Some late-night ramblings on disability and perception

It is ridiculously late as I write this, so please pardon the slight rambling-nature of this post.


But I needed to work some things out.


It has been in the 90s for the past three days. Tomorrow doesn't look much better. And, being in Seattle, we have no air conditioning. So after a day being stuck inside a stuffy apartment (despite fans blasting) Tim was miserable. I took pity on him and we ran out to see Pineapple Express at the theater four blocks away. (Hooray free movie coupons!)


So, the movie was not exactly Oscar material but it was exactly what we've all come to expect from Judd Apatow/Seth Rogan. While I know I ought to expect a tad more, there are times when I find some comfort in knowing exactly what I'm about to get.


I honestly never thought I would say something so bland -- I was raised to be rather critical of films. Tim has mellowed me out a tad.


Blandness aside...


Whenever we go to this theater, I get angry. Not the theater itself but the patrons.


There are two restrooms on the bottom floor, which are clearly marked as reserved for disabled patrons. The other restrooms are up a whooole flight of stairs. Maybe 20 or so total.


I think you see where this is going


I mean, it's bad enough that people use it on their way out. (Yeah, sure, I doubt someone on the way out of the theater will just happen to be a disabled person who really needs the restroom immediately. But it is just a sore point with me.)


But I often see people ducking in before their movies. Able-bodied people. And I just want to go up to them and say something.


I want them to feel bad about using a resource that is there to help people who can't climb the friggin stairs!



Are things always what they seem?


And it's at this point that I always catch myself. Because, really, I look okay most of the time. So if I were seen using that restroom, someone might assume I was a lazy person. (I try to use the upper level. But there are days when it's all I can do to be out of the house and at the movies. Stairs are out of the question.)


So what if I'm misjudging people who have legitimate, invisible disabilities?


Yet... Disabilities tend to betray themselves, however slightly. When my fatigue acts up, my feet don't pick up as well. I tend to shuffle. Sometimes my legs visibly shake.


These are slight things, but noticeable to anyone who has been through a bodily trauma. You see slight limps, areas of the body that get nursed or otherwise used less. Thanks to a rigorous physical therapist, I even notice pronation (whether someone is rolling a foot outside to inside rather than straight heel-toe).


The signs of illness -- past or present -- tend to glimmer to anyone who knows where to look.



Still, I could simply be assuming that everyone is like me


One time, I did confront a woman about use of the restroom. As I emerged, I remarked to her that this was for people with disabilities. She was very indignant and I beat a retreat. I apologized and said I sometimes forget that, like mine, some disabilities are invisible. She haughtily agreed and basically told me to mind my own business/asked who I thought I was.


And why did I think she was fine?


Because, waiting for my turn for the lower level restroom, I heard an exchange between her and a companion. Noting the line, the companion said there were more restrooms upstairs. The woman replied, "No, I don't want to go up there."


To this day, I remain convinced that no one with a legitimate disability would say "want."


Those who can't make it upstairs -- because of exhaustion or muscular problems or something else entirely -- use words like "can't." The word "want" is bandied around by people who have options.


And yet...



A matter of words?


I still get people underestimating my limitations because I use the word "tired" instead of "exhausted."


But, when you're pretty much always worn out, you don't tend to bother with distinctions. Tired, exhausted, worn out, fatigued, enervated. Whatever.


When you're tired all the time, distinction seems pointless. Your best days are akin to most people's bad ones. So why make a fuss about the degree?


That's not to say there aren't differentiations. There's a whole spectrum of nuances to fatigue that I don't think I ever fully appreciated before getting sick. (Well, I don't appreciate them now, but I see them more clearly.)


But if you meet someone who only knows black, white and maybe a few grays... How do you describe "amber" or "sapphire" or "teal"? Would you even bother trying?



Words or abilities


So, maybe I don't make thorough enough of distinctions. That's an exercise in vocabulary. If I say "I'm tired" instead of "I'm exhausted," the meaning remains: My body has called a time-out.


But, if you are physically unable to get up the stairs, you don't say "want." You say "can't" or "I don't think I'm up to it." You say, "Not an option." You say any one of a million things, but each one will always convey your lack of control over the situation.


The fact is that, even if I was wrong about that one woman -- and I'm still not certain that's the case -- usually the cynic in me is right.


Most of the people who wander into these lower-level bathrooms are too lazy to walk up 20 stairs. Because they have no idea what it's like to have to use the "handicapped" stall.



An ode to a bathroom stall


I sometimes wonder if anyone ever stops to consider just how much I avoid these larger stalls and special restrooms. (The answer, of course, is no. At least, I truly hope that the people in my life -- or who has ever even read the title of my blog -- has better things to do with their time than wonder about my proclivity toward regular-sized bathroom stalls.)


As a kid, I used to love those things. They were huge. And had awesome bars by the toilet. I think all kids find that kind of stuff fascinating.


My mom eventually impressed upon me that I should avoid such stalls, in case I take it from someone who actually needed it. But still I always loved it when all the other stalls were full and I wound up using the big one.



Then I needed one


At age 19, I found myself having to learn how to hold objects. How to write. How to walk. I had to build up all the muscles that had atrophied into disinterest in my three months of non-movement.


And during all that, I had to use a wheelchair to get around. That meant that bathroom time was a special kind of torture.


Even with a nurse and the helper bars, you're still hard-pressed to get yourself onto a toilet. And, by the time they actually get you out of bed, into the wheelchair, down the hall, into the bathroom, lock the door... Well, you're doing it on a pretty full bladder.


I remember being so bewildered at how I had ever thought the bars were "cool."


After that, I hated them with the kind of revulsion that comes only from dependence.


Even now, I can't ever look at one without remembering the pain and weakness in my limbs, how pointless it felt, fumbling to get out of the chair when I knew I couldn't hold myself up.


I can still feel the strong assurance of the nurse's arms. She held you in a rough way that came close to hurting. But she was the vital bridge between the chair and the toilet.


So even though you wanted to scream at her (nurses are always so nice and upbeat about the worst things), even though you wanted to go back to the time when the major hassle in life was finding a stall with toilet paper, a clean bowl and no drips on the seat... Even though all that is running through your mind, you don't begrudge her anything as she bruises your armpits lifting you up with her firm hands.


Because she is the only thing, besides sheer determination, that is keeping you from peeing in your wheelchair.



Spin a mile in their wheels....


It was a short stay in the wheelchair -- probably just two or three weeks. (Due to stress and a lot of various medications, my overall memory of that time is inexact.)


But even after I had graduated to crutches, and then to unassisted strides, I never again felt like like a normal, walking person.


I was always acutely aware that I had been in a wheelchair.



Back to the beginning


And so when I see these people choosing their convenience over others' needs -- over my potential needs -- I rage inside.


But what do I do about it?


Do I confront them, and risk being wrong? Will it really do any good? Especially from someone who looks able-bodied?


I still haven't figured this out. All I know is that, as I join blog directories and end up describing why I started this blog, I become acutely aware that this all ties together somehow.



Us vs them


I started this blog because I was tired (there's that word again) of all these great frugal ideas that I couldn't use.


And, yes, in my more bitter moments there are times when I wish I had the luxury of paying down debt with even one full-time salary, let alone two. (Eventually, I go back to a fairer state of mind. I realize that frugality and debt reduction are never easy -- regardless of circumstance. And that there are a number of people whose circumstances are tougher than mine, who'd view my life as riddled with luxuries.)


I started this blog because I realized that if I couldn't do a lot of this stuff, how did other disabled people -- who are likely to have low incomes and high bills, who are therefore likely to be in debt -- how did these people cope?


But did it stop at disabilities? Does everyone else have it peachy-keen?


What about the people who had a job or two and kids? How much of this stuff can they do?


And this is when I realize that my fatigue is not unique. It is simply exacerbated. It is a worse form of a bad symptom most of us have.


We all have limitations and all have to learn to prioritize and do what we can -- and then learn not to beat ourselves up about the rest.


But that's still no excuse for using a disabled restroom.