Can this be real?

And why isn't it available yet?



A power wheelchair that looks like an office chair and weighs less than 50 pounds! Wow!

Site changes

I have made changes to my blog roll. The main thing is that I replaced my list with my disability RSS feed. Stuff that wouldn't transfer as an RSS, I have kept as web links. Most of the blogs I had successfully made the change. Some didn't, either because I find myself not reading them, they update even less often than I do, or something weird just happens when I try to subscribe to them (Evil Lunch Lady, I'm looking at you!). And there's always the probability that I just screwed up and deleted something I meant to keep.

Anyway, I hope you like it, and if you are feeling left out, drop me a line.

Oh! One more thing!

I got to see the city fireworks display from my own backyard! I hollered at the neighbors that we could get a clear view, and then we sat out in the yard, listening to the squeals of the pre-schoolers in response to the brilliant display just over the tree tops. Hurray for fireworks! Hurray for neighbors to enjoy them with! Hurray for silly five year olds!

Ketosis

Well, I have reached ketosis on the induction phase of Atkins. After the first couple of days, this diet got much easier. Since I don't usually eat bread, pasta, or cookies to start with, about the only thing I've given up on a regular basis is corn tortillas. So, I just have to have my tacos in lettuce leaves instead.

Lettuce-leaf tacos (wow, that's a bad picture!)
Friday, I had roast beef with lettuce greens, lettuce, a bit of bell pepper, a jalapeno, 4 strips of bacon, more chicken, flax seeds, chicharrones with habenero sour cream, cream cheese and celery, and cream. And a small glass of red wine.

I have pretty much finished off that chicken, unless I want it to be soup, so I guess I should finish off one of the pork chops. And I intend to make some freezer ice cream, partly because it seems like a good way to mix in the fiber supplement I'm taking.

Now for speculation. Usually, I have terrible burning stabbing pains that erupt in my legs, hips, and abdomen. I haven't had one this week. Is it because of this diet? Or am I just having a lucky week?

Declaration of Interdependence

The best thing about disability is that it really brings home the truth that community and individualism are intertwined. The best community is one that supports individual achievement and difference, and the best individual is one that gives back to community.

Elizabeth is a great example of that in action. Beth has repeatedly defied society's vision of what someone in a terminal condition should be doing (i.e. looking at plants), and dared what so many of the rest of us have only dreamed. But she does it, in large part, knowing that she has supporters, people who think the world of her and her fierce determination. What she does, who she is, how could she do or be without any of us? When we cheer her, we cheer us, too. And she gives back fully. By daring to take risks, she encourages the fainter hearts among us to do what otherwise might only be a dream. Carapace (yes, I'm prejudiced here) is another person whose independence and individualism is supported by a community, and she gives back to make the community stronger. She doesn't do it the way Elizabeth does. She does it by dint of her sunny personality. Right now, she can only work a few hours a week, due to her seizures. But because her boss tolerates her seizures, her husband and I provide transportation, and the US taxpayer covers her medical expenses, the reward is that everyone who comes to the desk when she is on duty goes away feeling better about themselves. She has a compliment for everyone, insidiously spreading good will and positivity every chance she gets. Take a look at Stephen, over in the UK. He's the first to tell us all that his wellbeing is dependent upon a community that cares about him as an individual. From his loving wife, to his mother-in-law, to the infamous NHS, a community web exists that allows him to make his individual contribution to the greater good. Where would his kids be without him? Or the many friends and kinsmen who count on him as part of the joy in their world? I could go on, but I'd really rather people tell me about how they see this interdependence in their own lives. (Yes, that's a plea for comments).

Where the individual wheels, the path becomes smoother for those coming behind, who are not trailblazers, and for those who are adventurous by nature to take new, fresh risks that will continue to open the path for the community. So, by supporting individualism, the community benefits by having individuals who are more able to be part of the community.

Happy Interdependence Day, everyone.

Days 3 and 4, and this looks like it will be worth it

Wednesday, Carapace came to work with me and she made sure I ate just like I was supposed to. I had a piece of cheese, some proscuitto, and an onion for breakfast; beef, chicken, sour cream, lettuce and a bit of cheese and salsa for lunch; then a dinner of beef, zucchini, and mushrooms. For snack, I had chicharrones.

Today I didn't eat breakfast, what with needing to go to the store and to pay some bills before heading off to work. But lunch was roasted chicken, baby greens salad, a little cheese, and sour cream. I haven't eaten dinner yet tonight either, as it approaches midnight, though I just had a snack of chicharrones and sour cream with habanero salsa. I also had a Coke Plus today, which I had never had before. It is a diet Coke with vitamins and minerals. Other colas have been doing this for decades, but Coke just started this recently.

I split the Coke with Carapace, who was at work today, too, even though she thought she wouldn't be able to make it as she was anticipating a major brain meltdown. But it never happened! Sure, she was in pain and lost partial control of the right side of her body, but she never once went unconscious! Oh, let her tell it herself....

Day 2

Having started the Atkins diet Monday, I wasn't sure what today would bring. I made some eggs with fiber supplement, cream, and a tablespoon of buckwheat for breakfast, and only ate half. Lunch/dinner was 3/4 of a small zucchini, 2 green onions, procuitto, and gouda cheese with mustard. Snack was the rest of the zucchini and a small piece of beef (about 2 inches square). And right now, I'm drinking a small glass of wine. I'm not positive about the wine, but I am willing to be convinced that it has effectively no carbs (really, that's what I read online. And if it's online, it must be true. If I want it to be.)

Anyway, Tuesday was much easier than Monday. I think that not eating as much overall was a help. I don't normally eat all that much, so the portions were daunting. And I ate more cheese than anything else today, and I very much like cheese.

In two weeks time, I dream I will have a large helping of kasha (buckwheat groats), many servings of vegetables, and a handful of my favorite cereal (Not all at once! That would wreck the diet. I'll just work them in during the week). My precious, precious cereal. My favorite cereal ever, for which I looked high and low for years and found the day before starting this diet. Ah, Mesa Sunrise, why aren't you on all store shelves, with your amaranth-y, flax-y goodness?

If you see this box of cereal, buy it. Oh, it is so good, even though it is pricey.

Butter that bacon, boy

(This salad in a bacon cup is from Not Martha)

Monday, I started the Atkins diet. I'm doing it with my daughter, Carapace, who is trying it to see if it will limit her seizures. Me, maybe I will lose weight. Or not. I'm mostly doing it as moral support. It's hard being on a diet all by oneself, and a lot easier if family participates.

I am doing it without the knowledge or blessing of my doctor, who is concerned about my cholesterol levels. Am I concerned about my cholesterol levels? No. They tend to run high in my family, yet no one seems to have any troubles until their 70s. The doctor wants me to stop eating bread and butter. As he told me what he wanted me to do, I kept pointing out that I don't eat wheat products, therefore, I have very little reason to use any sort of spreads. In an entire year, I don't quite finish off one quart of cooking oil or a pound of butter. Whatever caused my cholesterol to be too high for his satisfaction, it wasn't my diet. At least, by being on Atkins, in a couple of months, I will finally have something to give up. And I look forward to that day, because Monday's meals were tasty but way more fatty than I am used to.

Breakfast: 2 eggs, cooked in butter, one cup half decaf coffee
Snack: boiled egg
Lunch: A fatty pork chop and 2 cups of lettuce, with an olive oil dressing and cheese
Dinner: Who can eat dinner after all that fat? It took me all afternoon to eat lunch.
I have drunk a lot of water today, which I don't normally do, so I guess that's a benefit that I wasn't expecting.

I did breakdown and have a handful nuts, which I understand are a bit too carby for this stage of the diet. But I wasn't driving 30 miles home without something for my brain to burn.

Tomorrow, I'll try for more cheese and some zucchini. Doesn't that sound nice? Zucchini with cheese and proscuitto.

I'm really looking forward to more vegetables in two weeks time.

My car hates me

So, yesterday, my daughter and I had big plans to go to the local ren faire and then go swimming, if our bodies were still up to that. I drove on out to her place at the end of a dirt road to fetch her. So far, so good. We got back into my car, and then I realized I need to get something out of the hatchback. So I got back out, opened the hatchback, lifted the cargo lid, and bent over to get the item. As I was bending over, the cargo lid came falling back, smacking me hard on the bridge of my nose. It was one of those blows that leave you literally unable to see anything for a moment, as all the nerves of my face reeled in shock. Somehow, though, it wasn't broken so I got back in the car, only to hear MD's horror as the blood began to bubble up through the cut I couldn't feel since my entire face had gone numb from the blow. Yes, it hurt horribly, but that didn't stop us from continuing our plans.

We went on to the faire, down another dirt road and had a pleasant time. Then we left. After a couple of minutes on the road, I heard a strange noise. Then MD piped up that she heard it too. I pulled over, and, sure enough, my brand new tire on my brand new car was completely flat. With a hole in the sidewall. Poop. Now I have to deal with getting the tire replaced through warranty, and I can't say as I want one from the same manufacturer.

Oh, and my face still hurts. The cargo lid hit me right where my glasses sit (fortunatly, I wasn't wearing them at the time) so everytime I put them on for up close work, I aggravate the injury.

Despite my car revealing its Decepticon leanings, it was still a good day. We were rescued by Sir Lancelot (MD promises to describe this) and learned from the woman whose drive I had pulled into all about an evac insurance plan that will cover emergency helicopter cost for just $50 a year. Once MD is signed up for that, I won't worry so much about her down there at the end of her dirt road.

TGIF

This has been a hard week on my pissy joints. We're shorthanded at work, so I put in some extra time during what turned out to be a very busy week. It isn't so much that I hurt. It's the feeling while walking or standing that I am about to collapse. MD was getting after me for not using my cane, but, seriously, my hands and arms are also about played out this week, too. Everything is a bit tingly all over, and achy all under.

But the weekend is here! I can take my time at my own pace! I will do laundry, and hem up another pair of pants or two, and maybe do something fun. And pay some bills and do some prep work for my summer class. Oh, and buy groceries. That's very important, what with there being nothing left in the fridge. I try to fix enough food on weekends that on weeknights, getting dinner consists of dishing out leftovers. But I didn't do that last weekend, and I have paid the price by mostly not eating when I got home.

Oh, and I have managed to teach the boss how to reduce my shoulders for me. I can't do it myself because I have too much scar tissue built up in my left shoulder; ironically, I'm not flexible enough to do it myself. Usually, it's just my right shoulder slipping out of place, but this week has been so hectic that my left has also been trying to make a break for it. If it wasn't for having a laptop and the ability to lean back with strategic placement of pillows keeping my shoulders in place, I couldn't be typing right now. Anyway, the boss reduced my right shoulder twice for me today. She's getting quite skilled at it, and is no longer squicked out when she hears the joint snap back into place.

Looking for Something to Read?

Go read Happy Fun Spaz. Encourage her to keep writing.

Thank you.

All in all a nice day, with a gimp superpower

Sunday was Father's Day here in the US. Though I wasn't all excited about eating at Applebees, the prospect of hanging out with 2/3rds of my sisters and a niece as well as making my parents happy was irresistable.

Planning on hitting the river after eating, I put on my swim gear--long black workout leggings, long-sleeved high neck stretch shirt, and river shoes with old orthotics. Then I hit the road.

On the way, I realized I had forgotten Dad's card. I stopped at the dollar store on the way to see if there was anything left worthwhile. Amazingly, there was my dad right there. Not in the store. On a card. It looked just like him, down to the mustache. Only, anyone would know it wasn't him, because the guy in picture was jet-skiing. He had a look of terror on his face similar to what my dad would have if anyone could manage to get him in the water at all. It was, therefore, perfect. Dad thinks he may have to frame it. He spent the time before the meal came imitating the facial expression of the guy on the card and generally being silly. Dad may not always have been the steadiest provider, but he may well be the most unselfconsciously goofy.

Taking leave of the parents, we headed for the river, that bain of Dad's existence. The parking lots were full, but I have a tiny car, so I was able to park fairly near the jump-in point. Yay, tiny car! We got to the river bank, tubes, towels and car keys in hand, and put the non-water stuff to the side. (You might think that's just inviting theft, but no one takes anything there. All they'd ever find would be towels and random keys.) We forced ourselves into the frigid waters. And then made a serious mistake.

We started tubing downstream without having planned to.

About half a mile down, I pointed out our predicament. Three vehicles, and not one of them would be downstream. Baby Sister suggested we walk back. I said, if we were going to do that, I had to do it now, because I can't walk far and we were already too far. I tried to get over to the bank, but my feet got stuck in the muck. With a great deal of effort, as my sisters and niece floated on ahead, I freed my feet at the cost of my shoes. Now there would definitely be no walking back. Good thing those were old orthotics. I wonder how far down those shoes were sucked?

Having learned from Dad that serious situations without any good solution require enjoying the moment, I paddled up to the sisters. Baby Sister again said we'd have to walk back to the starting point. I said that wasn't happening since I no longer have shoes, and stuck out my bare feet. A good laugh was had by all and we floated the rest of the way down to the usual getting out point, observing various waterfowl and swimming snakes (yipe!) and splash fighting with gusto. The splashing resulted in me seeing, for the first time in years, Niece with no mascara. She got the worst of it, but she loved it.

At last, we were at the get-out spot. The river taxi was there, picking up people who had rented tubes from them. That was not us. I suggested we ask for a ride anyways and discovered at that point that my gimp experience made me the only one of us four who didn't think anything of asking people to do things for me. The river taxi people didn't care at all. I excitedly informed the siblings and child, telling them to see if they could go, too, since there was plenty of room. But they cowered in fear.

With great power comes great responsibility. Which meant, I was the one who had to go for the SUV to fetch the others and their tubes. At least I got to soak Baby Sister's seat with my wet butt instead of my own car seat. And Sister J and her daughter got to go down the perilous rapids in my absence that I couldn't have managed anymore, what with the whole needing fast reflexes to not crack your skull thing that goes on there.

I did have to end up walking, though. On the hot gravel parking lot. With no shoes. My feet, which would usually simply be in pain from the experience, are now shredded and toasted, too. And my hips hurt. But I look forward to doing it again, only with better planning. And new river shoes. I have many ancient pairs of shoes and orthotics waiting their turn to appease the river goddess.

Goodbye, Harriet McBryde Johnson

As no doubt everyone knows by now, Ms. Johnson has finally died, neither young nor old. In Too Late to Die Young she explored her realization that she need not spend her life preparing for death but live as if she had as many tomorrows as anyone else. She was as sassy, as fiesty, in her writing as you'd expect from a southern belle. May she long be remembered and celebrated.

Over did it

Yes, I over did it. For that, I am paying the consequences. My legs, hips, and feet are swollen and aching. My ankles are considering never speaking to me again (go ahead, ankles. You never have anything nice to say anyway). My back is sore. My wrists feel twisted and my hands are prickly. My right shoulder is trying to make a break for it. Various nerves keep pinging to let me know of their deep and abiding unhappiness. I knew this would happen. That's why I kept putting it off. But I really needed to do it, and there is still a lot left to finish.

But at least I got half a box unpacked and put properly in the closet.

Religion, hardship, and belief

In Screw Bronze!, Elizabeth eloquently discusses the way that her old church friends have deserted her, offering weak promises of prayer instead of comradery. In the comments, Gaina inquires how Elizabeth can remain "a christian after everything you're experiencing"?

As an atheist, I wish to respond to that: Why shouldn't she?

I was once a Christian, but am not any more. I didn't drop Christianity because bad things happened to me. Bad things happen. I think monotheism creates an unnecessary problem of evil, but that's an intellectual standpoint, not an emotive one. Of all the former Christians I know, and I know plenty, not one of them stopped being a Christian because of bad things happening to them.

People who remain religious either don't feel the same degree of intellectual dissonance with their religion or find enough comfort in its myths, rituals, and world view that their dissonance is minimal in comparison. And that's pretty much all there is to it. And if believers and nonbelievers alike are willing to look past the vocabulary differences they have and get right down to meaning, generally they find they have more in common then they have as differences.

Accoutrements

I see where Amanda of Ballastexistenz has gotten silver ring splints. Good for her! I hope she enjoys them and doesn't lose them and break them, as is my forte. I do still have my thumb splints, held on by elastic because the bracelet bothers me.


My new equipment acquisition comes in the form of, yes, ugly shoes.



Oh, those aren't so ugly, you say. But you are wrong. Because these are what I will be wearing everyday no matter what else I am wearing.



They are very comfortable shoes, but having them is, for me, a concession that I had sworn to myself I would never make. Yet, here I am.

I went to the orthopedic shoe store with the best of intentions and highest hope. Maybe I'd find something that was a least all one color, even if it was a trainer. Maybe I'd even find something with some nice detail! The pedorthist brought 4 boxes of shoes. We started with Finn Comfort, an ugly but all black shoe that could pass as office casual. I walked from one end of the store to the other. He went to fetch an arch orthotic. I walked again. He retrieved a pair of MBTs, which worked great for my hip, but was nearly impossible to balance on with my left foot's severe pronation. We tried another shoe, but I was back to dragging my foot and near-collapsing every few steps. And so I knew what the final box would contain, and what I must buy.

New Balance.

Damn it.  

a bit of whinging

Poopy poopy poop poop.



OK, first, I think I have tracked down my migraine-inducer to the latest GF flour I was using. Back to corn and buckwheat! But in the meantime, I have a mouthful of cold sores and the intestinal distress that lets me know that things don't look so great on the inside either. One week and running. So to speak. Maybe by the end of this week, it will finally all be out of my system. But I have a lot of this flour leftover. Any ideas on what to do with it?

Second, it's hell time at work, which means a lot more physical movement than my joints like. Everything hurts. Except for the things which are tingly with pinched nerves. Things like, oh, my hands.

Third, I'm not very happy with people purposely getting in the way of me doing things that make my work place more accessible or with them making comments about how I do things. I don't care if it isn't the way you do things. It's the way I do it.

But fourth is funny. My housemate just woke up screaming and prancing around from a giant cockroach having run into his pajamas. I only have pain. He has a cockroach in his drawers. I think I'm ahead.

Change

I've been planning on writing on the topic of identity for some time now. With Elizabeth going through the repercussions of a serious seizure, I think maybe now would be a good time. So, Elizabeth, this is for you.

Back in the late 1980s, I could write up a storm. I could read a dense academic book, cover to cover, in one weekend, and push out 10 or more pages of coherent prose about it. I can't do that anymore. What happened? I had a major, protracted period of depression, and emerged from it different than I was. Different, but not worse. I now can't read dense prose without falling asleep, and have to reread pages, repeatedly, if I am sidetracked at all. I struggle to keep focus in writing, to have a consistent thesis or even theme. But like I said, I'm not worse for the changes. I also used to be dysthymic and anxious. Now, no, not really. I can't remember the last time I panicked or spent the day in tears. My brain has re-wired. There have been trade-offs, but I am not displeased with the new me. While it has taken me a while to accept myself as I am now, I do indeed accept me. And I never did before.

MD used to read 500 pages in a day. She was such a voracious reader that she reviewed books just to have them sent to her. She'd get a dozen a month, and still be borrowing books from everyone and every library. Then she went into what was essentially a year-long seizure. She also finds herself falling asleep while reading, which she never used to do before, so her reading speed has slowed down to maybe 300 pages a day, which is nearly half what it once was. But, she tells me, there has been a trade. She now vividly dreams what she has read, in such detail and color that she prefers her new ability to the old one.

We change all the time. The changes can be outward--stretch marks, loss of strength, loss of bits and pieces. They can be inward, with loss of mental agility or even new gifts to replace the lost old. We are shifting, never the same. The idea of self as static must give way to the idea of the fluid self, pouring over the terrain of life, adapting to whatever environment we find. Here we are fresh and clear and bubbling. Here we are constrained, dark, and deep. Here we flow underground, and there we re-emerge as a spring. The important thing is to keep flowing, and we each find our ways of doing so.

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.

Whiner

In 2002, a French woman was told by her doctor that she Ehlers Danlos syndrome and that her life over. Amazingly, rather than immediately hit him with the nearest blunt object, Clara Blanc has decided to fulfil his verdict by seeking death. She claims she isn't suicidal, but all the same, wants the right to demand that doctors administer lethal drugs whenever she wishes.

Clara, there's virtually no chance that you will ever read this, but if you do...









GET OVER YOUR DAMNED FOOL SELF!

Fuck's sake, girl, you've got crappy connective tissue. It makes life a bitch sometimes, doesn't it? But chances are that it isn't going to kill you. And you won't likely become more of a vegetable than you already have made yourself into with your self-pity festival. Yeah, you'll probably have to use a wheelchair at some point. Big whoopdedoo. There are people having bombs lobbed at them right now. Others are being attacked by sadists wielding machetes. Some people are being held in small, dark places, tortured and unknown. And every single one of them is fighting to live. You want to die? Do it yourself. Freaking wuss, can't even take responsibility for your own death, much less your life. You claim to want to be the arbitrator of your death? What makes you think you can do that when you won't be arbitrator of your life? You can't face up to the hard choices in life. You want everything easy, and when you found out that your life won't be easy, now you want to be guaranteed an easy death.

And look at the company you are keeping. Dignitas? The Hemlock Society by any other name is still a freaking death cult. They are nothing but bastards who see someone poised on the ledge, ready to leap, and begin shouting "Jump! Jump!" You need to make new friends. People who take life as they find it and live it, knowing this is their one shot. You have plenty of time to be dead, but only now to live.

What I've been up to lately

The great thing about having a blog titled "yet another never updated blog" is that no one is the least concerned when your posting drops off for days or weeks or months. Hey, I warned you in the title, didn't I? But I've had several ideas stewing for a while, just no time to develop them. But at last, the time is at hand, so to speak.

So why haven't I had any time? Well, I've been moving. It has taken me a month to do it, packing boxes and taking them to the new place in my tiny little car. One Tercel load a day makes for slow going. I did get a big truck rented and two healthy male friends to load and unload the truck for me over Easter weekend. Then there was the dreaded deposit clean-up. Thanks to family and friends for what help they could give. I know I was an absolute grouch by the end of it. But it is all for the best now. I'm closer to work, and have a housemate to split living costs and do the heavy lifting. Eventually, all the boxes will be unpacked, and I'll know where my earrings are again.

Moving was complicated, as was rather expected, by the decision of my right shoulder to go AWOL. It made driving lots of fun, too. It first fell out while driving home from work with MD. She plaintively begged, "Why are you jerking the car?" as her joints were jolted every few moments. "My shoulder is dislocated. It hurts to steer." "Oh. I'll fix it for you when we get to your place." And she did. I'm ashamed that I can't reduce my own shoulder. It's a skill that would come in handy quite often. Especially once the darn thing slips out, because while MD could get it into place for me, we both knew it wouldn't stay. A dislocation is followed for a couple of weeks with subluxations. Over and over again, I had to get people to reduce my shoulder. MD, the SIL, and My Dad (hmmm. He'd be MD also if I keep up with my routine abbreviation pattern. OK, he's My Father). Alright, then. MD, SIL, and MF are the only ones I know who have a feel for where a shoulder ought to be, and aren't afraid to put things where they ought to be. Other people...well, let's just say other people are squeamish. Since even most doctors act like reducing a joint is a major operation, I shouldn't be surprised.

And I'm glad it was just the one shoulder. Glad and surprised. I only had the usual swelling of my legs and subsequent pain, but not even my arches subluxed. Not even when I went to the zoo for my parents' 50th wedding anniversary! Wise choices in footwear make a big difference. And with that affirmation, I now plan to make a foray into the orthopedic shoe store to buy more ugly but supportive shoes, what with the older shoes being not only ugly but downright decrepit.

The joint problems in the legs have waited until this week. Both feet have been playing their "how much of a sprain can we create just standing here" game. And yesterday, my right knee tried to make a break for the back of my leg. I took this as a sign that I haven't been sleeping with enough pillows, so I bought a new one to prop me up better. I still need a new knee wedge, though. My old one is less a wedge and more a pancake. A bright pink pancake with square sides. Okay, not so much a pancake as a layer cake with icing for a six year old girl's birthday party. But with a stingy mom who only made one layer of cake. Still, sleeping propped up properly let me sleep for nearly 12 hours, off and on, and that has done wonders for my wandering kneecap.

I've completely lost track of where I was going with this. But in the days to come, I will update my book review on Short Bus, and talk about euthanasia. So, if you only read this blog when you remember to occassionally check, then check it a couple more times over the next week. I may even have a new picture of Raaaahr! Monster to share.

Shucks...

Girl, Dislocated has put me on her list. What list, you may ask? Why, this one:



So now I am forced, forced, I tell you, to update my blog again, despite its title. For the rules of this award are to pass along Kayla's blog link, and to point out 10 other excellent blogs. This is a really neat way of making sure smaller blogs get their kudos, so on to the winners' circle, in no particular order:

1. Through Myself and Back Again
   
2. Y Laurie
   
3. Bums & Bellybuttons
   
4. Screw Bronze!
   
5. The Old Foodie--Lileks shows you pictures of horrible food. The Old Foodie shows you how to prepare it.
   
6. Respectful Insolence
   
7. Girl, Dislocated (Backatcha, Girl!)
   
8. Crimes Against People with Disabilities--not a happy place, but a sadly necessary one.
9. Polite Dissent
10. In Sickness and In Health

Well, you know what I've learned from doing this? I've learned that I really need to update my blog roll. And if you think I should be reading your blog, leave me a link. Then, maybe someday, I'll move your link from my bookmarks to my blog links.

Elizabeth McClung in Japan

Anyone who isn't reading along with Elizabeth on her Dai Boken ("Big Adventure") is an ol' poopy head. Seriously, get yourself over to Screw Bronze! and read what may be the best ever disability travelogue on the web.

Shall I call it pain?

It's creeping up on 1 am, and I don't know if I will be able to sleep or not. I was having waves of (?)pain(?) flow through me. I've taken half a Darvocet in the hopes that my body will now leave me alone enough to let me sleep. I know, half a Darvocet doesn't sound like anything, but indulge me my stubborn insistance that maybe this time, I can get away with it.

I put question marks around the word "pain" because I'm not sure if pain is the right word. It's a terrible feeling--cramps, nausea, sundering.... I was actually moaning in protest, "No, no, no." But while so uncomfortable that I found myself trying to move away from myself, I'm still not sure that pain is the right word.

I'm supposed to be keeping a sleep diary for a couple of months, to see if there is any connection with the migraines, and also because I get sleep attacks. I've never been able to sleep really well, and for the first time, I am wondering if I get these paroxysms while I'm sleeping and if that isn't what wakes me up over and over again.

R!M knows just how I feel

Girl, Dislocated asks me what Raaaahr! Monster is.

R!M is a felt soft sculpture (that's "doll for grown ups") who understands just how I feel.


I fell in love the moment my eyes met R!M's. You know how, as an adult, you stifle how you feel and just tough it out through your frustrations and pains? Maybe you don't. Until I got R!M, I hadn't realized how distant I was from my feelings. R!M is small enough to travel in my purse and very light, so I'm not weighed down (I can't carry extra weight easily; it hurts my shoulders). And R!M made going to the museum much more fun. I don't think I'd have been able to ignore my swelling knees and fainting feeling half as well without R!M to distract me by posing for pictures. I can't take pix of MD because, the silly girl, camera flashes in her face trigger her seizures.

I know MD has some larger monsters, that I think she is asking $20-$30+postage for, depending on how complex they are. I will ask her if she still has some purse-sized ones, which are simpler and smaller. I think she may also have some mermaids left from her last round of soft sculpturing.

I have to say, it's great for me to have a monster who can help express fierce emotions. R!M reflects my feelings, and is also handy for a cuddle. I mean, I do have a bear, but she's long-since retired from being my emotional proxy and in much worse shape than I am, the poor dear. She's currently hanging on a wall, striking fear into the hearts of kith and kin. My sister says she looks like she's been crucified. But really, Theodora is just keeping an eye (she's only got one) on things. She's happy to leave blogging and trekking all over the place and getting shoved out of bed and stuck between cushions to R!M.

Raaaahr! Monster gets its reward

Raaahr! Monster gave me plenty of sympathy and care during my last migraine, helping me go to work and sleep and everything I needed to do despite the fact that I was nauseaus and hurt 5 days running. As a reward, Raaaahr! Monster got to do fun things with me and MD this past Tuesday, when we went to the Witte Museum in San Antonio. Sadly, we did not get to take pictures of Raaaahr! Monster at the human body exhibit, but R!M still got in plenty of mugging for the camera.

By the way, the Witte was pretty accessible, though parking still stinks. Wheelchairs are free to use, which is nice. The Pecos River exhibit is annoying for wheelchair use, since the floor is made in imitation of the caves. And they could do with some better thresholds to help get from one floor surface to another. There's a children's area that doesn't appear to me to be accessible except maybe to an adult who is watching. A kid using a wheelchair would be left out of the fun.

(If anyone wants a Monster of their very own, MD handstitches them inbetween rolling her eyes in her head and incomprehensibly mumbling. Email me and I'll let you know what her current inventory is.)

Emergency action to support Kenyan women

As I hope most people know, rape is tool of violence and oppression, not of sex. And in a situation of civil upheaval, women become the targets of those who seek to impose their will on the entire country. The increased incidence of rape in Kenya due to the ethnic strife there has led to a surge in the need for emergency contraception and rape counseling.

It is easy to feel helpless regarding violence elsewhere in the world, and to retreat into apathy. Please fight the apathy by donating to Planned Parenthood's Kenya relief effort.

Score one for the handicapped!

The image at left takes you to a comic page PSA (public service ad) from the 1950s and '60s, Score One for the Handicapped. There you will find the intrepid good boy, Buzzy, scolding bad boy Wolfie about his attitude toward their deaf acquaintance. You'll also find that said deaf acquaintance is most assuredly not Deaf. It's an interesting look at what inclusion meant 50 years ago.

Have I mentioned I hate migraines?

Sunday, I developed a migraine to go along with the shredding feeling in my joints. As a front moved in during the night, I lay awake hoping the weather would get worse, faster, instead of hanging on and on and on.

And so I got up Monday feeling as bad as I went to bed on Sunday. And then Monday was the worst, busiest, most hellish workday in quite some time. Afterward, I couldn't even drive home for three hours.

Surely Tuesday would be better, right? Well, at least work was better. And the migraine had moved into my abdomen, clenching my head only every few minutes instead of constantly. And my joints were doing better.

Wednesday, I finally saw the doctor to get something for the migraine. There is no way that medication is worth $240. If I hadn't already been sick to my stomach, seeing that pre-insurance portion of the bill would have made me nauseous all on its own. As it was, I had to pay $70 for something that didn't do a darn thing for the abdominal migraine--unless you count the ability of a med to be vomited to be something worth paying for. Work went OK, in between the puking. Oh, and Doc? I appreciate your assumption that I would stay home and rest and take care of myself, but if I was to do that every time I felt pain or nausea, I'd need to go on disability. And how would my rent get paid that way? Not very well, thank you.

My migraine finally mostly broke Thursday. Yay! Did that expensive medicine do it, or the fact that the freaking front finally finished moving in? I suspect the front.
--------------
Edited to add:

My friend Dr. Kindberg says that most migraine medication taken after a migraine has already started in earnest will take 24 hours to work. So maybe it was the Zomig working that broke the migraine. I've used it earlier on since, and have managed to ward off any lengthy pain, despite having spent the past month in the throes of moving house, which has disrupted all my routine. Still, that's damnably expensive stuff.

Doctors. Grrrr.

Elizabeth, over at Screw Bronze, was relating her frustration with her doctors, especially with how they ignore her activity level, assuming that she just lays about all day. This got me going:

Doctors will simply not believe that you are active. Maybe it's something they only do with women, but I have found it to be true ever since I was a teen. That's when I went to the doctor to ask why my hands and feet were always cold, and the fat, chain-smoking fool told me that I just needed to run a couple of laps every day. I was in high school. I took Phys Ed. I ran every day, slowly and badly, but I ran. I also regularly walked the three miles home from school. And Dr. Fool was telling me I needed to exercise.

Same crap when I asked another doctor about why I couldn't improve my stamina climbing the stairs and the hills. Never mind that I was doing it every goddamn day and had been for over a year, and it still wasn't getting any easier.

Same crap when my joints started dislocating or being constantly painful. I'm supposed to exercise? Hey, idiot, there are plenty of people less active than I am, and they never dislocate a single joint or lose the ability to turn a door knob.

Grrrrrrr.

Sore spot with me? Yes, you hit it.

Elizabeth then asked:

Your doctor experiences sound WAY more frustrating than mine - did you eventually start taking a large friend or a mallet?

So, I'm continuing my rant here.

Naw. I respond by mostly avoiding the doctors. No matter what happens, I generally feel that seeing a doctor isn't going to make things any better and will likely only result in pointless testing that reveals nothing useful. What good does it do to find out X, Y or Z if nothing will be done about it anyway? So I save myself the aggravation and just don't go.

When I have gotten things I needed, it has been because I knew exactly what I needed before I went to the doctor and demanded it. I knew I needed splints for my thumbs and fingers. I demanded I get them--though I first had to go through the hurdle of seeing the goddamn neurologist when I already freaking know that what is wrong with me is mechanical. Grrrr. When I badly dislocated a knee, and knew I needed surgery on it, the orthopedic surgeon kept putting me off, telling me to just stay off my feet for a while. Not like he ordered me up a wheelchair, either, so how does that work for over a month? I finally took myself hostage, a la Cleavon Little in Blazing Saddles. When he started to give me the usual line, I stopped him and said "You said I'd be fine by now. So I must be fine. I guess I'll start going back to practice martial arts and walking up hills. Because everything is just fine now, right?" This I said though I couldn't bend my knee and it was still swollen. Amazingly, he scheduled the surgery to remove the broken bits of meniscus for the very next week. And he was, oh so surprised to find out that I had virtually no ACL left. And he had seen me reduce my jaw when my TMJ spontaneously dislocated (he was astonished), but he still couldn't put 2 and 2 together.

Of course, a surgeon eager to cut is just as bad and often even worse.

There was the idiot doctor that convinced my 89 year old grandpa to get a new hip replacement. No, my previously healthy grandpa did not survive that. He probably had another 10 years in him if he had just used a cane instead of a getting a surgery.

And you know what happened to my grandma.

I suppose I could talk about the failed surgeries for uterine prolapse that my mom had, that ultimately resulted in a failed surgery for rectocele.

So, as far as I'm concerned, doctors aren't worth seeing unless you already know what you need and can spell it out for them. And half the time, you are worse off for having consulted them in the first place. The worst thing would be to be in your position, Elizabeth, knowing something is wrong but not what to do about it, and thus having to be subjected to fumbling pin-the-tail-on-the-donkey testing month after month as things get worse. I've been in that situation, but I knew I wasn't dying, so I could opt to stop. I'm angry on your behalf that you are being treated as lackadaisacally as I have come to expect, when they should be pulling out all the stops to find out if there is something that will stabilize your condition.

edited to provide context and to clean up typos

Dear Canada

Can we borrow some of your judges?

I ask because I read this article in the Globe and Mail, which discusses why the Ontario Court of Appeal found in favor of Kevin Keays against Honda.

A couple of years after Kevin Keays's grim struggle with chronic fatigue syndrome began to play havoc with his work attendance at an Ontario Honda Canada plant, co-workers took to mocking his constant absenteeism with cruel cartoons and resentful ridicule.

With workplace morale in a tailspin and their patience spent, Honda managers decided the situation was at the point of no return. They fired Mr. Keays, spawning a bitter court battle that resulted in a record-setting damage award for him - granted by a judge who blasted the company for an "outrageous" campaign of intimidation against Mr. Keays.

The case is to be heard on appeal by the Canadian Supreme Court. Best of luck, Canada!

Against Stigma

Over at Writhe Safely, Flawedplan says what I have been thinking about the liberal response to incidents like the NIU shooting in WaPo Good, Huffpo Bad.

Bleah

My neck has been squeaking all day. And thus my head has been hurting all day and my gut upset. I had hoped it would get better but it seems to be getting worse. God, I hate the noise of squeaky neck.

Grandma

My birthday was Valentine's Day. I spent the day with my daughter, who took me shopping. It was a great day, with my favorite companion and I both us finding jeans that fit and her not having any notable seizures, and both us our legs holding out much longer than usual. Because I spent the whole day with MD, I didn't get to spend any time with my parents until today. Mom was quite eager to give me a gift, but I didn't imagine it would be so wonderful.

First, she made sure I read the card: "Everytime I say or write [your name], I am reminded of my mother. Your grandmother loved you more than she could ever express and that is why I am giving you this gift. She would be most pleased and happy."

The gift is a necklace of crystals and silver that needs to be restrung. My grandmother wore it when her children were young, so my mom and her brothers slobbered all over it, tarnishing the silver. That makes it even better, I think.

I was named after my mom's mom, and miss her greatly though she died over 20 years ago. It was years before I stopped crying abruptly every day. Grandma was the pillar of our family.

Grandma wasn't always a pillar, of course. Her childhood and young adult years were hard and her choices not always the best. Her mother was an un-enrolled Cherokee; her father a teamster home long enough only to father another child. At twelve, Grandma was set out to work in the houses of better-off townsfolk. She became something of a groupie, leaving her hometown to be on the road with a vaudeville musician. She married her vaudevillian, but after 2 kids, he ran off, leaving her, a flapper and a stranger, in a small town. My grandfather was taken by her exotic looks and, an orphan himself, eager to step in as father to two small boys. My mom came along shortly after they were married.

Grandma kept her thoughts and feelings to herself. She didn't hug or kiss more than the expected hello and goodbye. But she was a never-ending fount of pies, cakes, home-made clothes, and wonderful summertime visits. I would spend a week with her and Grandpa, all by myself. I spent the time reading, daydreaming, and poking about. I'd help hang out the laundry on the line or ineffectually assist in her constant gardening. I'd try on every outfit in her closet--she never threw any of them out. She was order without rigor, standards without rejection. She traded plates of food with her neighbors at holidays, pumpkin pies and chocolate cakes in exchange for tamales. I am not sure that a day ever passed without dishes being returned or picked up--and no dish was ever sent or returned empty. Anyone who had any business with my grandparents came to the backdoor. Only strangers came to the front, and there weren't many of those.

Grandma had chronic health problems. Her doctors were way too eager to cut into her without really knowing what was wrong. In midlife, she lost both breasts and much of her back and chest muscle to a double radical mastectomy, but turned out not to have had cancer at all. Much of her bowel was resected, for reasons I never knew but that I suspect were due to prolapse and attempts to repair previous botched surgeries. She was prepared to die many times, but hung on, I felt and still feel, because we needed her so much. When she had been very poorly for many months, she asked when I would come see her. I made a point of going then, and she and I sat in chairs on her lawn. We talked a bit, but mostly shared time. I told her I loved her. Shortly after, her condition worsened. She refused any further surgeries and, having already said goodbye to her grandchildren, died. She was 85. Life came apart then, but I think that we've all put it back together pretty well.

There is no marker where her grave is. There is, instead, my mom. I'm nearly 50 now. Someday, it will be on me to be the marker she is. I hope I will be as good a neighbor, as nonjudgmental, as perservering, as wise, as my mom and my grandma.

To Boldly Limp Where No One Has Limped Before

Incited to embrace my geek self by Emma (so blame her), I'm going to write a bit more about Star Trek and disability. I brought it up earlier, talking about "Is There in Truth No Beauty?" (ITITNB) in reference the the blind acupuncturist story.

Emma mentions Geordi, the blind engineer in Next Gen, asking how his situation compares with that of Miranda Jones. I'm not all that hep on TNG, so be ready to flame me with the hot coals of Trek wrath for my faulty knowledge on that score. But as to Miranda Jones in ITITNB, I will dare to speak.

Jones is introduced as an anomaly, a telepathic human who went to Vulcan to learn how to shut out the voices and emotions, both hers and others', that invaded her consciousness, as well as getting a respite there by being around people who knew how to keep their thoughts to themselves. She went on to become a psychologist, a profession in which being able to read other's thoughts might be an advantage. She's on board the Enterprise to assume a post as ambassador among a species that only communicates telepathically. That species, the so-called Medusans, are said to be so ugly that looking at them induces insanity. This is pretty unbelievable, since when Kollos, the Medusan ambassador to the Federation, is shown (to the extent that it is), it appears to an energy creature that can hide in a box. Maybe there's some sort of optical trigger that gets set off in corporeal minds, that is understood by those dealing with the unfortunates who had been exposed as "ugly." That I could buy, coming as I do from a personal background of migraines and seeing MD's seizure troubles; there's nothing like a bad flicker to make life unpleasant and painful.

OK, where was I? Oh, yes. Miranda Jones. Seems she was second choice for the job, which was originally offered to Spock. And seems she is feeling that others think she must be inadequate to the task if she was second choice, so one of her fashion accoutrements is a giant chip on her shoulder. The other is a fantastic web-like lacey affair that she wears over all her other clothes. It's quite lovely. I want one. And it is what makes Miranda Jones like Geordi LaForge. With it, she can sense the physical world around her, even being able to read heart rates and body temperatures. Seriously, why isn't everyone wearing one of those things? Looks great and beats the heck out of LaForge's plastic hair accessory. The other fashion accessory introduced is the IDIC, a piece of jewelry that Spock describes as representing Infinite Diversity in Infinite Combinations. Jones thinks he's wearing it rub in her face that he's a better telepath than she is. Whatever his reasons, the idea of IDIC plays throughout this episode.

Back to our story. The sensory features of Jones's fashion statement are not revealed to the command crew until well into the episode. Before then, she gets the opportunity to jilt a lover, who decides that he can change Jones's mind if he shortcircuits the mission through murdering Kollos. Bad Decision Dinosaur would approve, for the obvious result is bwahahahahaha madness (not your garden variety mental illness, but the kind common only in Gotham City). In his agitation, loverboy Larry overcomes the entire engineering crew, navigates the ship to some unknown place outside the galaxy, and conveniently dies. The Big Three decide that their only option to finding their way home is for Spock to mindmeld with Kollos, since the Medusans have mad skillz in interstellar navigation. Jones would try to stop Spock, so Kirk decides to try his own loverboy routine on Jones in order to distract her.

With Jones and Kirk alone in the ship greenhouse, we learn that Jones went to Vulcan not just to get telepathic training, but to get away from human emotion, of which the worst, she says, is pity. Totally convinced of his own irresistable charm, Kirk yammers on about how she's going to miss being with her own kind, seeing and touching other humans. He moves in to close the deal he's making, inadvertantly exposing his thoughts to Jones. Too late, she races to stop Spock. Kollos has agreed to the plan (Spock having worn some sort of red filter that makes chatting with Medusans no problem whatsoever for Vulcans). Jones protests that she could learn all about navigation intantly and that it would be less dangerous for everyone if they let her do it instead. It's at this point that McCoy spills the beans about her blindness, telling her that piloting a starship is not among the things that her accessability device allows her to do. Spock and Kirk marvel at her overdress, Spock obviously geeking out on the tech. Seriously, if circumstances were different, Spock and Jones could completely hang together. They're both aloof, intelligent, annoyed by emotional display and willing to take chances. Spock asks why she thought it was necessary to conceal her blindness, what with it being so handy in dealing with the Medusans. Kirk, who previously had been baffled by her comment about pity being the worst of all human emotion, now buys a clue into the social model of disability, completely seeing her point that there were people who not let her succeed on her own merits if they knew she was blind.

Kollos, in its box, is brought to the bridge and placed behind a temporary divider. The meld goes smoothly, the ship gets safely home, and Spock/Kollos forget to put the red filter glasses back on. Thus the unmelding results in a dangerously agitated Spock, who gets put down with a phaser and dragged off to Sick Bay. Kirk and McCoy implore Jones to mindmeld with Spock, in hopes that she can bring him around. She reluctantly agrees but after several hours, there is no improvement. McCoy is resigned to Spock dying, but Kirk wonders if Jones is actually trying, what with her being professionally jealous of Spock. He barges into Sick Bay, where he finds that Jones has removed her webbing thing. He doesn't mention it, but picks it up, looking at her as she keeps asking who has entered. He glowers in fury, taking her relative state of undress for indifference. He then launches into her, saying that he thinks she's a cold-blooded jealous bitch who doesn't care about anyone but herself, and that if Spock died, it would be her fault for not giving a rat's ass. He storms out, leaving Jones standing like someone just hit her in the face with a particularly smelly mackerel. Kirk tells McCoy that he wasn't sure he did the right thing, seems confused and troubled by her being actually blind: "She was blind. Really blind. Really in the dark." Or is he referring to her not understanding her own feelings? But Jones shows that she can take criticism, deciding that she really wasn't trying very hard. And how does she show this? She puts on the lacey overdress, right? Nope. She leaves it where it was, and turns around to put her heart into getting Spock back to his usual self.

With Spock restored, Jones and Kollos prepare to leave the ship. Before departing, Jones thanks Kirk for the chewing out, saying that it enabled her to understand herself. After all, she had made it a point to block out her own feelings, so she really had become unaware of the scope of her motivations.

What did this episode really have to say about disability? Blindness was never presented as a hindrance to Jones in anyway. It was, in fact, a useful characteristic because it allowed her to deal with the Medusans directly. The disabilities she faced were societal (pity, and a lack of accessibility) and the usual individual ones that cut across the whole of humanity (jealousy, lack of personal insight).

Now, how does that one episode compare to the many in which Geordi figured? Well, Geordi doesn't feel a need to hide his blindness, so there's obviously been some progress. And for both, there is never a question among the humans about their right to existence as people with disabilities. I guess that's one of the lessons learned from the terrible Eugenics War of the 1990s. But I like that, for Jones, blindness is a trait that can be good, part of the entire package which makes her ideal for her job, and is otherwise no more important than the color of her hair. I don't remember Geordi ever being in a situation where being blind was an actual good, though I do remember a couple of episodes where it made him the weak link in the chain. I don't include having tech as part of the actual good. Jones being blind was good whether or not she wore the lacy thing. Geordi being blind was good only when being able to hack the banana clip was useful.

TOS took a similar approach to disability in "Plato's Stepchildren." There it turns out that Alexander's dwarfism is actually a good thing, because it has saved him from the fate of being an Insufferable Prick. He's the one that, as a viewer, you are expected to identify with: The little guy (both figuratively and physically) being pushed around by powerful interests mostly concerned with increasing their own standing. Kirk assures Alexander that, when he leaves the planet with them, that there will be plenty of other people of short stature and that being a dwarf wouldn't be any barrier to him. Even though showing rather than telling would be more effective, we are supposed to assume it is true. Probably that Eugenics War legacy, again. What I really like in "Plato's Stepchildren" is that Alexander--when given the choice--makes a conscious choice to identify as disabled in a society in which the only disability that matters is lack of telekinesis.

They were treating you the same way they treat me, just like me only you fight them. All the time, I thought it was me, my mind that couldn't move a pebble. They even told I was lucky they bothered keep me around, and I believed them. The arms and legs of everybody's whim. Look down. Don't meet their eyes. Smile. Smile. Those great people... they were gods to me. But you showed me what they really are. Now I know. Don't you see? It's not me or my size. It's them! It's them! It's them!

When offered the drug that would counteract his "biochemical deficiency" also responsible for his dwarfism:

You think that's what I want? Become one of them, become my own enemy?

Look at that. By himself, Alexander had adopted his society's disablism. But when he had the chance to bond with other non-telekinetics, he came to respect himself and understand the social model of disability. Isn't disability culture a beautiful thing?

Of course, not all is sweetness and light for folks with disabilities in the TOS generation. Despite all the progress made on other fronts, medical care for veterans injured in the line of duty remains grossly inadequate. Just ask Capt. Pike.

The Short Bus, prologue

I'm currently reading Jonathan Mooney's new book, The Short Bus. I've decided to post reviews as I read it. Meaning, not only post for each part of the book, but in the manner in which I read. This means that there may be a lot of digression. Have you any idea how many good books I never finish because I get stimulated to think of something else with every sentence? Of course, you don't, because I have never told you before now. I'm intent on not getting distracted, so putting out my thoughts as they come to me should help. And afterward, I'll assess the book as a whole. If you are also reading this book, please feel free to throw in your own comments. (Full disclosure: Mr. Mooney gave me a copy to read, for the purpose of sharing my opinion.)

So, we get to begin with my favorite part of any book, the prologue. It's my favorite because I get a sense of what to expect. I'm a great one for reading the beginning of a book and then getting restless part way through and skipping to the end. And then reading the middle if I liked the end. I don't know if this will be one of those books that I get so restless I can't read straight through. From the prologue, I think the Mooney's writing style is inviting enough that I might be able to contain myself to see how the story plays out on his terms. Or maybe it will be so inviting that I just won't be able to help myself. We'll soon see, won't we?

Probably anyone reading this blog knows what a short bus represents. That's the half-size bus that the designated "special" kids ride, rather than have them ride with the "normal" kids. There might be a reason for having a separate bus pick up some kids. Goodness knows that your average school bus is barely accessible to your average, homogenized kid. You might think that the short bus should thus be representing inclusion and acceptance. But not every kid on the short bus needs special transport. No, there's something else going on there, and right away, Mooney gets to the heart of it by climbing back on the short bus. What the short bus represents is segregation and stigma, a singling out and demoralization of those who are different. But maybe it can also represent community and identity under adverse circumstances?

As a boy, Jonathon Mooney was diagnosed as having learning disabilities, and spent most of his early education in anguish.  Mooney talks about his feelings going to the special classes, and his frustration, to the point of suicidal despair, with the insistance of the system that he "try to be normal." I can see this is going to be a book exploring how ideas of normality are used to degrade those who just won't be homogenized. He admits that the message finally became his goal, that he sought to become normal, to avoid the "freaks" lest he share their taint. He thought he had accomplished this after his graduation with honors from Brown and the publication of his first book, Learning Outside the Lines.  He had pretty much acheived supercripdom, being introduced on his book tour as having "overcome" his serious learning disability.  But while he's on his book tour, encounters with children and adults who have not "overcome" bring him around to accept the part of him that he had been running from.  The process of acceptance leads him to buy the very symbol of his difference and stigma, a short bus, to take on tour throughout the United States.  To do what?  To celebrate his release from the constraints of The Normal? To seek out others like him?  He had thought it would be Afterschool Special material, but having shaken off that notion, went ahead with his road trip.  Ooh, good prologue.  I know to expect an interesting tale of adventure, but not what that adventure will bring.


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Digressive thoughts I'm willing to share:

By the by, this whole short bus thing is somewhat later than my own childhood experience.  Back when dinosaurs walked the earth, there were no learning disabilities. You were either "normal" or you had "retardation". Everyone who went to school, went to the same school as everyone else in the neighborhood, and we all walked.  If you couldn't walk, you didn't go to school.  Of course, there was still segregation and shame attached to learning disability, whether it had a label or no.  Kids with Down syndrome were in a separate part of the building and had separate recess (I really don't remember any kids in that class not having Down syndrome, but that might be a trick of my memory) and we were given the distinct impression that they were somehow under quarantine.  Kids with less pronounced learning disabilities were mainstreamed by virtue of not having resource to the modern panoply of labels.  Though they did get to enjoy the segregation enforced within the classroom of being made to sit or stand in the places of shame, or spend a great deal of one on one time with the principal, and if any of them had masochistic tendencies, they were in luck, for there were all sorts of interesting techniques of humiliation and pain available to the educators of yore.  


Troublesome students nowadays seem to get labeled autistic and sent to the resource room. There wasn't much in the way of "resource rooms" as they are now known.  But they weren't unknown, either.  Without my parents' knowledge, I was sent to the resource room equivalent for reasons that were never revealed to me as a child but that my parents finally divulged not too long ago.  Seems my stutter and tendency to write things backwards, and some picture I drew in second grade, did not meet with approval, so for two years, I was pulled out of class to go play Uncle Wiggly and Candyland with a couple of other weirdos.  Well, that's all I remember doing there. Childhood was very confusing.  Oh, wait, I think there may have been phonics and flash cards. At any rate, they succeeded in mostly replacing my stuttering with speech hesitation and overpronunciation of consonants.  And really pissing my parents off, who put a stop to it when they finally found out. Oh, I should say, I never heard it called a resource room back then. It was the "counselor's office," and only quiet oddballs ended up there.

Blind acupuncturist

A woman in Austin is trying to get licensed as an acupuncturist. She was turned down the first time, despite passing her classes and test, for the simple reason that she is blind.

My first impression, gathered from the article I read, was that the state licensing board was acting out of prejudice:

Meng-sheng Lin is the licensure committee chairwoman, and the Dallas acupuncturist said she's inclined to repeat her vote against [Juliana] Cumbo's application.

She said she's trying to fulfill her duty to protect the public.

Lin said acupuncture can lead to bleeding that if unnoticed could pose a contamination risk.

Good grief. A blind acupuncturist might cause bleeding? Heck, my sole experience with acupuncture was with a sighted acupuncture student, who seemingly mistook me for a voodoo doll. I have complete confidence that a blind person couldn't do any worse, and might potentially do something novel, like pay attention to what they were doing. I would sooner try it again with Ms. Cumbo.

But maybe I'm just being silly. Maybe, like piloting a starship*, acupuncture is one of those things that blind people just can't do.

But, no, apparently my first impression was the right one. Google Book Search brings me Understanding Acupuncture, by Stephen Birch and Robert Felt. In Box 3.2 on page 96, they relate Birch's "good fortune" in studying with a blind acupuncturist. Perhaps the Texas licensing board should buy themselves a few copies of this book.

There's a whole tradition in Japan of acupuncture being done by blind practioners. Some fellow named Waichi Sugiyama invented the insertion tube for the needles way back in the 1600s. Did I mention he was blind? He then went on to found acupuncture schools to teach the craft to others who were blind. Both the Kiiko and Toyohari acupunture styles were developed by blind acupuncturists, though also taught to those who have the misfortune of being distracted by vision. A third of all Japanese practioners are blind.

I'm now seriously wondering about the credentials of the Texas acupuncture licensing board if they don't know this history already.

edited 2/9/08 when I finally remembered the wording I was going to use

__________________________________

*Star Trek, Original Series, "Is There in Truth No Beauty?" Dr. McCoy reveals Miranda Jones' blindness when she demands to be taught to navigate the ship. I rather like the episode overall--McCoy felt that her blindness was nobody's business up to that point. Maybe few writers in the 1960s just could imagine adaptive technology well enough to consider that perhaps blindness might not be the barrier they thought it must always be to driving anything? Aside from that, the message of the episode, that pity is inappropriate and serves to hinder the person objectified with pity, is well done. Jones has the regular assemblage of human failings, which drive her relationships and behavior, but among them is not her blindness. If she has a "handicap," it would be her telepathy--the superhuman sense she has--because it makes her extremely uncomfortable around other people. But that, too, is accepted as just part of "infinite diversity." OK, enough geeking out. Well, for the moment.

Isn't Yahoo in violation of the ADA?

According to Yahoo's service agreement, there is no recourse for people who have seizures from exposure to their blinking ads except to stop using their service:

A SMALL PERCENTAGE OF USERS MAY EXPERIENCE EPILEPTIC SEIZURES WHEN EXPOSED TO CERTAIN LIGHT PATTERNS OR BACKGROUNDS ON A COMPUTER SCREEN OR WHILE USING THE SERVICE. CERTAIN CONDITIONS MAY INDUCE PREVIOUSLY UNDETECTED EPILEPTIC SYMPTOMS EVEN IN USERS WHO HAVE NO HISTORY OF PRIOR SEIZURES OR EPILEPSY. IF YOU, OR ANYONE IN YOUR FAMILY, HAVE AN EPILEPTIC CONDITION, CONSULT YOUR PHYSICIAN PRIOR TO USING THE SERVICE. IMMEDIATELY DISCONTINUE USE OF THE SERVICE AND CONSULT YOUR PHYSICIAN IF YOU EXPERIENCE ANY OF THE FOLLOWING SYMPTOMS WHILE USING THE SERVICE: DIZZINESS, ALTERED VISION, EYE OR MUSCLE TWITCHES, LOSS OF AWARENESS, DISORIENTATION, ANY INVOLUNTARY MOVEMENT, OR CONVULSIONS.

This is ridiculous. It would be a simple matter for them to include a preference for non-blinking, non-strobing ads and backgrounds. Shame on Yahoo.

Insomnia

It's 1 AM. Every damn joint hurts. I dislocated a pinky trying to get up from my chair. Why did I think it was unnecessary to get splints for my pinkies? (Note to self: Next go-round on replacement splints, get pinkies armored.) It's a good thing there is a backspace key, because I am having quite a time of it trying to hit the right letters with enough force to make the keyboard work but not much that I dislocate the other fingers and half the time I hit the wrong letter or hit a letter and nothing happens. I really hate that--expending force to no effect other than my own discomfort. It makes me feel like I am out of phase with this dimension, going through the motions of a human body, but unable to have any proper impact on my physical surroundings. I should go take something so I can go back to sleep, but that would mean that I'd have to get up again and I'm not sure I have the will to face that again. Oh, and my muscles are spasming.

On the bright side, I'm in a good mood. I don't remember when the last time was that I slept through the night, but at least I've gotten four to six hours of sleep every night the past couple weeks. Beats the hell out of the previous two weeks, in which I was going 24 and 48 hour without sleep, and then maybe crashing for the usual four hours.

I've had a nice week all in all, even making gluten-free bread twice! And my kitchen is relatively clean despite it. I realize this is why I am aching so much. Standing to cook is exhausting, and my kitchen is not very me-friendly and can't be made to be so. So I over-extended myself this way (bwah ha ha. Sorry. EDS joke). And a friend is coming over tomorrow to help me clean house.

I'm currently reading Oliver Sack's Migraine. I'm taking an historical approach to it as an artifact of attitudes toward invisible disability. He wrote it back in the paleolithic era of 1968 and his revision was in 1992, so I have to keep in mind that he is representing the best in medical thought at the time. Otherwise, his depiction of migraine, as well as epilepsy, as partly psychogenetic would have me screaming in anger so loudly you wouldn't need me to blog to know how I feel about that attitude.

So. Will returning to my reading help me sleep? Or will it just get me riled up? Perhaps I should just fire up Joost and look for the most boring program they have available. There is one show that I know will always put me to sleep, but, alas, I don't know its name, and I am sure it isn't on Joost. It's about the Nazi fire bombing of London. While the subject is interesting, the presentation consists of a lot of flame images and sounds, with a soothing, even narration of the sort normally employed to quiet small children. If anyone knows what it is, and where I can get a DVD, I'd appreciate it. Sleep on demand will be mine at last!

Almost

I regularly read Octopus Pie, and for a brief moment, I thought that it might be going to slip in some disability awareness. But not this time, apparently.

When Hannah complains about being a cripple "doomed to society's mediocre scraps and reassuring backpats," and then Eve actually gives her a reassuring backpat, I expected the rest of the strip to follow through. But instead, Hannah storms off and Marek and Eve, respectively, excuse her anger on account of being disabled and deny her right to be angry.

Maybe in the next intallment? Not that there's any guessing. I read it in part because the storylines don't have a particular point to them, though they do have an arc.

Question from a reader

Louis Estrada posted in the replies to "Quadrapoligic" a question searching for help for an acquaintance. To improve the chance that someone who can give Luis an answer sees his question, I'm posting it here.

A young man of 20 years of age was shot several times in last year as is now a quadrapoligic and suffers daily of nerve and muscle pain on his legs. USC county hospital considers him a frequent flyer becuase of the many x's be calls 911 to pick him and deliver him to the emergency ward for sever leg pain. They say he comes in just for the pain meds because of his addiction to them. Regardless of the severity of his intake of pain drugs (hopefully he doesn't overdose), the hospital should provide some type of planned program and hospitalization for his pain; and addiction? I'm calling several doctor's and instituents on his behalf but many say they don't work with Medical.
Any free advise on doctors' who work with young ex-gangmembers now sadly disabled because of their previous lifestyles. Any information would be greatly appreciated. Tha[n]ks. Louis Estrada.

Meme pile-up

Via Kay at Gimp Parade: By the end of 2007, I will send a tangible, physical gift to each of the first five people to comment here, so long as each of those five people are willing to make the same offer in their own LJ or blog.

Be sure to email me at worldzend at gmail.com with your snailmail address so I can actually send something. I'm going to wrap for posting this week, and then send randomly. This holiday season, you can have the gift of something completely out of the blue.

Support All the Troops

Jeffrey at TopatoCo has a great T-shirt for sale. The shirts have the slogan "Support All the Troops," with the wheelchair emblem stick figure wearing a military cap. A dollar from each shirt goes to Fisher House, which provides living space for family of injured troops.

Orders are only being taken until November 17, so don't dillydally!

Wondermark

I get the feeling David Malki! knows someone who uses a wheelchair.

OMG!

Blogger is finally working again for me!

Disability in Science Fiction

From the Valve, a question about the appearance of disability in Science Fiction, leads to a generous response in the comments. Looks like a lot of books and short stories have just made it on to my "to read" list.

How to put up an Easy-Up canopy

Part One

1. Go to garage
   
2. Search for large wheeled bag that you had left conveniently by the door last fall.
   
3. Find large wheeled bag on shelf in back.
   
4. Remember that the Helpful Relatives who put it there did so during a Very Necessary reorganization of Heavy Things that you weren't ever going to do.
   
5. Try to ignore that most of those heavy things belong to said Helpful Relatives.
   
6. Drag large wheeled bag out to the yard.
   
7. Marvel at how the conveniently wheeled bag insists on twisting over to its non-wheeled side.
   
8. Open bag.
   
9. Dump everything on your feet.
   
10. Rest for an hour.
    
11. Go back to the yard.
    
12. Stand metal framework up on its legs.
    
13. Try to remember how to expand it. Oh, yeah. Pull on the sides that say "open."
    
14. Remember that this part takes two people.
    
15. Go inside until you can recruit a helper.
    
16. Contact Friendly Neighbor who owes you several favors.
    
17. Meet Friendly Neighbor in yard.
    
18. Pull from different directions.
    
19. Watch Friendly Neighbor casually slip locking devices into place without any struggle at all.
    
20. Control envy.
    
21. Say thanks.
    
22. Go inside to get ready for bed.

Part Two

1. Go to garage.
   
2. Search for huge blue canopy that you weren't able to stuff into the wheeled bag last fall.
   
3. Find it on top shelf.
   
4. Remember to think nice thoughts about Helpful Relatives.
   
5. Bring large blue canopy to yard.
   
6. Unfold the canopy.
   
7. Drag the canopy over the framework.
   
8. Align velcro strips.
   
9. Feel satisfied that this part is going well.
   
10. Close velcro anchors.
    
11. Curse as one velcro anchor rips out of the fabric.
    
12. Fetch Spray Adhesive Guaranteed to Bond Anything Permanently.
    
13. Spray the Adhesive.
    
14. Hold for a few moments as you feel your fingers bonding together.
    
15. Watch the velcro anchor fall off immediately.
    
16. Rush into the house as you realize that what is being bonded together permanently are your plastic finger splints.
    
17. Grab the Acrylic Nails Remover that you mistakenly bought a few years back.
    
18. Liberally douse hand with Acrylic Nails Remover.
    
19. Take a moment to feel gratitude toward people with acrylic nails as your fingers now separate from each other.
    
20. Grab the duck tape.
    
21. Return outdoors.
    
22. Apply duck tape liberally mostly so you won't lose the velcro anchor.
    
23. Promise yourself that you will think of a permanent solution later.
    
24. Realize you need Friendly Neighbor again to extend the legs of the gazebo.
    
25. Return indoors to recover.
    
26. Catch frightful sight of yourself in mirror. Note to self: Remove mirrors.

Another happy update

After BEAT's campaign to get AirAsia to truly live up to its motto, "Now Everyone Can Fly," the airline has announced sweeping new plans for inclusion. I especially like the frank manner in which AirAsia has admitted that it was wrong: A banner hung at the venue of the public announcement has the international symbol for disability access and a reworked slogan, "Now Everyone Can Fly, including the Disabled Guests." Congratulations, BEAT, and way to go, AirAsia.

Happy Update on Pedro Guzman

You may remember Pedro Guzman, the Californian picked up on charges of criminal trespass and deported under the assumption that he is an illegal alien. Turned out that he is, in fact, a native-born citizen, and a man with a learning difficulty which, according to his family, makes it hard for him to provide correct answers to questions. Anyway, Guzman had simply been dumped across the border, unable to speak Spanish in any fluent way and completely unfamiliar with the culture and area. His one cryptic call to his family was that he didn't know where he was. The US government to this day denies that it did anything wrong in deporting a US citizen with mental difficulties.

OK, the update? His family found him and they're bringing him home. Guzman family, congratulations on your success in finding your lost son. May all families looking for their lost loved ones be as fortunate.

Mobility Impaired

The news from Malaysia is that AirAsia is pioneering new depths of discriminatory behavior. While using the slogan "Now Everyone Can Fly," Air Asia has a policy of refusing to sell seats to anyone who may require boarding assistance. Apparently, Air Asia uses old fashioned steps on the tarmac instead of jetways. I can see that, in less developed regions, jetways may not be feasible immediately. But not being able to get on a plane without help shouldn't mean not having to fly at all or, as AirAsia suggests, paying for and bringing along your own care provider.

AirAsia comsiders anyone who can't climb stairs to be "completely immobile." That is ridiculous. I can't get up and down stairs easily (Yeah, I can do it, if no one has anywhere to go the rest of the day) and I can't even traverse a jetway under my own power in the seconds set aside for boarding. But I am not completely immobile. I can even mow my own lawn, in small sections over several days. But apparently I couldn't fly AirAsia. Most people with disabilities are not "completely immobile," but AirAsia is doing its level best to redefine "needs a bit of help" to mean "cemented in place." Way to exemplify the social model of disability!

Fortunately, Malaysia's Barrier-Free Environment and Accessible Transport Group (BEAT) is fighting the discrimination, pointing out that AirAsia's rules keep pregnant women and senior citizens, as well as people with mobility impairments, from being able to fly AirAsia. Best of luck, BEAT!

Put your oar in

I took a look at Disapedia today. It's got that whole Web 2.0 thing happening which means, well, I'll let webmaster Peter explain:

What makes Disapedia special? Why should anyone spend their time visiting or, more importantly, contributing to a site when there hundreds if not thousands of sites ostensibly dedicated to the same cause. The answer is control. The community controls its destiny on the website not just in name, but in actual physical control. For so long the battle for the disability community has been over the ability to gain control of their lives. Why should their communities and forums be any different?

So, just as the advent of the internet allowed the disabled community to cover the world and find individuals who shared the same struggles and joys of being disabled, the next shift in the internet, Web 2.0, has the potential to have just as big of an impact on the disabled community. In an era of collaborative efforts and such project as Wikipedia, MySpace, or Diggit, we have a chance to create a place that reflects our own desires. Many sites have tried to do it in the past, but because they were started by just an individual or a small group of people, they failed, or the project was abandoned and eventually became out of date. With a community though, there are thousands to make sure that Disapedia will always remain up to date and the best resource for disability on the internet, no matter what the subject.

I can't say as there's a whole lot at the site right now. But there will be if you go put in your oar.