WheelieTerp (Formerly Dodgingwndshlds)

“…the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped. " ~ Last Speech of Hubert H. Humphrey

We have all heard the above quote or its ilk. It is a variation on the “The true measure of a society…” adage that is so ubiquitous as to be credited to many people. Gandhi said it, Hubert Humphrey said it, my sophomore Social Studies teacher said it. It’s a nice sentiment and it is a prime example of the medical/rehabilitative paradigm of disability: Disabled people are afflicted, and need to be taken care of in order for the non-afflicted caretakers to be deemed “civilized.”

And before I go any further, I want to reiterate that this sentiment of caretaking is pandemic. It is so ingrained in the sociological consciousness of almost any society that I can think of, that to think of this in terms of blame is an exercise in futility. We are all, Disabled and non-Disabled alike, victims of this mindset. No one needs to be berated for this, least of all the progressive, compassionate thinkers who read this blog. This is an exercise in consciousness raising, not education or correction. I submit these thoughts to you as a peer, recognizing that what we always talk about when we discuss these matters is perspective and opinion. I want no one to feel shamed; I want everyone to feel the same joy of discovery that I feel when I observe these hidden truths. Being conscious of inequities gives us the power and ability to change them if we so chose. It’s a joyful thing.

So here’s my two cents about it all…

Being ill can be defined as being in a state of abnormal health. People who are ill need care, and I do believe that it is the duty of society to care for the ill. However, if illness is a state of abnormal health (and I am including injury as a state of abnormal health), then it is by definition temporary. Given enough time, plain mathematics and the laws of averages makes the illness the “normal” state of health for the chronically ill. When this happens, it is my contention that the person leaves behind the realm of illness and enters the realm of Disability.

This changes things. At this point, in a perfect world, this person would be supported in redefining their life to accommodate this dis-ability. At this time, focus would be on reaching capacity along with—or even, dare I say, instead of—the goal of reaching recovery. In a perfect world, it would be common knowledge that the ill and/or the Disabled do indeed have goals and aspirations that have nothing to do with their health, and that they have the same rights and duties as everyone does to pursue those goals not only for their own self-fulfillment, but indeed for the betterment of the society in which they live.

The problem is that the truest measure of a society is how it cares for its “weak and infirm.” There is a real interest in keeping the Disabled infirm so that the non-Disabled can prove their mettle. And anybody deemed “weak or infirm” is then subject to every individual in a society’s desire to prove his or her own worth. It’s a blitzkrieg of “help” in a toxic dose. It’s not a conscious thought, it’s not an intent, people don’t mean to, it’s just there.

As proof, I offer the example of those that were born Disabled. I think we can all agree that for these people, “normal” is whatever their “normal” is. Given the skill in adaptation that we humans have, the only barriers preventing these people from reaching their full capacity, whatever that is for each of them, are external and imposed. True, a person born with no legs may never be a runner, but how many billions of people born with legs will never be runners, either? A person’s capacity is individual and cannot be measured by comparison. We look at people who are Disabled and see only what they CANNOT do, ignoring the enormous range of things they CAN do. We not only see what they cannot do, we lament it and feel that it is virtuous to try to fix it. But to do this, we first have to make them “abnormal.” It’s an artificial construct. What is more “normal” than the way someone is born? For that matter, does “normal” have to remain static throughout someone’s lifetime? What was abnormal for me two years ago is now just another day for me. As I have said before, when I dream, sometimes I am upright, walking, but my gait is smooth and rolling as if my feet were wheels. What does that say about my default state? It says that it is in transition, yes, but that means that there is a point B as well as a point A, and who’s to say they aren’t equal in their normality?

So great! That explains THEM, but why should I let THEM get ME down? Why can’t I just let THEM have their stupid ideas of worth-measurement and just go on about my daily life just being assertive?

Well, because incumbent on their ability to demonstrate saintliness is my willingness to play the part of the weak and infirm. If I adapt to my illness, if I don’t need help…. Well! Then I am screwing with society’s ability to measure its worth and it becomes more than a slight to an individual. Now, I am truly beyond the pale: I am messing with THE WAY THINGS ARE. Now, they say, I am being unreasonable.

It’s when this happens that I am faced with the fact that the shuttle from one campus to another can no longer accommodate me because the lift is broken, and frankly, it’s gonna be a while before it gets fixed since there is not much call for it…this, after weeks of struggles with it and promises of repair. And even though I am already on the bus, the lift is stuck now, making everyone else late, so would I mind getting off the school shuttle and taking the public bus, which takes an hour longer and would make me late for work? Why am I the only one who has to get off? Because, I am not even on the right shuttle. This shuttle was going to make a detour (out of the kindness of the obviously worthy driver’s heart) and drop me off where I need to go, because the shuttle that goes where I need to go has a… you guessed it... broken lift. And yes, the lift is broken, so I have to drag myself to the door with my embarrassing and awkward, gimpy stride, going from seat back to seat back, in front of all the passengers who are already pissed off at me for “making them late” and get myself down the wet, muddy stairs on my ass to the bottom step to wait for my wheelchair that the driver can’t get off the bus for me for “liability reasons.” But hey! That’s ok! It just opens up an opportunity for a passenger to help out and prove his measure, too.

And then I get to feel like I should be afraid to post this for fear of sounding like I am bitter and unfair to the poor, well-intentioned non-Disabled folks who just wanted to help.

And then I just feel sad that it took me this long to express what I could have expressed simply by asking the question: “Why the fuck do we have stairs, anyway?? I mean, everybody can use a ramp.”