Cap Metro–how disappointing yet unsurprising

Media Dis&Dat reports on how CapMetro, the bus agency in my city, is justifying its slashing of services to people with disabilities:

“We, I suspect, have historically let people in (to MetroAccess) who should not be eligible,” board member John Langmore said. “So it is ironic that we are having to change our eligibility process to correct our own failings in the past.”

So blatantly untrue. Cap Metro’s traditional process for approving people with disabilities for service is to to first ignore their requests for the paperwork; second, lose the paperwork; third, pretend to be getting new paperwork out; and fourth, approving the request if has made it past the paperwork delay hurdles to appear on the appropriate desk some time between 4:20 and 4:45 on a Tuesday afternoon that falls on a date that, when the digits are added, is a prime number in a month with an R.

Perhaps Mr. Langmore suspects that anyone who has managed to persevere and gain services must obviously be de facto disqualified by reason of being able to jump through hoops.

Disability denial

Drake, at Cloud Viper, talks about the trouble he has accepting that the body he has always known is a body with disability. One Sick Mother makes a really valid point (in the comments) about you not having had time to adjust after so many years of being encouraged to be in denial. Now you don’t need to be in denial anymore; you can take care of yourself and learn to live in the body you have instead of the body that nondisabled people expect you to have. But all those years of denial are going to be a while in the getting rid of.

And even then, there will be times that you think to yourself, “Oh, I’m just a whiner. I’m not really disabled.” I do the same thing myself. And then I get out of bed, like I did yesterday, putting my foot down to stand up, and I scream. And all day, people ask me what I did to cause my foot injury. And they look at me as if it isn’t the most everyday thing in the world to injure yourself by standing up. And today? Foot is pretty much back where it is supposed to be.

Now, why, when you and I and OSM are so regulary reminded by our own bodies of just how unreliable they are, do we ever have a problem accepting that we are disabled? What difference does a diagnosis make? Nothing at all has changed in the way your body works since you got diagnosed. If a new doctor disputes the diagnosis, again, nothing changes. What’s going on that we, and others around us, are resistant to the bleeding obvious?

I think there are at least a couple of factors. A very important one has to do with that damnable stick figure sitting on a half circle. Yes, that faceless, degendered symbol of disability the world over. Ever notice how s/he is always in the same condition, day after day, year after year? S/he never shows up for work with a foot working that didn’t work yesterday, or eyes not working that worked only last week. And everyone knows immediately on looking that Handy Stickperson is Special. And, also, Handicapable. Good old Handy is completely healthy, just missing a part or two, or maybe with a nice injury that can be conveniently covered up under clothing. Handy plays wheelchair rugby or runs track. Handy does not need to spend weekends in bed, shaking from pain and in pain from the shaking.

You and me, buddy? We just need to snap out of it. Get with the program. See a shrink for Munchausens. Get right with God. Take a supplement. Stop being weak. But we aren’t disabled, right? Because everyone’s seen disability. And it is painted blue and uses a ramp and doesn’t have people challenging its right to park in the disability spot. After all, those spots have the portrait of their owner, and we don’t look like that.

People are always so helpful, screaming at us that there was nothing wrong with us other than being lazy, or stupid, or whatever the adjective of the day was. See how not-disabled we are when so many fine folks have taken it on themselves to call us fakers and complainers? And we agreed, didn’t we? We accepted that we must be normal, since that seemed to be the most prevalent opinion. And then some doctor comes along and tells us that our normal isn’t. So, who you gonna believe? Some doctor, or your third grade physical ed teacher?

Not NICE

I just returned from my very lovely vacation, and am catching up on my favorite blogs. And what do I find at Junkfood Science, but a review of Social Value Judgements, a report put out by Great Britain’s National Institute for Health and Clinical Excellence for the purpose of shaping its National Health Service’s policies and budgeting. Sandy Szwarc rightly declares this document dangerous:

The entire world should care about what this disturbing document forewarns. It is the most palpable document in recent history to bring the same bioethical dilemmas, on the moral claim of personhood and quality of life versus the interests of the state, that were raised in the 1920s.

Szwarc ends with a warning that this devaluing of individual personal judgment regarding one’s quality of life is

the inevitable outgrowth of what happens, as history has taught, when health becomes public. When health is a measure of good citizenship. This is the foreseeable results when government foots the bill for healthcare: the state then assumes power to decide what happens to an individual’s body and to determine when a life is of insufficient quality or too costly to society to preserve.

I think that blaming government-run health systems is too limited a view. As we’ve seen in the US with insurance companies, the corporate board can be just as coldly utilitarian as any government bureaucracy, and will just as readily adopt bioethical reasoning in pursuit of limiting expenditures. The real caution is for us all, no matter what system is in place in our particular nations, to value human life so much that we refuse to allow the machinery of governments and corporations to treat any of us as no more than replacable cogs.

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Via Andrea’s Buzzing About:

In which I take a moment to complain

I taught today, which means I was on my feet, up and down, for three hours. I feel it now. For a change-up it is my right leg that is killing me instead of my left. I shouldn’t whine. I’ve had two really good weeks. Even though I have felt pretty much constantly like I was going to fall over at any moment, I only fell over once, and I have only had one incident of that horrible electric burning stabbing pain in the past 14 days, instead of having more like 14 in one day. So, all in all, good. But I have to repeat today’s performance again on Sunday, and then every weekend until the second week of August. On top of working during the week. I hope the legs hold out, because I would very much like to go to the beach after all this is over, and the only way I am going to get there is if I drive myself.

OK, moment of complaint is over. On to other things. Elizabeth is talking about how some asshats think she is faking it. Apparently, you aren’t allowed to be severely disabled and still get anything accomplished. Please. May I present Ivar the Boneless, Viking berserker? I particularly like how the Wikipedia article says that after his invasion of East Anglia, “An accommodation was quickly reached with the East Anglians.” Yes, I know what it really means, but I prefer to envision old Ivar putting accessible transportation in his list of demands. Then there was Timur the Lame, who would totally have kicked your ass if you so much as hinted that, just because he took over all the territiory between the Levant and India, and was on his way to taking over China, that he was lying about being lame. Yes, and after he was done kicking your ass, he’d set you on fire and then toss your skull onto the closest big pile of skulls he had at hand.

Fortunately, most people with disabilities are nice folks who don’t spend an inordinate amount of time plotting to take over the world. But the point is that people with disabilities, with diseases, with even terminal conditions aren’t dead yet and have no intention of practicing being dead before drawing the last breath makes it mandatory. Harriet McBryde Johnson is one of the best known faces of that spirit of living fully. When she died, it was, as she had planned, while she was alive, not in a state of mournful waiting, but a state of planning for the next day and the next year, in a condition of action.

What about people in pain? Should they be out pushing themselves? Of course, they should! Distraction is necessary for living with pain. Sometimes, pain is too much to keep going in the way you had before, but life doesn’t stop for pain. Usually, you have to do things simply because you have to do them. Not everyone is as full-bore determind as Elizabeth to push physical limits, but everyone stays as busy as possible for their situation. Boredom only makes everything worse. And spending part of your day in seizures doesn’t count as boredom relieving. You can check ask my daughter about that. She constantly has projects going, different ones for different levels of daily ability. That’s not unusual. That’s what people do.

Me, I’m going to finish the laundry and go to sleep. And in five weeks time, I hope I will be driving two hundred miles to salt water and setting up camp.

Who are these freaks?

It’s Blogging Against Disablism day, and I actually have a post up for it!

Elizabeth of Screw Bronze! got me thinking more about how I see myself. And how, from my perspective, I’m absolutely normal. It’s everyone else who is weird. What do you mean, you don’t pick things up with your toes? You have a hard time with clothes that have back zippers and you can’t scratch your own back without a tool? When something is just a little too far away behind you, you actually move back toward it instead of subluxing your shoulder and just reaching further? How freakish! I don’t know how you can live like that.

MD and I were talking about this earlier tonight. We both find that we are surprised to learn how much most other people are built differently than we are. Last week, I learned that one of my sisters can’t pull the skin on her shin away from the bone. See, I thought everyone could, but apparently, no, I’m the odd one. MD noticed that her husband’s hands and feet aren’t nearly as creased as hers. Again, it turns out that he’s what passes for average. So that’s “normal”? Who knew? Not us.

I suppose that if I were to wake up tomorrow with a “normal” body, it would be nice to not hit the wall of pain that immobilizes me if I can’t rest. But I think it would be hard to get used to my new limitations and I’d probably end up breaking something when my body didn’t give the way I have come to expect.

We started talking, MD and me, about how our being different and our family members and friends being different than us, is no big deal. On our own, or with certain family members or friends, we aren’t disabled. Everything we need to do, we can do. We have what we need to do what we need at the pace we need. It’s only in going out into the world that we find ourselves disabled. I’ll find myself having to carry too much weight or bend over too often, and parts of me will start going numb from pain or subluxation. There will be heavy doors I cannot open, steps and ramps I cannot climb. Though most people can’t look at me and tell that I am disabled, that door, that incline, disables me. MD is tall and robust looking. She also has a large side helping of autonomic dysautonomia to go along with her serving of EDS. So, yes, she does need to sit down. Right now. In fact, she’s going to lie down for a moment. Offer her a seat, and she’ll take it. Refuse a place for her, she’s still going down.

To us, it all so unnecessary, these doors, those stairs, that lack of seating. We go to our respective homes, and the disability falls away. We are our own normal again. And we wonder, who are these freaks who design a world that disables people?

Blogging against (dis)Ableism

It’s “disablism” to the Brits, and “ableism” in the US, but in either case, it means the attitude of treating people with disabilities as fundamentally unequal. And on May 1, the Goldfish is once again leading the annual web campaign to highlight the problem.

Congrats to the New Doctor

I am impressed with Kellie Lim, who was just graduated from medical school at UCLA. When I think of all the people who must have stood in her way, especially while she was getting her education, I am impressed with her ability to get things done. The biological sciences department at the institution where I work is notorious for declaring ahead of time that people with severe physical disabilities simply can’t do the lab work. I’ll be sure to pass Dr. Lim’s story on to them.

Have a spinal chord injury? Need an insult?

Prashant Nair, author of Spinal Injury: So Many Ways to Strike a Chord at the Science Creative Quarterly is very concerned about your sad, pathetic “mere vegetable existence.” I don’t see how to comment at SCQ, but we can at least talk about him behind his back.