Retired Waif

Headless cemetary statue, no icon. Last year I swore I’d know how to do this by the time it came up again… don’t you guys think the above would make an awesome disability blog carnival icon?

Last year’s carnival wasn’t quite about birth, just yet, and appropriately this year’s tackles the subject of death from one of the most death-shy people you’ll ever meet. As I mentioned recently to a friend, I’m that life-at-all-costs jackass who harumphs when someone decides they’re too goddamned tired for their fifth round of chemo, who has made sure everyone around me knows yes, I would too want to live like that, and who has no patience for the idea of bowing out gracefully so as to avoid being a burden. I’m all about being a burden, as my husband and children will attest.

Nonetheless, I have a death fascination of sorts. For a long time, I thought quite a bit about becoming a funeral director (although I don’t think I have anough of a grasp on the realities of that particular job) and half of studying religion is studying how to die.

The other half, at least presumably, has something to do with spirituality, which is another theme for this Carnival.

Death

Spirituality.

End-of-Life “issues.”

Most of the the disability bloggers I’ve read have, with varying degrees of eloquence, had to tackle those issues, and on the whole have managed to do so with grace, honesty, wit and sometimes anger. In their own words, then

It isn’t nice and sweet, this carnival. To begin, we’re going to take a look at the case of Esmin Green, who, as Day in Wshington reminds us, had a name other than “mentally ill woman.” Harlan Ellison once said that no-one should go into the ground with too few words spoken, and Stephen Kuusisto of Planet of the Blind has a few to say about Ms. Green’s death. I thank him.

I don’t think there are enough words for the death of Harriet McBride Johnson. Certainly, the ones that occurred to me seemed trite and inadequate–”hero,” “inspiration,” “courage”–all true, but a bit too telethon-ese for that particular warrior. Thus, I’m going to let Kay Olson at the Gimp Parade speak for me, in her wonderful tribute to Harriet’s life and work.

In Secondhand Smoke, the issue of disabled lives continues to be debated in a hot discussion about Delaware’s proposed resolution protecting cognitively disabled people from euthanasia–and an argument about the term “brain death” (and how it is often confused and conflated with static encephelopathy and PVS) follows in the comments section.

End-of-life issues come to the fore as cherylberyl blogs her ambivalence in a post on disaboom called Would I Want to Live? I really like her style of writing, its very young and fresh without being cloying, and she puts a lot of things that I’ve thought myself in a calm and simple order.

In her raw and honest letter, Ruth at Mom’s Musings looks at how some of the same questions can be asked at the beginning of life, and how those in authority might not be ready to hear the answers. This one is a must-read; I’ve been hoping to see more parents of children with disabilities participate in these carnivals. Ruth is a wonderful discovery.

Another post relating to children: from Adventures in Daily Living, an imaginary phone call that tells the whole story, Meanwhile, Kristina Chew at Autism Vox asks the hard, but essential, questions about “independence” that will shape her son’s future. On the subject of childhood, Disability Nation takes a look at the new “disability dolls.” For the record, I like them very much. I don’t have an ideological explanation for that, I just… like them. It’s a doll thing, I suppose.

Two post by Bint at My Private Casbah are of interest to the topic. In Don’t Call me Differently Abled, she discussed how the saccharine euphemizing (my term, not hers) in the Differently-Abled label actually depersonalizes disabled people by refusing to acknowledge their reality. Also, in a post on Meals on Wheels cutbacks, she gives a harsh dose of reality about the life-or-death need seniors have for these programs.

Emma at Writings of a Wheelchair Princess has written specifically for this carnival, and has done a marvelous job. Her post on the Three D’s is extremely powerful, and includes a wonderful quote that she (rightly) feels is relevant to this entire carnival.

At Touched By an Alien, Laura affirms life, with a post on the best time of her life. Something about this short entry brought home to me exactly how evanescent any “best time” really is–another reason I decided to host this carnival, I suppose.

Paula at E is for Epilepsy also agrees that one cannot learn to die who has not learned to live (yes, that’s totally backwards, remember this is me putting together a late blog carnival while trying to read about redaction criticism) and for Paula, education is the key to a life well lived.

Frida Writes has a post on how issues of sexism affect women’s health and survival, both in the diagnostic process and in their actual survival rates. Women, she points out, are more often told to “think positive” and at the same time often have their symptoms dismissed as being all in their heads. I’ve experienced this myself; many of the female disability bloggers I’ve met (particularly we sickies) have a long history of being patted on the head and being treated for depression, only to later, when the indisputable facts of illness are laid out bare, be told that our positive attitudes will make all the difference.

Elizabeth McClung at Screw Bronze has decided to tell her positive attitude where to go in Angry, one of several important–and immortal–posts she’s made this month. I have to include more than one Elizabeth link here, because the carnival also needs her Letter #1 on Dying, which includes, in the comments page, a startlingly insensitive but genuinely-felt rant on giving up from yours truly–Elizabeth may be a boxer, but I’m the world champion in unsolicited advice for my weight and size.

None of us, whatever decision we make, are taking the easy way out; if there is one, I’ve yet to find it. One of my favorite blogs, I Trust When Dark My Road, contains a recent post “Longing for the Fleshpots of Egypt” about despair as disability, and just how elusive that “easy way” really is.

I include Pentimento’s post on Margaret Sanger, the culture of death, and individualistic spirituality, because the ideas she expresses touch on many of the things I see in the other posts included here. While not disabled herself, the author of this blogs has confronted loss with both gracefulness and grace. I don’t expect everyone to agree with her summation of the New Age movement or her appraisal of Sanger, but whatever one’s political, social or religious beliefs might be, the issue of eugenics in modern culture is one from which people with disabilities cannot hide.

I’m closing this carnival with a post on the funeral rites for Emperor Norton. Although the piece touches on Norton’s disability, asking why other mentally ill San Franciscans were locked away while an attempt to have the Emperor involuntarily committed nearly had the city in mutiny–it isn’t the full disability-studies treatment that Norton deserves. Maybe one of us will write that one.

Thanks to all of you for letting me host again. This isn’t quite the carnival I wanted it to be–I wanted something of my own here, and I wanted a chance to really delve around the blogosphere finding hidden gems–but school intervened, and I hope I haven’t disappointed too terribly.

School intervenes, in the form of a major exam tomorrow, and it seems the Disability Blog Carnival will be a day or two late. It will be up by this weekend.

I got some amazing submissions, by the way. Thank you!

It is not my week.

I finally went in for the appointment to get the tattoo for which I’d been waiting and saving for almost a year. I had spoken with the artist (really good artist at really top tattoo place, this is not something I had done in the parking lot of the White Plains mall) about the design–a snail, with a few different kinds of ferns, on the right calf. I made a few points in the initial consultation.

1) I wanted it to look as detailed and naturalistically rendered as possible. We discussed, and looked at, some botanical engravings to get an idea of the style.

2) I did not want a thickly-black-outlined cartoonish thing, but something more realistic, if possible.

3) I was very specific about the colors I wanted. Natural. No weird colors for effect. Green, lots of different shades of green, brown snail. Again, realistic.

3) I gave her the go-ahead to make the composition of the drawing whatever she thought would look nice, and said I didn’t want to micromanage that part of the process.

Well.

I have just spent $400 on a tattoo that I’m not at all happy with.

It’s the color, really. I mean, pretty much everything I specified above was completely ignored, and I can’t navigate social situations well enough to stop a process like that once it gets going. The drawing is quite nice, although the snail is more than a bit cartoon-y and the ferns look pretty generic. There are some dark, broad, leaves in there for no real reason at all.

But the colors. O. M. F. G. There is no green in this thing. No green. A sort of bluish-blackish-green, in parts. Some parts of the leaves are kind of… orange? The whole thing is shaded through with tons of black, which I had made the point of saying I really did not want. The snail? There’s… pink? in it? It really does not stand out at all against the background, although I can see the pink was an attempt at getting it to do so.

I have spent 48 hours telling myself it’s all right. It isn’t. It really isn’t.

So, for the readers, some really serious questions.

Can I have this retouched in some way? Can they go over some of these bizarre colors with some green? White? Something?

If so, when? How soon?

Most important, if I’m having this color-corrected in as much as such a thing is possible, what do I want to be doing differently during the healing process? The entire new-tattoo-care regimen is designed to avoid fading. If I want to fade this as much as possible, so that I can eventually get the colors fixed, what do I want to be doing? Sun? Soaking it?

Thoughts?

Any and all advice welcome. Pics to be added to this post soon, for those who like to look at train wrecks.

So I haven’t been around lately, because I’ve been, seriously and for real, actually out of the house for once in a while. No lie. This hermit thing is for the birds once summer hits, and I’m doing my best to actually get the kids in the open air as much as possible.

This is all made much, much easier by the fact that I have my new chair, which is utterly slick, and can now do things other than clutch my husband’s arm all day or somnambulate wincingly from parking-area to place-to-sit. It’s a good thing. Mostly. Sometimes it’s not, for reasons which are beyond my understanding but seem to revolve around the fact that I’m so terribly little and so terribly attractive. Or something. I don’t actually know many other people who have gotten quite as much of this sort of attention, although if I’m wrong please vent away in the comments section because holy hell, people can make some jackasses of themselves, can they not?

Case in point: Lately (as in, since I’ve had this chair and have no longer been a bitter, reclusive, jagged little housebound pill) I’ve been heading up to Local Rather Ritzy Little Suburb to do my work at Starbuck’s, take the kids to the park, wander around drinking espressos with my husband, and all the other things that I just plain haven’t done for a while. Seems a decent choice of place. The sidewalks are smooth, there are curb cuts, the stores are mostly accessible, there’s a decent amount to do, and there are a few hills to work the arms on as I’m slowly edging my way towards Angelina Jolie shoulders.

Which is the problem. Not the shoulders, the hills. I have gotten more unsolicited touching and potentially-dangerous-or-damaging “helping” then I thought possible, and while it happens all the time and my consent is apparently irrelevant to these people’s need to have some sort of do-gooder moment at my expense (someone actually ripped a cup out of my hand that I was placing in a trash can and tossed it in with a loud, satisfied “There!” and then waited to be thanked, my response was along the lines of “What just fucking happened?”), nowhere is this completely solipsistic behavior more in evidence than when the sidewalk begins to slope even ever so slightly towards the idea of becoming a hill.

Despite the invention, some time ago I believe, of a circular frame or disk arranged to revolve on an axis on vehicles or machinery (popularly known as the “wheel,”) people remain, apparently, very very daunted by hills. On my behalf. The situation is so dire, in fact, that it renders null and void any requirement for consent on my part to being touched, grabbed, or screamed at. Yeah, I’m being cute and sarcastically formal in the way I write this, and maybe it’s witty as hell or maybe it’s falling flat, but trust me this is the tone I take when I don’t even know what to do anymore. I’m at a loss. The things that have happened this week, all of which involve hills, have me this close to going back into the house permanently or starting to pack heat.

Nobody warned me. I knew people were asses, I knew that they’d talk to my husband instead of me if we were together*, I knew I’d hear jackassry such as “Oh, are we on an outing?” when I was at the pharmacy (response: “Actually, I’m trying to get my Adderall prescription and some lambskin condoms, latex sensitivity, thanks for asking, do they even make those anymore?”), but nobody told me that the hills would be the breaking point that finally proved to me that the rest of the world has gone utterly and completely batshit insane.

Here’s a brief summation of a few of the incidents I mean:

The farmer’s market: Not the first time this sort of thing happened, but the first time that the situation went beyond one in which I could continue to chirp “No thank you! No thank you!” and started letting the obscenities fly. You see, the Farmer’s Market I frequent and the ATM a block-and-a-half away are separated by… (cue the spooky music)… a HILL. OK, a pretty steep hill. It’s actually a hill that I practiced on a few times to make sure I was up to the hills on campus, before I took the chair out alone for the first time. It goes… up. On a grade. In one direction. As a hill does.

Halfway up I hear panting behind me. A fortyish woman who, let’s be frank, probably spends a good deal of her time praying to be in the sort of shape I’m in is laboriously clambering up behind me and, thinking she might need to pass, I pull aside and stop. Mildly annoying to stop on a steep grade, but no more so than having to hurry up on her behalf would be. When she catches up, I expect her to pass so that I can continue, but instead she stops and, proud as anything, beams “I came up here to help you!”

“Oh, thank you so much, that isn’t necessary,” I tell her.

“Oh, no, it’s fine, she says, and proceeds to dart out her hand and make a snatching sort of grab for the back of my chair. And right here is where I lose all sympathy for these people. It’s the grab. It’s not just that they’re touching without permission. Not just. It’s the fact that the grab is fast and the grab is furtive, because they know. They know they’re doing unwelcome shit. They just think they can get away with it.

I could really hold back a loud, startled “What are you doing?” and things devolved from there. She wouldn’t leave, just stood there, arms folded, yelling about how she was helping and I should be grateful and so on and so forth. Egh. Enough.

After she’d finally, finally gone away, I turned back up the hill again, sharing a shaking-our-heads-in-disbelief glance with my ten-year-old. Not two more feet up the hill it happened. Crack. The seat-back (which is extremely low) gets slammed into the small of my back, hard. Someone, a man this time, has apparently decided that he’s going to take over this going-up-the-hill thing for me and, not seeing any way to push the chair (because there isn’t one) has decided to grab the backrest and shove.

No.

I was, at this point, beyond furious. Guy, as well, was livid at being challenged by the ought-to-be passive victim of his help. To quote Forster, “the man was young, the woman deeply stirred, in both a vein of coarseness was latent.” Anyone reading this blog knows there’s more than a vein of coarseness in this waif, and it ain’t all too latent–and my rescuer had quite the temper himself. Yelling. Screaming.

People. If you’re not certified to repair this chair, don’t put your hands on it unless you’re prepared to buy me a new one. Really. It’s bloody expensive and insurance covered none of it (but they’d cover a powerchair, which costs thousands more, how asinine is that?). Also, I sliced my own hand open (there’s apparently a reason this chair is named the Razorblade) and don’t really want to be liable for someone else’s misguided injury. Speaking of injury, I did call the police, and it is assault to grab someone’s chair, and the officer I spoke with said that it might even be possible to make a case for leaving-the-scene if you break something on the chair and then run off, refusing to give me your info. I wonder if I can charge it as a bias crime when they respond to the assault charge with “but she’s disabled!”

You can’t really predict what kind of quixotic, litigious lunatic is sitting in that chair you’re trying to grab, so why not try asking first? The ass you save may be your own.

On a much, much happier note, I’m hosting the disability blog carnival again! And, since last year’s carnival was almost a birth, I’m choosing to focus on the other side of the coin this year. Death! Death planning, spirituality, end-of-life issues, “right-to-die” legislation, and a look at some of the notably saddening losses the disability community has sustained in the past year. I have it on good authority that the next carnival is something like “fun in the sun,” so let’s all get good and goth with this one first, just to show we are many-layered and complex souls.

*the talking-to-my-husband-instead-of-me thing is amusing, but no more so than the people who will stand, purse their lips, tap their foot and glare at him for not “helping” me with everything from going over an itty bitty curb to opening my purse or somesuch. It’s really quite rude, and if they don’t stop we’re seriously considering putting on a whole show in which he berates me for not doing these things correctly (”It’s a little bitty curb cut! Jesus Christ, Hala!”) and I pretend to cry. Since obviously, the people want a show.

So, it’s been a pretty crap Memorial Day Weekend thus far. Friday, I had people over, and since I had the temerity to actually think that the word “remission” means anything, I actually cleaned my house up a bit and cooked a meal, and wham, back into bed the next day with walking trouble, pain, and of course the remnant of The Headache that’s been following me around. Will it ever go away (she asks plaintively)? Tried going to Botanical Garden in the Crap Rental Chair, couldn’t really manage it, had a woman actually grab the handles and try to move me out of the way of her enormous stroller. Think about the for a second, because I’m sure said woman would have screamed bloody murder if someone had tried to grab her stroller like that, you know?

But really, none of this is on my nerves quite as much as this story: It seems that a kindergarten teacher led her class to vote a five-year-old with Asperger’s “off the island,” so to speak. Encouraging the kids to call him “disgusting” and “annoying” (you know, I’m sure this was in the guise of “sharing their feelings”), “his Morningside Elementary teacher said they were going to take a vote… By a 14 to 2 margin, the class voted him out of the class.”

The cherry on top, of course, for anyone who follows disability news whatsoever, is the article’s “comments section.” If anyone ever tells you disablism doesn’t exist, please direct them to the comments section of any article on disability. Here are some gems:

This is a great way to let the democratic process intervein in problem solving and conclude in a determination by your peers. This should be a good time for parents to use this as a learning experience for their child. What can he do differently? Does he want to be a member of the class?
This is cutting edge behavior management.

People want to fire this woman? I’m willing to bet money that some of these yah-hoos who post would do the same, if not worse if they had to deal with a disruptive child in class. People are SO QUICK to judge.

To “teachcbs”: As a teacher myself, I DO NOT believe in mainstreaming. What a way to water down education and force the teachers to multitask their abilities all for the sake of a politically correct concept.

How about the education of the other kids in this class. Does that matter to ANYONE? This kid is in the PROCESS of being diagnosed with and ALLEGED problem. That means he isn’t sick yet. Too many GD excuses nowadays. The parents should be brought up on charges of impersonating good parents. Maybe this wasn’t the best method but this is getting out of hand with discipline or lack thereof in the schools. Raise the level of discipline and watch the scores go up.

Why didn’t the Principal separate this child by putting him in a special class. Autism is distruptive and it was the children who said they thought he was disgusting, etc… I believe the adminstrative end has failed the teacher and she was probably forced to deal with a child with special needs and this was a way to do it. I expect what happened to this child was probably not any worse than what he was dishing out to the others.

The teacher did the job the school officals would not do, maybe the wrong way to some , but at least the problem is identified and now both Alex and his classmates have a chance to excell in their own way and not just put it off for another day.

I support the teacher. The brat should be made to understand how his classmates feel about his behavior.

So. Yet again, I’m in make-up post-semester hell. But it will be fine, it will all be fine, I have Provigil and I’m in much less pain and thank God for my husband who is the world’s most attached, mellow babywearing dad and seems more than chill with taking The Beako out for long walks while I get all this last-semester stuff finished. I am not well, but you know. Well for me.

Also, trumpet fanfare please, The Chair should be arriving any day now!

Anyway, feeling better. Well enough, at least, to shill for my friends. So, in the interests of passing my little cup of joy around the room, two things have been making me utterly thrilled lately:

Organic chocolate from Snake and Butterfly.

Oh my goodness. Since I’ve gotten utterly ridiculous about what I eat, chocolate’s been kind of off the table for me. Celeste’s chocolate is completely different–sort of like what I imagine chocolate would taste like if you followed a winding trail through the rainforest to the secret stone temple of the ancient, dream-like chocolate-gods.

OK, if that image is a bit much for you, I will mention that she uses live raw cacao beans, mills the chocolate in small batches to an extremely delicate texture, and sweetens it with things like maple sugar and agave nectar and most importantly it tastes clean and it does not make me sick.

She makes coffee bars and truffles all sorts of good things. I’m pestering her to make me a Mexican chocolate bar with cinnamon and cumin in it. Go. Buy from her. She doesn’t have a site set up yet, but will add you to her mailing list if you send an email to snakeandbutterfly@gmail.com. Do so.

The second thing I’m in love with?

T-shirts, thermals, anything and everything made by Love Nico.

(designer Corinne painting the Love Nico tees)

First of all, they’re called Love Nico, so obviously I am sold right there. However, Corinne has been making these spectacular shirts for a few years now, selling them through her own online shop as well as through Trash and Vaudeville, Hot Topic, and Urban Outfitters. One might think that with her early success she might have slacked off on quality, however instead Corinne has set up an entirely new line. I won’t ruin it, because it really bears watching, but she’s created a fashion line that is a fairy tale (or vice versa), all beautifully extrapolated in a stunning animated movie on the Love Nico website. A movie, might I add, that I am “in;” I modeled for the character Blue.

I wish I were as talented as Corinne and Celeste, but we’ll see what happens when the academic drudgery is complete. If I can keep it together, I have projects in mind for the summer.

Not all in my head. Or rather, very much all in my head, but not in a made-up drama-queen kind of way.

Aseptic meningitis.

Apparently a rare but normal complication of IVIG.

Ow.

At least I know I’m not crazy.

Or, Why I Didn’t Blog Against Disablism, despite saying I would.

I have to cry like a bitch, now.

Because very few people I actually know, almost none of them in New York, actually read this thing. And because I have to say this to someone. And because I don’t know how much longer this can go on.

I’m finished. I’m over. I have no idea what to do.

I spend all day trying to do my best for these kids, which basically amounts to dragging myself around to keep them fed and in a clean-ish house, and then collapse in exhaustion and pain. MS is the least of it (despite the presence of delicious new lesions on the brainstem, which, aren’t those the blindness lesions? please correct me if I’m wrong)–I’m supposed to follow up on tentative diagnoses of RA and epilepsy, which… really? As my stepfather said when his business fell apart, what am I, Job?

Theoretically, I had finals this week. I did not attend.

I will be trying to retake them–the school was aware of the relapse and everything is properly documented.

If.

If I can get one single second. One good day. One fucking reprieve from all of this. A minute’s less pain so that I can read something. Write something. Do something.

Or should I just amp up on Provigil, go in, and retake them cold? Likely failing? Just to get the semester over with?

I haven’t slept well in such a long time. I was awake screaming at 5am, to the point where my husband had to take the baby outside for an early-morning neighborhood walk.

I will not be posting until I have something better to say than this.

My university has been transformed into a simulacrum of Hell.

I took one week away to recover, and recover I… well, haven’t, actually. There’s a possibility of another course of steroids, but I think I may just have to come to terms with the idea that I just got another little dollop of permanent symptom interestingness. After all, to quote Trevor Goodchild (so much sexier than Nietzsche), “that which does not kill us makes us stranger.”

Which is of course all good and well and I’m just so fucking thrilled at not having aspiration pneumonia that I’ll take all the rest of it as just part of what makes me me. However, much like last year, my very-posh-looking college cannot seem to get the fucking climate control together. And I’m having a tantrum about it.

Right when I most do not need to be sicker, in fact right at a point when I could really use some time resting in an ice-cold room, the whole damn place is blazing hot. This is some sort of situation whereby since it “isn’t supposed to be this hot outside yet” (whatever that means), the AC (which is manned by humans who presumably can look at a fucking weather report) “hasn’t been turned on yet.” The hell? Sorry? “Turned on…” is this a switch of some kind? Can I turn it on for you… no, really, don’t get up, happy to do it!

A few questions that run through my mind, in the classroom, when I’m supposed to be getting ready for finals:
It’s fucking hot in here.
Is this AC thing a “reasonable accommodation”? It’s expensive to turn on AC… but they keep claiming they “mean to,” and that “it will be on any day now.”
Could this bring on an attack?
A real one?
Could I get brain damage from this?
Then how is it any different from them* coshing me in the head with a brick?
Should I get a cooling vest?
Can I get them* to pay for said cooling vest? I can’t afford it.
I’m going to look like an ass in a cooling vest.
Well, whatever. I already walk like a drunk, and cover my ears in class when anyone claps or more than two people speak at once. And I’m old. Bring it on.

*them=everyone at my school responsible for this AC situation, from Facilities & Maintenance up to the President of the college, who I used to really like and now feel is sort of indirectly responsible for refusing me some cool air while the grounds crew uproots all the flowers and plants new ones for the fourth time or so this month.

I rode home tonight behind the Escalade Avenger.

No bully like his fellows, this big, sleek, shiny, black machine seemed placed on the road entirely to enforce highway etiquette–with extreme prejudice. Never have I seen a driver marry that kind of finesse with the serene knowledge of the serious mass of his car.

See, there are about eighteen places on my drive to school where a jackass can pull out and try to sidle up past all the cars waiting in line, only to nose his way back in when he’s managed to get himself a few cars closer to where he needs to be and piss off everybody. Not today. Escalade Avenger wasn’t having that shit, oh no. A master of The Block, he deftly planted himself in the path of anyone attempting to pretend the little bike lane/shoulder was another lane (made just for them), leaving no doubt in anyone’s mind that he was in charge, and such shenanigans were not going to be tolerated on his watch. A Murano actually pulled onto the shoulder at the disgrace of it all.

And for a few minutes I forgot how I feel about Escalades.

Escalade Avenger, your show of strength, how you took it on yourself to make the road safe for all of us… well, how could anyone argue with that? How could anyone hate you? If you didn’t do it, who would? I kept my little sea-blue Street Cruiser neatly in your wake, and knew I’d be safe from any rush-hour injustice. I lost you on the freeway, but that’s okay. I knew I’d be all right.

Seriously, guys, it was something to see. This guy was letting no one get away with anything. Triggered all the absent-daddy issues, and now I feel like a collaborator in the halls of power, leaning up against the SUVs because they’re strong. The guilt–I feel like I should go key my own car.