Sometimes I have something to say, and here is where I say it. Lots of talk about disability, Ehlers Danlos syndrome, general geekiness, family and friends, and whatever shiny captures my attention at the moment.
I have migrated the contents of this blog to a new one hosted by WordPress. I am tired of being constantly locked out of Blogger at home, unable to either comment on friends' blogs or post to my own. Please visit me at iformaybe and reset your links, if by some chance you actually link to me.
This past summer, I moved back into Austin to be near work. I was just so tired of losing two hours a day to driving and of all the associated expense.
I have lately been reminded, quite harshly, of why I was willing to commute an hour into and out of town for work rather than live near work. Austin is a sink for pollution and pollen. I have severe allergies. We are not a good combination.
At any rate, this past summer has been mild and moist, a perfect growing environment for nearly any plant. And what plant is most annoying come August? Ragweed. And it is everywhere, and worse than usual, and I feel hellish. I've been on steroids since Friday and can't say that I feel particularly better. I can't get the crap out of my lungs, and the medicines I'm on, while keeping me out of the hospital, add their own layer of lethargy, stupidity, and clumsiness to that so helpfully already provided by asthma. I do OK as long as I am semi-reclining in bed. But bills get paid by me getting out of bed and hauling my ass to work, so into work I must go even though I get exhausted just surfing the net.
And work? The air conditioner is broken. Lovely. Nothing to filter the air or remove a few ounces of water from it. Yesterday, I ended up begging to go home for a bit, just so I could rest enough to close up the office later. Since it was either that or me slowly crawling on hands and knees unable to summon the strength to get up, the boss agreed. Fact, people: Oxygen is vital to good health.
Enough whining. I have to get myself ready to go in again. Maybe the AC will be working.
A while back, I was reading an English language blog on life in Japan. The post was about a government report that seven of ten Japanese people with disabilities have experienced discrimination. The first comment, from someone with disability: "And the other three were in a vegetative state and couldn't answer." All comments after that agreed that the first comment was correct, that discrimination is extremely wide-spread and the report was likely understating the problem.
So, it was with great interest that I read that Kotaro Yanagi, a member of the ikemen* acting troupe, D-BOYS, had published an autobiography of his life since sustaining a severe brain injury. Great interest, and despair, because my ability to read Japanese is pretty much limited to distinguishing the men's and women's toilets. But now one of his bilingual fans is taking it on herself to translate for all the people who have bought the book but can't read it. Seeing as I was hopelessly pondering how expensive it would be to find someone to do that very thing, I couldn't be more delighted.
At any rate, I am very eager to read how Kotaro has managed to continue as a performer. And also, I am delighted that he's still considered an ikemen actor. I wonder if the same thing would hold for a young American actor who faced similar difficulties.
I have been incredibly busy lately, and so quite late in checking blogs, email, festering sores that need attention.... OK, I did manage to work in the attention to festering sores. But I have had a deficit of web time. Yesterday, I was finally able to work through my RSS feed. Huzzah! And good thing I looked instead of just marking all as read, as I was tempted to do after three weeks of neglecting it. For there in Pharyngula, was a post about some perversely diabolical doctors essentially recommending taking poison to prevent the calamity of lesbian daughters. He is shocked and horrified, calling it "a convenient anti-uppitiness pill for women" and supplied a link to Alice Degner's criticism of the experiments at Bioethics Forum. A commenter also gives a link to Degner's commentary on the matter at Psychology Today.
While both of Degner's articles are worth reading in full, I call your attention to this sentence from her Psychology Today piece: A democratic medical establishment does not alter people's bodies to fit regressive social norms; it advocates for patients by demanding the social body get its act together.
This, this, this. This is why the attacks on people with severe disability, the failure to respect basic bodily integrity and human rights, are not an attack on just people with disabilities. It's convenient and self-assuring to assume that what happened to Ashley X, the maiming of her body for her parents' convenience, is something that only happens to a special class of people for whom it somehow a "good." But it shouldn't be so hard for people to understand that there are a whole lot of groups of people who aren't convenient. As David said "Ashley is me. I am Ashley. And you are Ashley, too." (Sorry, I lost the link to David's blog post and now only have this CNN article.) And now a medical "cure" to fix the main problem of being inconvenient!
This is much in keeping with the historic "destroy the Indian in order to save him" tactic of late nineteenth century US humanitarians (and, I understand, the practice of forced deculturization also has been done by Australians against native peoples there). "Of course," they say with a patronizing tone, "nobody actually hates the _________ (disabled, blacks, Indians, women, gays, etc.). This is for their own good. Because we care!" And, yes, I suppose it is a better approach than Phillip Sheridan's "nits make lice" genocidal one. But, my dears, it is the same damnable attitude. If the "other" is acceptable only when made convenient, the "other" isn't acceptable at all. And what of those who can not be made convenient under any circumstance? Then there is Sheridan's approach, which the patronizing will let happen while they wring their hands over how sad it all is.
It was bound to happen. The past few weeks, I had been thinking how well I feel, how I was able to get all sorts of things accomplished and that my pain levels were completely manageable with hardly any narcotics at all. Oh, sure, there were other things. Asthma attack. Gluten contamination. Some minor narcolepsy-type events. But nothing all that serious. Thus, I planned a busy Easter weekend doing housework and getting paperwork taken care of.
Which means, of course, that first thing this morning, my right foot went out of place and all I can do is wait for it to reduce itself. As long as I stay completely off it, I'm fine. But as soon as I get up, I'm hurting. I can't do housework, can't cook, can't rummage through my files looking for the papers I need, because all that requires that I stand and walk and use my hands. And I can't stand and have free hands since I need them to hold onto the canes to keep the weight off my foot. Not even my fancy-schmancy shoes help.
Here's hoping tomorrow is better, because there is so much I need to do. I want to at least put my new plants in pots.
My friend Frida was verbally abused by people paid out of tax money, in front of her children, because she uses a mobility device.
There are people who insist that "nobody hates the disabled." Those are generally the words that one hears prior to explaining how discrimination against people with disabilities isn't actually discrimination. Don't tell me this isn't hate. Don't tell me it isn't frightening and intimidating, that it isn't meant to be frightening and intimidating. Don't tell me they hadn't intended to degrade her. I am sick of excuses.
Yes, boys and girls, the unthinkable has happened, and we had actual snow that caused the people in suits to send us home early from work. Just a smattering of snow, you say? Aha! Spoken like someone who lives where there are enough sand trucks to get to all the bridges before the carnage mounts.
Frankly, I would have preferred to have been told not to come in at all, since driving in a mix of hail, sleet, and snow is not my idea of a fun time for all.
OK, friends, I need a gadget. Surely there is something out there that will alert me that I have forgotten to turn off the burner on the stove. Something besides the smoke alarm that I can never reach and end up knocking to the ground where it lies dormant until I get someone else to put it back up. Something that will come on before the smoke alarm. That would be good. I've already managed to cook the spout right off one tea kettle. Stop me before I manage new feats of inadvertent stove-top metallurgy.
One of the last things I did in 2009 was go, yet again, on a quest for decent orthopedic shoes. This time, I even remembered to bring my prescription! Yay! When you know from the outset that your fugly shoes and insoles are going to cost you in the neighborhood of $200, it is nice to know at least they won't be taxed.
The ones I bought back in August were already breaking down from the stress of my gait and stance and being worn constantly everyday. And shoes that are breaking down don't do much to prevent pain or keep me from falling over. And if the shoes aren't preventing pain and keeping me upright, then tell me again why I am wearing orthopedic shoes with my dresses? Yes, time for new visually unappealing footwear.
I went to a different orthopedic shop this time, that carries slightly different stock in both shoes and in-soles. So, this time, I ended up with a pair of Drew Boas and a whole new in-sole build. The Boas are still not what one would call appropriate for dresses, but I actually like their look. They are black with silver highlights and glow-in-the-dark white piping. (Just like the one on this page about them.) And they don't have to be tied, which is an unexpected good feature. Instead, there's a knob on the back that twists to tighten the lacing. Since my fingers are on the wanky side, my laces were always coming undone and posing a tripping hazard. I still have to tighten these throughout the day, but the laces can only get a bit loose, not flop around. And I just have to tug on the knob to loosen the laces up enough to take the shoes off, so removing them isn't the chore it often is if I have ties that I've managed to somehow get to stay put.
OK, that's the shoe part. The really exciting part is the insole. They had me try Cluffy Wedges to prevent my big toes from hyperextending and help with the pronation. And they work! I was really hesitant to say anything to y'all at first for fear that the good effects were temporary and that my sloppy feet would just find a new way to fail. And maybe they still will. Who knows? My feet have mysterious Fail powers. But these past two weeks, it's been amazing. Dear hearts, I actually have been able to take the stairs because my knees and hips have fallen into alignment. I had--get this!--muscle pain in my thighs and back instead of joint pain from the waist down! To me, this is sort of the toe version of Silver Ring Splints. Yes, I still have to have significant arch support and a lift for my left leg, and I still have to wear orthopedic--er, "comfort"--shoes, but it is a big deal to be able to actually stand in the checkout line at the grocery store for as long as it takes instead of having to abandon the cart and try shopping again some other time.
And I'm also happy with Total Relief Footwear, for not only figuring out a good system for me but also being understanding in finding me something that I don't find depressing to wear. They were worth the extra driving distance.