Shougai Yakusha

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.

She has just started and only has the prologue up, but if you are curious, you also might want to read Hicchan’s Translations. And, like she says, buy Yanagi’s book even if you can’t read it.

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.

*good-looking (only applied to men)

How dare they!

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.

Japan and disabilities–links

So, to help me on my way, I am collecting informative links about disabilities and society in Japan. These will be news stories and the like. Feel free to send me a link if you find something. I will edit this post as I find new things.

A politician calls for eliminating the “weak”. He also plays a ukulele while singing about people who oppose him. I suspect his song must go on quite a bit, because he must have a long line of people who dislike him.

A disabled man is killed by shiftless lowlifes who pocketed his disability income. There should be prize to the first country that figures out how to protect dependent citizens from such vultures.

There’s a city that has made an effort to become an accessible tourist attraction. Interesting how that one politician sees people with disabilities as a burden, while a large number of pols in Takayama must see people with disabilities as an opportunity, instead.

A man who has practiced aikido and is biking around Guam. Was that common, 40 years ago, to expect babies with spina bifida to die early? That is surprising to me.

Sketchy!

The final four of my holiday sketches! I know you were hardly able to contain your excitement. Truthfully, the sketches look better in real life than in the scans, but they aren’t shabby in the scans, either. And this time, I remembered to use thumbnails instead of large pictures, so the page should load faster.

After observing the heron on the dunes, I went down to the visitors’ center. It hadn’t opened yet, so I shared the vista with a couple from Kansas. He was using a powered wheelchair to get up the multi-level ramp to the look-out. Seeing nothing strike my immediate fancy, I headed toward the center’s ramp to the beach. They had a similar idea, and got there first. The ramp goes to the beach, but not to the water. This worked out nicely for artistic purposes, as the gentleman left his chair on the paved platform and, with the help of his wife, limped out to one of the benches to better view the Gulf waters. This sketch shows the chair, with footprints leading away. A dune hides the destination.

(I’ve read that there is such a thing as a portable walkway/ramp now, and that it is used at some beaches. The US National Seashores need to invest in some. Yes, they have beach chairs free for the use, but it takes a strong person to push them and most people who use wheelchairs do not have strong people to push them. They have their spouses, their moms, their children, who are just regular strong or even on the weak side. As someone who has often had to push a person both heavier and taller than myself on tricky terrain, I plead on behalf of all the pushers, please get the walkway/ramps.)

It was getting close to 8:30 when I finished the wheelchair sketch. I chatted with the couple, and then opened my cane/seat so that I could sit watching the beach as it came alive with color and people. This beach scene shows a handful of intrepid bathers wading into the still cool waters stretching into the horizon.

Remember that heron sitting at the top of the dunes? When I went back to the beach, it (or possibly another heron. I don’t know one gray heron from another) had moved near the water.

First, it was standing in the partial shade of a picnic table canopy. The canopies are just slats, and at so early in the morning, the canopies threw stripes on the sands. I was able to get closer this time, sitting at the next table over while looking at the black-striped heron. The black on gray was fun, and I decided to leave the picture in the graytones I first rendered it.

After about ten minutes, the heron broke free of his prison garb in order to hunt along the water’s edge. Gulls and plovers fluttered out of his immediate reach, so he struck a watchful pose, waiting for some smaller critter to forget caution. I also left this one black and white.

Thanks for taking the time to look at my sketches. It was a great experience, the first of what I hope will be many day trips just for the sake of sketching.

And then it got wholly depressing

When last we met, I was venting about my terrible, horrible no-good, very bad day going to the neurologist. Why is it that, I say “I have this pain,” the medical response is “maybe there’s something wrong with your nerves!” Oh, fine, Doc, ignore everything else I am telling you. Let’s placate you with playing Tiny Taser. 

The neurologist was very nice, I must say. She did the usual poke, poke, pound, pound, before doing the electrical conduction test. What is an electrical conduction test, you ask, all doe-eyed and innocent. Why, it’s two horrible things put together: being stuck repeatedly with needles, and being zapped with electricity! Yay! Doesn’t that sound like fun? Doesn’t that sound like it would be even more fun if you werealready so tired and in so much pain that you could barely pull yourself around? One thing it does, besides give you two kinds of pain you could have done without, is contract your already worn-out muscles. Yay! There’s nothing better for exhausted muscles than forced contractions! Except the prospect of going to work right afterward and having to be on your feet and dealing with people. 

After my torture session was finished, the neuro asked me to walk around a bit, which I did as much as I could, which is to say, I collapsed a couple of times when my leg buckled. Then we looked in tandem at the MRI results. I was pleased with this turn of events, since the previous neurologist I had seen not only didn’t show me my MRI results, he hadn’t seen them himself.  The upshot of the whole thing was that she doesn’t see any substantial nerve involvement. Some narrowing in a couple of discs and some bone spurs in the spine. But not enough to cause all my problems. This is no surprise to me, because I’m pretty damn sure that most of my problems come from the way my hip and knee slide all over the place. But what do I know? I just a person who inhabits this body. 

So, let’s go on to this week. Monday. Time to see the orthopedist for the follow-up. He tells me essentially the same thing as the neuro, and I tell him that the neuro had already told me all this, and that I wasn’t surprised by it. Certainly not disappointed. 

That’s right, he says. If the nerves were involved, that would be very bad. All the things with the nerves would be huge problems that he couldn’t do anything about.

Oh, I say, brightening, then what can we do? 

“I can send you to a pain clinic for cortisone shots or you can do PT.”

Now, this is not happy news, and I made that clear. I think I looked like I was about to cry, because he suddenly looked like he realized he had made some bad suggestions. I explained that I have done PT before, and that I found it pointless and exhausting. That I am open to PT only if it is going to do something to stabilize my joints. That I want pain relief, but not pain relief alone. That I need to be able to keep my job. That I fall down. Often.

Now he looked at me as if for the first time, as if I had mentioned joint instability for the first time. Jeesh. It was asked about in the new patient form. And I told him face to face. Really, why do I even fill these things out or bother with offering information before a doctor has done playing House?

“Do you use anything now to help with the instability?” 

Duh. What’s that black thing propped up in the corner next to me? Oh, yeah. It’s called a “cane.”

“Maybe a quad cane? Or a walker? Or a wheelchair?”

All that would be fine, I told him. That I actually have used those things under particular circumstances. Except that I couldn’t use them and do my job. I explained about my job, what I do all day. 

“There’s nothing I can do, really, for intermittent instability.”

“I wouldn’t call it intermittent,” I replied.

“Well, you don’t fall down all the time.”

!

!

!

No shit, Sherlock. This hardly makes me the Rock of Gibralter. There are houses of cards that stay up longer than I do, though. That’s what I wanted to say. What I said was:

“There has to be something. I can’t keep falling down at work. And I can’t keep having this level of pain and get through a work week. Isn’t there a brace or something? Can’t it be that the joint instability and the nerve compression in my spine are making things worse together? Can’t we do one thing to help?”

At this point, he finally thought to ask about my instability in my knee. He wanted to know which direction it is unstable in. That’s easy. All of them. I showed him, saying that I’d be glad to just reduce the overall instability somehow, that maybe that would help the hip and the pain.

“How about a knee brace? Have you tried that?”

Oh, at last, we have gotten somewhere. No, I haven’t tried a knee brace. Not a real one that actually fits and doesn’t ride up or down my leg and lasts longer than a month of daily use. (Why haven’t I? Because such things are prescription, and look at the trouble I have had in just getting this far. I swear, every medical device I have ever had prescribed has been gained only by me insisting that Something Be Done Now.)

So, now I have a knee brace that does seem to offer some degree of stability. So, that’s nice. Though, so far, it hasn’t actually helped with the pain, I am hopeful that it will after I get used to it.

But I told you in the subject that this experience is depressing. And it is. Because the reality is, I need to find another job. One that pays at least as much, if not more, and also has health benefits. And that I can use a quad cane, a walker, a wheelchair, while doing.* And I need to do it soon. In this economy. And I have to tell my supervisor this, because she is also my friend, and depends on me, and I don’t want her to find out only when a reference check is made. 

*There really isn’t a good way to make my current job work out. The department is underfunded, understaffed, and overworked in an inappropriate facility with inappropriate furniture. Just ask the short people who have to get files out of the top cabinet drawers. We’d all love for our offices to be the experimental model for universal design. We’d also love to win the MegaMillion Jackpot.

Catching up

First off, go check out Charming BB’s really great Disability Blog Carnival. Go on. I’ll wait. But be sure to come back here. And be sure to leave me a link to your favorite post this month, because I host right here next month. It will mark my first time ever as a blog carnival host. I don’t have a theme I expect others to fit themselves into. I’ll see what comes up from the submissions I get. Help me out here, and send me your best stuff!

Second off. Er. Um. To continue. Er, no, to switch topics. Yes, that’s it. I went to Staple in Austin last weekend, and got a copy of Usagi Yojimbo, Book 1, “The Ronin,” signed and with a little sketch by Stan Sakai. Oh, so cool! And many other neat people also were there, such as Rod Espinosa and Chris Allen, who have both done historically oriented comics for Antarctic Press. I bought a signed copy of Allen’s Obama, the only Obama commemorative item I have spent money on. I also bought The Less Than Epic Adventures of TJ and Amal, which is a self-published book by E.K. Weaver. And I got a very nice sketch of Amal tossed in for the price! And also, I bought Phuni Comix, which is more of “Science and Religion”, which I bought last year and enjoyed. It’s probably a niche taste, but I find the silliness appealing.

And lastly, my right wrist separated Thursday night. Oh, it’s fine-ish now, but I’d like to know, why is it that I can never find my bandages and splints when I need them? What compels me to put them away? Why aren’t they laying out on my dresser along with my old teddy bear, single earrings, and crumpled receipts? I swear, I go through this every single time. Where can I put them that they won’t be in the way when I don’t need them, but also won’t be impossible to find when some part of me has decided to storm off in a hail of bitter recriminations and tears? What do you do about things like this? Where do you put your repair kit stuff that it can be fetched with whatever limb you have working at the moment?

Five-oh

The great thing about naming one’s blog in such a way as to disabuse readers of any notion of timely updating is that no one worries when I haven’t posted in over a week. This state of affairs might have gone on for another week, but my fiftieth birthday is Saturday (today), which is a big enough deal that maybe some of you would be put off if I didn’t tell you.

Not that I’m doing all that much interesting for my birthday. I’m taking a friend to the airport, meeting up with my daughter, and going to a comic book shop where I will also meet up with a friend who has never bought comic books but thinks it might be cool. And we will eat. I think I will try a Greek place my daughter goes to with her best friend.  Then we will go to Goodwill to rid ourselves of things we can no longer wear. Then we will go to Half-Price Books to rid ourselves of books we have done with and to buy new used ones. And then I will be exhausted. Gad, what am I doing? That’s a lot of standing and shopping for one day. My knees are already preparing their protest, I can tell. They are busy with poster paints, picket signs, and giant puppets. But I can assure them, my plans include plenty of sitting down time. And I have a cane that unfolds into a seat, which works well for browsing for comics and books.

Which reminds me…. I went clothes shopping last weekend, since I’ve dropped too many sizes to keep on wearing my old stuff. While I was at the mall, I spotted another woman, about my age, making her way into the parking lot with a look on her face and a gait that I recognized instantly. She was in agony, every step sending waves of pain from her feet up into her brain, and all she could think of was to keep moving, to get to her car, to sit down. She nearly stumbled into traffic but showed no sign on her face that she saw anything beyond her own pain. And she was wearing what passes for comfortable shoes, so I know this wasn’t the first time. Sister, I feel your pain. Where’s your cane? It needs to be your next purchase. 

Oh, other excitement today. I mean, Friday, not today which is Saturday. (No, I haven’t gone to sleep yet. Yes, it is 3 am. Why do you ask?)  I had my first full fledged asthma attack in quite some time. Oh, yeah, I always have asthma, and generally have some symptoms. But except during ragweed and pollen season, when I’m prepared, I haven’t had any serious problems in several years. Damn, I had forgotten just how much I hate it. Guess I’ll sleep sitting up tonight. Which is today. Er. Man, my sleep schedule is just a mess.

So, why am I going to the comic book store for my birthday? Oh, you tell me what else I should do when I am severely single and my birthday falls on a day dedicated to romance, and every freaking event in the city is geared toward couples? Dammit, I’m going to commune with my kind. It’s been over six months since I last had the time to go, so surely there’s something waiting for me. I wish Dylan Meconis’s Bite Me was out already, but I guess I’ll just have to use its coming out later as an excuse to make another foray sooner than six months. At least, it better not take 6 months to finish its journey from web comic to bound graphic novel. I wants it now!

Speaking of vampires. Sort of. Last month’s most interesting geeky fun was watching Kamen Rider Kiva, the touching story of a young man, abandoned by his vampire mother, raised by a mechanical bat and a possessed violin, who lives in a house with the best bathtub in all Japan and the worst locks. Seriously, if I’m taking a bath and people keep showing up and climbing in with me, I’m seeing the landlord about my deadbolt. But I really liked the character development of the story, and wish it had gone on longer so more could have been done. So far, the current Kamen Rider isn’t as promising. The worst photographer in 10 worlds has to fight monsters on 9 worlds in order to keep the 10 worlds from collapsing into each other. Ummm. It’s being called “Crisis on Infinite KR Worlds” by toku followers, and since versus-type stories don’t appeal to me, this one is rather leaving me cold. However, Donut, I mean, Decade, does have a “light red” uniform, so I am at least amused. Oh, and Heroes is back. The entire issue of Daphne’s CP seems to have been dropped. Why is it that a TV character only has a disability when it is convenient? I’d like TV shows to reflect the reality that disability is everyday, not just as a plot device. Thus, Kiva failed when Nago’s eyesight came back miraculously, but succeeded as Wataru, even though he got better at coping, continued to grapple with his rather substantial psychiatric issues all the way through the series. Heroes, can’t you take disability more seriously than a kids’ show?

Well, now, this post has been all over the place, hasn’t it? Happy Valentine’s Day, all you couples and triples and whatnot out there. And the rest of you, this is my birthday, so celebrate it with me. Surely there is a comic book calling your name.

Truly wonderful!

I read in Media Dis & Dat today of a new park being built in San Antonio, TX. Morgan’s Wonderland, named in honor of his daughter, will be what is probably the first-in-the-world public park with dedicated primary use for visitors with disabilities.  Philanthropist/developer Gordon Hartman has even managed to bring the city, county, and local school district in on the project, and is making sure to keep records of the process so that others will be able to duplicate his efforts. Non-disabled children and adults will also be using the facilities, but at this park, disability is not an after-thought or add-on. How neat! 

Open Letter to Obama

President-Elect Obama,

I was among the millions stirred by your victory speech the night of November 4, heartened by your call for the contributions of every American, including the “disabled and the not disabled.” I was so excited that I immediately blogged about it.

Since then, I’ve been thinking about your invitation. It wasn’t specific, which is entirely appropriate since you have no way of knowing what each individual may be able to bring to the table. What can I do, what special insight might I have? More generally, what can disabled people offer a country that often thinks of disabled folks as nothing more than an unfortunate expense? Now, since your bizarre and inappropriate selection of Rick Warren to give the prayer at your inauguration, I have a better idea of what we can bring: a sense of what inclusion actually means.

I have been disappointed in the Democratic Party for several years now. Back in 2004, at my county convention, I put forth a proposal to support the strengthening of the Americans with Disabilities Act in the wake of the Supreme Courts undermining of that important civil rights legislation. All the time, I hear “oh, no one is against the disabled.” Well, you’d have had a hard time proving it that day, as person after person, with increasing vehemenence denounced any such bill. And what justification did they give? To a person, they each stated that they were against “special rights.”

“Special rights.” What are special rights? Apparently, (here I’m judging from the comments made by fellow Democrats) the right to a fair chance at employment, the right to housing, the right to visit the homes of friends, the right to access public buildings and businesses. There is a further context, the right to the body, the right to sexuality, the right to marry. The tradition of denying people with disability reproductive rights is not just a sorry history painfully recorded as a warning to the present. Instead, it is an ever-present reality. As the Ashley X case made clear, public support for even the violation of body integrity is widespread, with sexuality being considered a burden for the disabled rather than a natural function. While law has changed to permit marriages for people with intellectual disabilities, social sentiment has little budged, and practice continues to deny people with disabilities full rights to control over personal sexuality.

What other group in the United States currently faces similar restrictions against their sexuality, their employment, their right to housing? Who else is told that access to the same rights as everyone is “special rights”? That would be everyone considered homosexual, the group you have chosen to single out as expendable in your choice of Rick Warren to offer an inaugural prayer. Rick Warren, who actively campaigned for California’s Prop. 8, and who embraces only “ex-gays.” This is a wholly unnecessary slap in the face to gays, lesbians, bisexuals and transgendered people. And it is an insult to those of us who are straight and count among our friends and family non-heterosexuals. We have seen their pain, their isolation, their hardship, and see how the inherent difficulties of being a member of a minority group are magnified by legal discrimination. Rick Warren wants to continue to make life as difficult as possible for non-straight people, justifying his discrimination with “love the sinner, hate the sin,” and calling for non-straight people to change rather than society to change. This is as preposterous a stand as demanding that people with disabilities stop being disabled before being included in society. And, yes, people do make that argument,that people with disabilities aren’t being excluded, that it is the disability at fault rather than society, and once we get “cured,” we’ll be welcome. Such an invitation to fellowship rings hollow whomever you are.

You can’t distance yourself from Warren’s small minded hatred. You didn’t need to have a prayer offered at all, and as a supporter of the separation of church and state, I’d argue that you shouldn’t be having one at an official government event. But you obviously want to make some kind of public statement, to present a particular type of image, by having a prayer said for you. And thus, your choice of Rick Warren has indeed made a statement. It is a statement that your support for civil rights for disenfranchised minorities doesn’t run any deeper than campaign rhetoric. 

Your public distancing of yourself from gay and lesbian supporters isn’t the only rejection going on right now, either. In the name of “security,” the inaugural welcome of those of us with disabilities has also been rescinded. No chairs at the parade route, insist security officials. What about walkers, canes, wheelchairs? The latest I read is that security is still “thinking” about that. Thinking about it? Thinking about clearly violating the ADA? Sadly, it won’t be the first time, since “homeland security” has been allowed to trump civil rights at every turn.

So, I am telling you now, as a person with disabilities, that what you need to do, what you need to make uppermost in your priorities as president, is embrace full civil rights for us all, not just those who already hold positions of power and privilege in our nation. You remember us, right? If you don’t, then all your beautiful words about hope and change are meaningless. Full civil rights undergirds everything we in the disability community have been campaigning for. To live in communities, in our own homes, rather than warehoused in nursing homes and institutions. To be employed based on what we can do, rather than idled based on fears of what we can’t do. To have mature sexual relationships, to have children or not depending on our own decisions, to have the right to adopt, to marry and form families. These are not “special rights” of only privileged groups. These are among the rights of all Americans. 

On Beth’s meditation: Falling

Beth uses her seizures and falling as a metaphor for the difficulties that people face, and enjoins her friends to see people’s falls (in the sense of adverse circumstances) as an opportunity to be the hero we imagined ourselves as children.

I fall quite often. It comes free with the bad hips, bad knees, bad ankles and bad feet. What I have learned is there is no point to fighting it. When I feel me going down, I bring me down instead of trying to stay upright. People often think I just suddenly decided to sit. Indeed, I did. I decided that suddenly sitting would be better than suddenly slamming into the floor. Gravity is a harsh mistress.

It’s peculiar who will stop to help and who will make it a point to not see that any help is needed. Some people are terrified to acknowledge that others are having difficulties, even small ones. To notice the needs of others would force them to have to consider helping. To refuse to help would make them Bad People. But to offer help would undermine their autonomous self-image, since in the act of rendering real assistance, the helper and the person being helped become one in their goal. And some people fear being helped for exactly that reason, that loss of the illusion of independence. I mean, it is an illusion. We are all interdependent, we truly cannot live without each other.