (where varying levels and types of "special" can be determined by either disability or privilege).

I did not think my apparently super healthy physique, the size of the crowd, or anything else about the circumstances constituted a situation where you'd expect someone to feel they had the right or duty to speak up. But someone did.

An older man said "Second floor? You could WALK up to the second floor!" He said it in that joking but not joking condescending guy tone. I know my response came out nearly immediately and articulately but I can't recall exactly what I said. I addressed the elevator at large and said somethig like: "I know I don't look like it but I have arthritis. And my leg really hurts right now. So no. I could NOT walk up, even to the second floor."

Then we were on the second floor and the doors opened. I was so mad I wanted to wait in the lobby and when he came back down, tail him to the bar, then tell the waitresses and bartender horrible things about him (he divorced his wife during her second round of chemo, left her for a 21 year old student nurse! Excuse me, I could be wrong but I swear I just saw that man put something into that woman's drink...no that man, the older one with the short pants and the unbuttoned sweat stained oxford).

Instead, I got out and went to my room and I was mad without a visible target. It's safer for everyone that way. I got to think about what made me mad, aside from my general and easily triggered rage about how women are members of an "open category" for pretty much any fuckwit to openly comment at, to, or on. That is not negligible. It definitely was part of what pissed me off. As I said, there was nothing that "wrong" with what I did - even if you assumed I was fully fit and able - which would constitute a violation serious enough to license overt public chastizement. Then there is the whole me not being ok with being 34 and limited like this. And then there's the fact that I expect people to be at least as civilized as I am...which admittedly sometimes is not a very high level by most norms. So I don't feel like I'm asking alot there.

How many times have you seen someone pull up to a handicapped spot, park, and then walk with no apparent problem into the grocery store? What goes through your mind? You know what used to go through mine? I used to think things like "What the fuck is that person doing parking in handicapped?" or "Handicapped my ass!" But I don't think I ever said anything. I can't say for sure though because it's been a while since I've been ignorant enough to make that particular set of assumptions.

The arthritis and various other shit my body's been through over the past few years have taught me to think differently about this issue. I suspect the same is true for anyone who has had experiences showing them bodies cannot always be relied upon to act the way they look like they can act. I suspect that the kind of people who know this are either socially precocious, are close to someone who is or has been sick, injured, or otherwise physically limited, or have experienced a physically limiting problem themselves. I'm not too mad at myself for being that obnoxious 28 year old woman who would shake her head and think disparaging things when she saw a young spry looking person step out of a car with handicapped tags because I was blissfully young and relatively healthy then. My friends were young and relatively healthy then. My parents were somewhat young and relatively healthy then. My friends' parents were....you get the point. My immediate sphere did not include much close and direct contact with people who were aging or ailing unless they were patients where I worked and hell, you make major exceptions for patients.

But this is why I was so very surprised not that the comment came but that it came from an older person who should have lived enough, seen enough, and felt enough directly and immediately, to know better.