wheelieterp: Head shot of me: black and white. Shaved head. Black, full goatee. Big toothy smile. (Default)
Today was the first day of a class that I was going to interpret at a local institution. I say "was going to," because the classroom is on the second floor of a building with no elevator.

We all know how this should turn out. But here's the thing.. The laws? They are so riddled with loop holes and caveats that really, they are not very useful.

This is the danger of pointing to existing law and saying "See? You have recourse! I know you do, because there's a law!"

I am not a student at this institution. I am also not an employee of this institution; I am a contractor contracted by an outside, private agency. So guess what?

That's right.... Loop hole.

Seriously, I know some of you are lawyers and brilliant activists and KNOWERS OF THE LAW. What I am here to tell you is that, in my experience, the law is useless because it still funnels all the power to others. I (and those like me) don't get to decide how the law is interpreted, applied, enforced or even what the definition of "reasonable accommodation" is. The school gets to use the building, because it was purchased before a certain date, and they will bring it up to code when they do a remodel later in the year. Just like the law requires.

In the meantime, I can crawl up the stairs, asking someone to haul up my chair for me...but that is painful and humiliating and exhausting. I know... I did it today. And once the rain comes, they'll be wet and probably muddy.

Or I can quit and request that another interpreter take my place.

There goes a healthy chunk of change a month.

Yes, I could have fought. But frankly, I have a busy schedule this term, and I am still not sleeping well... Plus I have had some almost-to-the-point-of-scary-serious health problems within the past month that I am just this side of over and I am just not fucking up to fighting... And it feels like I never am up to fighting and I get so mad at myself.

According to the US Census, of men and women in the state of Oregon with physical disabilities between the ages of 21-64 years old, of all races and all ethnicities and all education levels, only 4.5% are employed. That's also a good way of avoiding law suits... But for me, I can't go on disability because I love what I do so much that my identity and happiness are wrapped up in it. I have to keep working, and in that 4.5%, I hear generations of stories of folks like me. And even though I am so sad and angry about this incident today, I just want to be allowed to work and be the friendly, jovial, happy guy that I am. I don't want to have to file complaints and protest and assert my rights and all the other crap.
wheelieterp: Head shot of me: black and white. Shaved head. Black, full goatee. Big toothy smile. (Default)
I am pretty sick right now. Some of you who are in contact with me on a daily basis know this. It's a rough time: the sort that is familiar to anyone with a chronic illness. And while I know, on some level, that this too shall pass, this knowledge makes it no less miserable nor intolerable. I am in horrendous pain, and it is all I can do to keep myself drugged so that I can loosen the pit-bull clench of my jaws long enough to get a couple of hours of fit-full sleep until the narcotics induced paranoia dreams wake me and leave me sweaty and cranky and barking at the poor Ruling Reddcub.

I describe this not for pity, but for a baseline so that you, dear reader, will know how serious I am... How inspired I am to forge the fog of self-centered, inward focus that suffering brings to tell you that what occurred today in California can only be described as horrific. There is no silver lining, and while I rejoice in relief that 18,000 lucky couples that had the ability to do so in time "get to" keep their marriage labels, this fact alone is not a victory.

I have read reports written to be soothing that the decision is more that it appears on the surface. That really, it's just a loss of the word, and not the right to relationships recognized by the state and the rights and privileges that such recognition brings. Reports that go so far as to insinuate that the folks that wielded Proposition 8 like an indiscriminate weapon of mass destruction, the religious extremists who hijacked California's constitutional process and crafted it into a missile-weapon to take out as many infidels soddomites as possible, that these Mujahideen of Morality may have actually been the ones who lost in the long run. And they have a point: the decision clearly spells out a process by which a "separate but equal but for the word" system can be set up, guaranteeing the LGBTQ communities the rights and protections and recognition under the law that we want.

Except for the word.

But see, we didn't lose the word. It's still there. We just lost the ability to use it.

The name of a thing is its core identity... Things are what we call them. And what just happened was that THEY just told US what we can NOT name our relationships. If we can't call them by the name that our society has deemed the valid term, then they don't have to see them as real. They don't have to see them at all. Sure, we can pass laws that legislate their behavior--laws that make them act right in public--but what they just told us today, my friends, is that they still don't have to like it one single bit, and before we forget ourselves, they are in power. They are in so much power that we can legislate their behaviors and make them act like decent beings in public all we want; it's not a threat to them, because they can control what our lives get called.

For this, I come out of myself in this time of illness to explain why MS may suck, but it does not suck as much as the California Supreme Court does.
wheelieterp: Head shot of me: black and white. Shaved head. Black, full goatee. Big toothy smile. (Default)
“…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.”
wheelieterp: Head shot of me: black and white. Shaved head. Black, full goatee. Big toothy smile. (Default)
I feel the need to clarify something for some people. Unfortunately, I feel the need to clarify this for people who are not on my friends list, but since this is where I rant, you all get to... er.... be clarified, even though I doubt any of you really need the clarification, such is the wisdom of my F-list!

I have Multiple Sclerosis. This is not news, I know... I talk about it here a lot. I don't, however, talk about it in person often, except to folks I know really, really well.

MS is a medical condition. It is firmly in the realm of the medical... It is a disease... It is something that is (and I use STRONG quotes here) "Wrong" with me. It is also personal, private, and just not always something I want to talk about.

I am also Disabled. I am a person with a disability. I want to point out that when I identify myself as "Disabled," I am capitalizing the "D." This is because it is an issue of identity. It is a label that defines me as a member of a community. I dare say that it is even a cultural marker, although maybe not in the strictest sense of the word. (While it's true that we Disabled folks have some social norms that are unique to our community, we don't really have a language or other markers of a true culture.)

My point here is that for me, the two are separate. Yes, my disability was caused by my medical condition, but my being Disabled is a declaration of my membership in a community.

This is important because when disability is seen in the paradigm of the medical, we get split into artificial sub-categories based on pathology and diagnoses. When it is seen as a medical issue, the direction of our community, the "Control," if you will, gets taken out of our hands and put into the hands of doctors, clinicians, social workers; people who are generally not us.

There is power in community, and there is pride. I am new to the Disabled community, yet I am not ever asked to qualify myself when I am with other Disabled folks. I am not asked what is "Wrong with me." I am welcomed and I am even learning to feel some rather strong feelings of pride around it.

But the most important part is that I am never, ever made to feel that I am NOT ABLE.

Recently, I took part in a focus group to help establish training for first responders in emergency situations such as natural disasters and the like. The very well intentioned folks for whom the focus group was set up to inform were concerned about how disabled people were handled in a recent huge drill that was done to identify areas where first responders needed training. They asked questions about how we wanted information to get to us, what "Accessibility" meant in terms of shelters, etc.... It was a wonderful, well intentioned plan to get the information from the Disabled community itself; how could they help us in an emergency situation get the life saving services we needed? It was a great experience.

And when I say things like "One thing that concerns me is that I will be safely and securely shuffled off to a shelter and taken care of," this comment is met with blank stares of confusion from non-disabled folks ( although several of the Disabled people there, who guessed where I was going had knowing smirks on their faces as if to say: "Go get 'em, Bug!").

I went on to say that I am an ASL interpreter. I have a skill that would be extremely useful in a disaster. I am concerned that I will not be allowed to participate in the relief effort because I am Disabled; that provisions will not be made to make use of our skills. We can and NEED to be able to help. THAT is what accessibility looks like.

It was later admitted to me by several good people that the thought that we, as a community, did not just need to be rescued, but that we could actually be useful was never thought of. This is what happens when Disability is seen as a medical issue and when policies regarding the accommodation of Disabled are designed by even the most well intentioned and educated able-bodied folks. Our strengths are missed.
wheelieterp: Head shot of me: black and white. Shaved head. Black, full goatee. Big toothy smile. (Default)
Yes.. My name is Bug... That's right.. you heard correctly... No, obviously, my parents did not name me that, but hey! Guess what?? if I wanted you to call me something else, I would have introduced myself that way.

Sorry if my name makes you uncomfortable.. Yes, there is a story behind it, and if you are cool enough to use my name, I may actually tell it to you.

That is all.

wheelieterp: Head shot of me: black and white. Shaved head. Black, full goatee. Big toothy smile. (Default)
One of the things about progressive agendas is that they are dynamic and, oh... I don't know... PROGRESSIVE??? History's ideas and definitions don't always fit in the moral, political, sociological, or philosophical climate of today.

Let's take feminisim for example. Now, I consider myself a feminist in that I not only support the "Radical notion that women are people too," but also in the sense that I believe there is a certain amount of a debt of deference, a restitution, owed women by society at large, and to a certain extent, individual men as well.

Feminisim has accomplished much in last few decades: women's traditional gender roles, modes of socialization, and consciousnesses have all evolved. Are we "There" yet? Certainly not, but let's take a moment to relish what has been accomplished by the labor of our ancestors.. Both women and men...as well as for both women and men. Yes, I mean feminisim has accomplished growth for men as well.

When women are empowered to redefine or challenge their gender roles, the gender roles of men, by default, also become less restrictive. Even further, the evolution of gender roles makes room for the possibility of a more than binary model of gender expression. Feminisim has made the idea of Gender Queer, or Gender Fluidity possible.

Now here's where the dynamic, progressive part comes in: As we fight for change, in whatever social movement we participate in, we have to adjust our dogma, our rhetoric, our philosphies, our whatever, to account for the changes we have won.

While many folks still subscribe to the outdated, patriarchal, sexist modes of thinking, many folks, of all genders, do not. I don't think it is possible any longer (if it, indeed, ever was), to decide that someone is part of the patriarchy just because of the genitalia they were born with, just as it is no longer appropriate to assume someone's GENDER by their outward appearance or "biological" sex.

If we get stuck in these old ideas that men are mostly "THAT WAY" or the oppressors, we are becoming the opressors ourselves, for we then naturally assume that those we preceive to be men are actually identifing that way or are following a gender role we ourselves assume they believe in.

And don't give me the whole "Male socialization" argument, either. I was "socialized" as heterosexual, or at least heteronormative, and I got over that. I can get over the male gender role I was raised in too, and you, by looking at me, have no way of knowing where I am at on THAT journey (unless I am wearing one of my skirts, then you might have a pretty good idea).

So, to you, the self proclaimed Feminist Dyke that came into my bar, took one look at me, and decided that I hated women and therefore should be confronted: take your out-dated, opressive, bigoted binary gender model and shove it up your ass. You are no better than the patriarchal, sexist bigots you fight against if you take my bearded countenance and the penis you assume I have and stick me in some old-fashioned idea of a male gender role, just so that you can have a perceived enemy against whom to excercize your pathological need to assert power you mistakenly think I am taking from you by my very audacious act of breathing. Fuck you. Grow up. Find a real enemy to fight. There are pleanty of them out there, you don't need to become one.


wheelieterp: Head shot of me: black and white. Shaved head. Black, full goatee. Big toothy smile. (Default)

February 2011



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