Disability Rights

Gesetz zur Verhütung erbkranken Nachwuchses

It’s interesting how a step like sterilization on the basis of disability can have so many more repercussions socially. If you start medically interfering with the most vulnerable in society, it opens all kinds of doors. I’m not going to write much myself in this post, but I did want to post some excerpts from the United States Holocaust Memorial Museum.

“The forced sterilizations began in January 1934, and altogether an estimated 300,000 to 400,000 people were sterilized under the law. A diagnosis of “feeblemindedness” provided the grounds in the majority of cases, followed by schizophrenia and epilepsy. The usual method of sterilization was vasectomy and ligation of ovarian tubes of women. Irradiation (x-rays or radium) was used in a small number of cases. Several thousand people died as a result of the operations, women disproportionately because of the greater risks of tubal ligation.

“Forced sterilization in Germany was the forerunner of the systematic killing of the mentally ill and the handicapped. In October 1939, Hitler himself initiated a decree which empowered physicians to grant a “mercy death” to “patients considered incurable according to the best available human judgment of their state of health.” The intent of the so called “euthanasia” program, however, was not to relieve the suffering of the chronically ill. The Nazi regime used the term as a euphemism: its aim was to exterminate the mentally ill and the handicapped, thus “cleansing” the “Aryan” race of persons considered genetically defective and a financial burden to society.

“Fearful of public reaction, the Nazi regime never proposed a formal “euthanasia” law. Unlike the forced sterilizations, the killing of patients in mental asylums and other institutions was carried out in secrecy. The code name was “Operation T4,” a reference to Tiergartenstrasse 4, the address of the Berlin Chancellery offices where the program was headquartered.

“Hitler ordered a halt to Operation T-4 on August 24, 1941. Gas chambers from some of the “euthanasia” killing centers were dismantled and shipped to extermination camps in occupied Poland. In late 1941 and 1942, they were rebuilt and used for the “final solution to the Jewish question.” Similarly redeployed from T-4 were future extermination camp commandants Christian Wirth, Franz Stangl, Franz Reichleitner, the doctor Irmfried Eberl, as well as about 100 others – doctors, male nurses, and clerks, who applied their skills in Treblinka, Belzec, and Sobibor.

“In all, between 200,000 and 250,000 mentally and physically handicapped persons were murdered from 1939 to 1945 under the T-4 and other “euthanasia” programs. The magnitude of these crimes and the extent to which they prefigured the “Final Solution” continue to be studied. Further, in an age of genetic engineering and renewed controversy over mercy killings of the incurably ill, ethical and moral issues of concern to physicians, scientists, and lay persons alike remain vital.”

For further reading check out The Origins Of Nazi Genocide by Henry Friedlander. Here’s the blurb from USSHMM’s site.

“In chilling detail, The Origins of Nazi Genocide traces the mass exterminations of Jews and other victim groups back to the first secretive murder of a handicapped child in a state-run euthanasia clinic. With little popular opposition, the killing of the handicapped evolved into the Final Solution, the methods of euthanasia foreshadowing the extermination of millions. “

***Additional***
I am tired of making newer and newer posts, so I’ll just add this on. At dinner we were talking about the long term ramifications of the “Ashley Treatment” on Ashley X herself. Having investigated the possibility of hormone treatment related to my own trans issues, I know that a large dose of hormones over a period of time has a risk of causing cancer. It’s not a decision to be taken lightly that’s for sure. Not only that, but removing breast tissue is not a guarantee against breast cancer. In fact, not having breast tissue means tumors can grow in places that are very difficult to remove. As much as I think about this, I can not say that any part of this treatment benefits Ashley.

Emily Carr, Ex Girlfriends, Filmmaking

Digital Blehs of the Afternoon

Editing is my favorite part of making films and videos. I even like old school editing with actual strips of 16mm workprint, and destructive linear 3//4″ to 3/4″ editing. But for most of my career we’ve had fancy computer editing programs. I remember when they first came out video art went through an awkward phase of computer editing overload. Every effect possible was used, to the point where a serious look at race or class could be upstaged by a constant fly in transition to another interview subject. I mostly avoided that phase, primarily because I was broke and taking advantage of the fact that the last few linear editing suites were dirt cheap. Generation loss be damned, I was making a 5 minute video for roughly $80.

But I really do like the way editing has changed with technology. When the technology works it’s a pretty intuitive process. There’s a lot more freedom. People compare it to the leap between typewriters and word processors.

That being said, ten hours of editing inevitably involves two hours of troubleshooting and two hours of rendering. If you’re really good it might be a smaller ratio, but you will always always have to spend some of your time tinkering around with settings and so forth. If you want a predictable workhorse, old school editing is where it’s at.

But I kind of like the inevitable problems. It’s like a puzzle.

Unless you have a deadline in four hours and are beginning to suspect a process circle is just an “ahhhh! I don’t know what to do with the program!” circle.

I’m transcoding some video, and when I read the manual for the program I’m using it said something along the lines of “Don’t be surprised for this process to take a day or more depending on your computer.”

It’s like rendering.

Rendering takes a really really really long time. Or it used to, I don’t know if it’s better now. I used to set my video to render and then walk away for an hour and drink coffee and smoke with my film school pals, and the ever suffering intermedia students.

Intermedia students had the shittiest program at Emily Carr. It was a grand idea, but since they never had priority for various media classes they ended up not being able to learn a lot of things, like 16mm film. I remember an ex-girlfriend of mine used to try to compensate for being in crap Intermedia by signing in for twice the allowed number of editing hours by using the name Maya Deren.

She was nervy, that’s for sure. She did it for two years before anyone noticed. How an art school can overlook Maya Deren using the editing suites is beyond me. You practically get assaulted with a print of Meshes of the Afternoon as soon as you walk into the film department. The second film print they whack you with is Un Chien Andalou, which has some creepy misogyny in it and I still get grossed out with the razor and the eye scene.

My friend Elaine and I were having a beer once and talking about film and she said “I know we’re supposed to like Peter Greenaway and oh, he’s so amazing blah blah blah, but he is FUCKED UP about women, it is so creepy! Why do we have to like this guy?” I love Elaine.

It has been two hours and only seven minutes of video have been rendered.

Well, I think I’m nearing the end of this video process, so I should go do other computery things to it. Here’s scenes from Meshes of The Afternoon and other Maya Deren clips set to Aphex Twin care of YouTube.

Humour

1 minute 5 second Respite from Ashley X Debate

If you’re like me you’ve been jumping from comment thread to comment thread defending the integrity of intellectually and physically disabled people against shockingly hateful invectives and ignorant assumptions. It’s wearing me out, but I’m happy to be finding the bloggers I’ve found, obviously I need to update my links. And what the hell!? Some otherwise forward thinking blogs have totally ignored this, like Feministing. Anyway, here’s a little over a minute of respite with my current favorite reimagining of a Disney Film, Mary Poppins.

Scary Mary by Chris Rule, with the premise of Mary Poppins as a horror film. Enjoy.

Bipolar, Psych Service Dog, TLE

An update on Mister

Mister is starting to get over his barking since we got The Collar. He’s doing really well so he doesn’t wear it much, pretty soon he won’t wear it at all. He definitely doesn’t bark for five minutes on end anymore. And not being so barky is improving his social skills, he used to just skuttle under the couch and now he’s actually walking up to visitors and being cute. The trainer said it would probably take a year to get him over his shyness, so that’s the number one thing I’m working on before he goes into more advanced out in the world service dog work.

For people who haven’t heard about Mister, he’s a long haired mini dachshund who I’m training to be a psychiatric service dog. I haven’t trained him to remind me to take medication, but that’s on the list. He’s trained to wake me up in the morning, and he’s really good at it. I have a hard time waking up because of medications and I can often be really crabby too, but being woken up by a happy silly little dog is a pretty decent way to start the day. He helps discern hallucinations in a totally unobtrusive manner, because he is very alert to sudden noises. And most of my hallucinations are random noises more than voices. He also calms me down really well, especially if I’m upset or scared by something. And if he knows something is really really wrong with me he’ll lick my face until I’m responding in a more even way. If I do have TLE like I’m pretty sure I do, then he’ll also be able to alert me to oncoming tonic clonic seizures (grand mals they used to be called). I usually have completely different seizures, but I’ve had a couple tonic clonic seizures in my life and I probably have some more coming.

He’s so smart, but he’s a brat and he knows how to get away with stuff. He’s come out of his shell since we got him, so I’m letting him have a little leeway to get silliness out of his system. Even when he is a fully trained service dog, he’s still going to spend a lot of his time being a regular dog anyway. He might end up being an emotional support animal who can aid in a few ways, but I really am sure he’s smart enough to get more training. The other night I found out he knows the command for roll over! If you’ve never seen a dachshund roll over on command you don’t know what you’re missing. He was raised to be a show dog, so he does take to training and there are a lot of things he knows that he doesn’t tell me.

Even if his training doesn’t advance any farther, he’s still made the biggest difference in my life since my diagnosis, even more than medication. I’m pretty lucky to have him, he’s a good boy.

Disability Rights

Oh now I’m really mad!

I’ve been surfing by some blogs about Ashley X and the ethics around it and holy shit! Some really good stuff from other disability rights folks and similarly educated and aware people (Gimp Parade, Planet of the Blind, Definition – A Feminist Weblog, Did I Miss Something) and a hell of a lot of outright hatred towards the intellectually disabled from a lot of people in surprising places.

I like to pretend for long stretches of time that people don’t hate folks like my sister, but they do. And as much as it hurts, as fucked up and downright evil as it is, there isn’t a lot I feel like I can do. I have been as close as you can be to someone with an IQ of 23 for 28 years, and I know that she is completely and fully human, like all of us. She has feelings, she has memories, she has preferences around movies and clothes and foods. She even has crushes. She went through a horror movie phase when she was fifteen like any other teenager. She has a personality, she’s funny and she will let you know when she thinks you should just fuck off and leave her alone.

But since she can’t communicate like you or I, she can’t jump on the web, start her own blog, and tell people that this case is a malevolent step towards eugenics.

It also says a lot about disability and sexuality.

I also have a brain related disability, I’ve got bipolar disorder. It’s a disability, and I’ve had it forever, and I’ve compensated and found ways to manage it. If my hunch is correct and people still equal mental illness with mental retardation, then I imagine a lot of people would think “Dear god, if I had to live like you I would kill myself!” And yeah, finding out for sure I have manic depression was harsh, and I did think about suicide, but for some really specific reasons, mostly involving the treatment of people with my particular disability. But really, I’ve never known any other way of life. Emotional extremes and voices and a host of other symptoms are just part of my routine, just like taking morning medication and evening medication and having my blood levels checked have become part of my routine.

I think having normalcy as much as possible is important for people with disabilities. I have trouble with large crowds, but I still need to go to grocery stores so I go at hours when the crowd is thinner. I will never be able to go to Superstore for groceries, but then I don’t really think a gargantuan store like Superstore is normal anyway. I know for my sister anything that happened in her life that was a normal part of growing up and aging was really important to her. When she got her period and I was still a teenybopper, she was very smug because finally she had beaten me to one of the milestones of female life. She was very aware of what other people her own age were doing. And like I said in an earlier post, she does very much have a sexuality. And that is completely normal to any person, and something she is completely entitled to. So what if someone else is not going to benefit or participate in her sexuality, it is still valid to her life, and it still has meaning for her.

My own experience with being disabled and still a shamelessly sexual person is from when I was in the hospital. There were a lot of things going on in the interactions between myself and the staff, related to gender, queerness and race, but the creepiest by far was the treatment of my sexuality. Any romantic or sexual feelings I had were fodder for appointments with my pdoc, and being humiliated over and over under the name of psychiatric care for having crushes was pretty demoralizing. I wasn’t running down the halls masturbating, I was just giggling about cute girls.

The impacts of psychiatry on sexuality doesn’t stop there though. Most psych drugs also have a “side effect” of eliminating libido and/or the ability to achieve an orgasm. It’s called a side effect, but some in the anti-psych movement say it’s a deliberately created symptom. One drug I was on wouldn’t let me have an orgasm for about eight months, which was so unbelievably frustrating. Of course going to the doctor to complain about this wouldn’t do anything, because I was making “progress” in other areas, like not uncontrollably crying in a phone booth.

A few decades ago I probably would also have undergone an unwanted hysterectomy. In another time period I could also have been at risk of a clitorectomy in case having sexual sensation was adding to my psychiatric condition. In other times I would be murdered by the government. My aunt went through memory erasing ECT in the 60’s. And in contemporary times if I act in an unusual fashion I’m at risk of having to spend between 72 hours to 30 days in a psych ward under very strict conditions until other people decide that I am normal again. I had a friend in the hospital who was on so many medications he was unable to ejaculate, and it was one of the things that upset him the most.

People don’t like the idea of disabled folks having sexuality. It creeps them out for some reason. I remember one time in Life Drawing class at Emily Carr we had a model who was a quadraplegic come in. The professor chose him so we would be able to draw people with different body types. He was talking to us about his life as a disabled guy and she was fine with that, until he said we could ask him how he has sex, which made her really uncomfortable and she asked him to just be quiet and let us draw him. It was really strange. Anything else about his life was fine for discussion, but having sex was certainly not.

One more thing I’ve been thinking about the Ashley issue is this: all of those surgeries are pretty hardcore. Removing a uterus itself is a major surgery, and takes a year to recover from. From my experience with my sister, I know she has a terrible fear of doctors and hospitals. She gets so upset and even getting her teeth cleaned and fixed involves putting her under general anesthetic. I know there’s a possibility that someday she might have to undergo some kind of surgery, but based on her fear of hospitals and the fact that a major surgery would make her really unhappy and traumatized for a long time while she recovers means our family would only put her through that if medically necessary. I hate to think of what Ashley would have been feeling going through a breast removal, hysterectomy, and appendectomy.

The fact that these surgeries target her sexuality specifically also makes me wonder a few things. They say that they’re afraid of her being raped. Well, rape is a violent act directed towards someone’s sexual self. Given that definition, how can we honestly say that these surgeries are not a form of rape?

One thing Ashley had in her life that was like the rest of us was the ability to grow up into a physically adult woman’s body. And now she doesn’t even have that. And people are celebrating, even though it’s given her an entire new layer of disability to deal with. Her parents have known her for nine years. Who she is today isn’t going to be who she is 10 years from now, and like someone else said somewhere, it horrifies me to think that one day she’ll realize her parents kept her from ever being able to look like an adult.

Art, Same sex Marriage

I heard . . .

I don’t often get good gossip (I lie, I’m quiet and I get good gossip all the time) but I hear a reputable rumour that Annie Sprinkle is getting legally married within the week in a prairie city. I wanted to go see it, but I don’t have a car, or money for a bus ticket, or even the time to leave some work I’m doing. I wanted to actually meet her without running away.

And now the source of the rumour who is probably reading this is kicking my ass and yelling “Shut up Thirza!”

Hey, it isn’t secret after all! Here’s the scoop:

Annie Sprinkle & Elizabeth Stephens • Yellow Wedding #3: Courage & Power

That’s right: It’s a wedding AND a performance. Members of the Harper Cabinet are especially welcome.

Ex-porn star, sexologist and performance artist Annie Sprinkle, and sexy dyke playboy, experimental artist and professor Elizabeth Stephens are madly in love. They have vowed to have a wedding every year for seven years, partly in protest against the anti-gay marriage movement. This, the third wedding in the series, and the first in Canada, takes advantage of our laws to legally bind the two blushing brides. Be a bridesmaid, groomsman, tranny ring bearer or do your special wedding thing. Or just enjoy the show.

Politics

Saddam’s Snuff Film

Okay, I’ve finally gathered my thoughts about this whole turn for the worst which has happened with Iraq. As soon as I found out they were going to execute Saddam, I just thought “Oh fuck, that is a REALLY bad idea.” My other friends concurred, it was really just like watching a car crash in slow motion. Don’t do it, don’t do it, aw fuck, you went and did it! Even my tattoo artist and I talked about what a bad idea it was. I forget where I read it, but someone even said George W. Bush was so incompetent he ended up making Saddam look sympathetic.

Now up here in Canada we’re just looking around at each other blinking and sighing and agreeing that the next year in Iraq is going to make the last four put together look like a cake walk. Not only that but now Bush is instigating a troop surge, which was what happened in Viet Nam to kick off the most massive American death toll and ended up with them losing the war anyway.

Because really, that war is so unwinnable. (Unwinnable isn’t a real word but I’ll use it anyway). Once the fighters change from soldiers to civilians it’s pretty much over.

And besides that, this whole thing smacks very much of the pot calling the kettle black. American and UN sanctions against Iraq killed more Iraqis than Saddam ever did, and adding the death toll from the current war seals the deal. Of course a number of Iraqi’s have turned Saddam into a martyr, a hero. He held their country together even when 5000 kids died a month from malnutrition and lack of medicine.

Ever since he came out of that hole and through all the indignities and violations of the Geneva code he was put through by the Americans, he was fuckin’ dignified. I wouldn’t believe it either, but woah, he handled himself really well, he was securing his role as a martyr even as his captors jeered at him. I think he knew he was going to die, any time a judge felt sympathies towards his case they got fired. It was a pretend trial and had nothing to do with an international court of justice.

As soon as I found out they were executing Saddam in a matter of hours, I looked up the Eid holiday. Eid is the celebration after Ramadan, a time for thankfulness, forgiveness, happiness, a lot like Christmas, but without the Christ. It’s a really important holiday to Muslim people and hanging him at the beginning of it was a clear Fuck You to Islam. Shiites were celebrating, but the rest of Iraq was appalled. And now Saddam’s not just a martyr to Iraqis, he’s a martyr to Arabs in a lot of other Middle Eastern countries.

Having his execution posted on YouTube and other assorted online sites was just, oh man, ANOTHER really bad idea. That pushed it over the edge for people. Political snuff films are still snuff films. Even the footage of the twin towers was a snuff film. And the way he died, the floor dropping while he was in mid prayer, that was really affecting stuff. It was like the end of Dancer in the Dark, only it wasn’t Bjork, and Catherine DeNeuve didn’t have a cell phone.

If we had a better, more human Prime Minister who actually reflected the feelings of his people, Canada would be vociferously condemning the execution. I haven’t talked to a single Canadian yet who thinks it was okay.

It’s sad, because 9/11 was the most amazing opportunity for America and the rest of the world to sort out why bad feelings are directed at the US. Internationally people were shocked and saddened as much as Americans, but also with this feeling of “Well, yeah, we do hate you, and we have a lot of reasons.” We sympathized. We understood. America could have completely changed it’s foreign policy, things could have been really amazing, and a lot of nation to nation hostilities could have ended.

But you know, America as we know it was founded on genocide and has stuck to those guiding principles for most of it’s existence.

Canada is also founded on genocide. A lot of countries are. Canada still blatantly practices genocide towards it’s First Nations people, and we still have armed skirmishes, although I’m not sure that comes out in the news often.

Either way, mostly I feel like I’m just watching this fucked up bloody gory horror film that may never end. I know the new spin is that the Iraqi government made the decision to hang him, but all of that process was controlled by the American government and everyone knew it.

Bleh, I feel like writing about something else now. The tattoos are getting all flaky and scaly now, I don’t much like this short phase. I feel itchy and sore and I can’t do anything about it.

Art practice

Bitch Slap Joni Mitchell

This mini press release is going to show you how much of a flake I can be. A group show I am in at the Mendel Art Gallery here in Saskatoon will have it’s opening on January 19th, at 7pm. I will be showing an as yet unnamed video installation work which textually poaches the Miracle Worker bitch slap scene and through the use of an experimental soundscape and text discusses abuse towards the disabled masquerading in the guise of treatment. I do not remember the group shows name, but my friend Megan Morman is also in it. Megan, what is the name? Adrian Stimson is the curator. I may buy contact lenses with my artist fee. The Mendel often has crowd overload at their openings, so if you can’t find me go look under the banana tree in the conservatory. I drink Corona. My other friend Rebecca Belmore is having an opening then as well from some of her work in the collection. I have no idea if she will be attending.

It’s eerie timing, I’ve been working on this video for three months and then this whole Ashley thing exploded.

By the way, if anyone has found Joni Mitchell’s face please bring it with you.

Catastrophe, Environment, Politics

Cedar Waxwings Make No Mistakes

The best opening sentence was in the Star Phoenix today. “On a dead of winter day with every major Canadian city basking in freaky grass-growing temperatures, Prime Minister Stephen Harper stood outside 24 Sussex Drive Thursday clad only in a business suit to declare climate change his government’s new and pressing priority.”

Stephen Harper is the fuck ass Conservative Prime Minister the majority of Canadians hate, but ended up in office in one of those freaky things that happen as a result of having multiple political parties. He’s going to be booted out soon, I’m sure, since we’re pissed about being in Afghanistan and we’re pissed about his budget cuts and since he can do barely anything since he’s running a minority government. Not only that, but he shamelessly sashayed away from the Kyoto Accord and proposed to devise a “Made In Canada” approach to environmental issues. And why not, since our Made In Canada superstacks are successfully exporting pollution to Mexico.

It is a freaky winter. And I don’t want to have a crap winter because I have a new Cross Country Ski set!!! I hear a cherry tree is blooming in New York. New York. In JANUARY!! My mom’s noticed the Cedar Waxwings are back already, three months early. And you know nature knows more about what’s up with the weather than us. Cedar Waxwings make no mistakes.

Okay, I don’t know if that last sentence is true, but it’s awfully cute. Infalliable Cedar Waxwings.

I could make a really good argument for why capitalism is holding us back from making real headway into grappling with environmental issues, but I think you probably understand. Our current gas reduction plan here in Canada spans the next 45 years, completely ridiculous since we’ve already reached peak oil, and the majority of oil now is in oil sands, which are notoriously difficult to extract and process, and thus will ramp up prices and create more pollution just getting it out of the ground. It’s stupid. I don’t even care about ever owning a car because I don’t want to add to the problem.

The weather IS weird. I’ve been kind of following the shit that’s gone down in Vancouver last year, snow, hurricane winds, brown water, bleh. One of the reasons I left Van is that I felt “Oh shit, it’s all going down man!” I’m more predisposed to following my hunches than other people, considering in my family we have eerily accurate intuitive sense. Our reserve even managed to petition for day schools to avoid residential schools because some of my ancestors knew what was going to happen. And just a few nights ago I compelled my cousin to go half a foot over to the side of the road while going over a hill, and saved us from a head on collision with a dangerous driver. Anyway, yes, things are pretty messed up. My Saulteaux friend Laurel says her tribe believes people have to go back to their home regions for seven years while all the shit hits the fan. It’s making a lot of sense to me.

Saskatoon is actually a really good place to live in the event of a catastrophe or crisis. There is a lot of wild game, we have really good soil for farming, a smaller population means provisions and aid is required on a smaller scale compared to large urban centres. And I’m pretty skilled in survival, I know how to shoot, fish, build a fire, camp, determine north without a compass, cross long stretches of bald prairie, and walk out into minus 60 degree weather without dying. I remember one time in high school we all arrived and were appalled to find out it was minus 60 with the wind chill and yet school hadn’t been cancelled. But really, that’s Saskatchewan for you.

Disability Rights

Growing Up with Sky

Sky’s my sister, she’s three years older than me. She has an extremely rare syndrome involving a translocation of the thirteenth pair of chromosomes. When I was a little kid and wanted to know why Sky was the way she was I got a long explanation complete with diagrams of Sky’s thirteenth pair of chromosomes and an explanation of chromosomes themselves. Very simply, a chromosome is x shaped, with the top of the x being smaller and the lower being longer. Sky has a chromosome that has an x which is small on both top and bottom, and the other chromosome is long on both top and bottom. So no, I never got the “She’s like a two month old” explanation. And she’s nothing like a baby either.

When we were kids we slept in bunk beds, she got the bottom one because she peed the bed regularily, and I was on the top, so she couldn’t pinch me. Which didn’t stop her from trying. I had to sleep in a straight line perfectly centered in my bed because at night a little hand would creep up the sides of my bed and reach around trying to pinch me. She got me several times too. Really we had a sibling relationship like anyone else, I felt protective of her and loved her and got really upset when people were mean to her, but she also drove me crazy like only a sister can. She knew how to get a rise out of me like poking me over and over until I screamed. I never slapped her, or punched her, or anything like that because I knew she just didn’t comprehend that she was being an ass at times. I remember one time she was really going after me, wailing on me, pinching me, trying to bite me, pulling my hair. I snapped and grabbed her and lifted her up and almost threw her down until I thought “Oh my god! I can’t hurt Sky!” but she was still annoying me, so I did the next best thing and tossed her onto the couch. Of course then she was all happy that we were playing a game and came back for more, until my mum distracted her. She’s not a jerk anymore by the way, like most kids she grew out of it.

Raising her was a lot of work for my mom, and a lot of Sky’s behavioural problems seemed to stem from her inability to communicate very well. She’s got more communication skills now, not verbal ones but she’s very clear and concise about what she wants or needs. Either way, she was very frustrated as a kid and a teenager, and I think she even suffered from bouts of depression related to struggling to deal with the difficulties of her life. She’s a pretty happy person, but yeah, I noticed she went through periods of deep introspection while we grew up. I also suspect she was abused, though of course I can’t prove it, but we did notice there was one year where she was very upset and cried herself to sleep all the time. And when she was a little kid once the bus driver didn’t bring her back home because he thought she was so cute, CREEPY!

I think maybe growing up as her equal more or less, being sisters, let me know her in a different light than maybe even my mother sees her. And I know she knows me a lot more than other people, because one time when I was very seriously contemplating suicide she spent the entire time we had together hugging me. Watching her sexuality develop has been pretty trippy too. She doesn’t kiss or have sex obviously, but she’s very boy crazy, at the dances for other challenged adults in Saskatoon she was known as the girl who steals people’s boyfriends. She blushes when she sees a handsome man, jeez, I mean she’s so heterosexual! She even has a boyfriend now, a man who essentially has the same syndrome as her. They sit in the Snoezelen room together and giggle.

Her life also completely changed when she moved out of the house. It took her a while to adjust to living in a group home, but now she has a more active social life. She goes to movies, dances, she went to a New Year’s Party, this last year she won a 20 pound turkey for us at bingo, she walks in the malls, they take her out shopping. She has a job sorting paper in a newspaper recycling facility staffed by challenged adults, usually she does a couple sheets and then walks away. She recognizes things about people, like if they are aboriginal, mentally handicapped, butch. It’s true! She knows what butches are, it’s really funny. A butch lesbian used to work in her group home and she always called her by my name because apparently all butches are Thirzas. She can also point out art work made by her mom and dad in art magazines. Her favorite movie used to be Flower Drum Song. I don’t know what it is now. She’s also responsible for making me watch Drop Dead Fred 200 times.

Now that I’ve told you all about my sister, I’m going to address the “Ashley Treatment.” First of all, if you don’t know about this, an intellectually and physically disabled child whom they call a “pillow angel” was put on hormones to stunt her growth, and had a hysterectomy and breast removal. The reasoning is extremely bizarre, the parents wanted someone easy to lift, they thought menstruation would upset her, if she was sexually abused she wouldn’t get pregnant, and if she was made to have a child’s body she wouldn’t be sexually abused, and not having breasts would keep her from having discomfort. There are so many holes to this argument and so many faulty ethics going on that I’m not able to address all of them here.

The first and most obvious point is that sexually assaulted people are not all people who have developed adult sexual characteristics and signifiers. Kids get assaulted, even babies get assaulted. Anyone at any age can be assaulted, and getting rid of boobs isn’t going to stop it. Secondly, they justify the breast removal by stating the family has a predisposition towards large breasts and that large breasts are uncomfortable. Well, some might agree. All I can say is I have E cups, and while sleeping on my stomach is kind of weird, I generally have no discomfort issues with my breasts. I don’t suffocate under the weight of ginormous mammary glands while laying on my back or anything. The only thing that sucks about my boobs is it’s hard to find mens clothing that allows for female chest sizes.

The whole concept of keeping her looking like a child disturbs me deeply. They say that since she has the mentality of an infant, it is grotesque to allow her to inhabit a grown “sexualized” female body. Apparently females with sexual signifiers are only allowed when they are able to be sexual partners. A grown woman with intellectual disabilities is an abomination. Take this quote from their blog:

“If people have concerns about Ashley’s dignity, she will retain more dignity in a body that is healthier, more of a comfort to her, and more suited to her state of development as George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies, alludes to in a related article: “If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity. Nor do I believe this is somehow demeaning or undignified to humanity in general; the treatments will endow her with a body that more closely matches her cognitive state – both in terms of her physical size and bodily functioning. The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.””

If you look at their blog, you’ll find a wealth of disability bashing masquerading as genuine concern for differently abled people. Intellectually handicapped people are compared to wild animals, are called adult babies, and some even say that it is harder to physically abuse a child with these disabilities than a grown person with these disabilities. Oh yeah, ’cause mom and I find it so much easier now that Sky’s grown to slap her around if she gets out of hand. *eye rolling* Not only that, but people consistently complain about how hard it is to move a physically disabled adult. I am certain there are many para and quadraplegics who would rip them a new asshole for talking like that. There are methods and equipment built especially for moving and aiding physically disabled people, and they probably cost far less than all the medical interventions Ashley has been subjected to.

And probably the most worrying, for me, reasoning behind all of this is so the parents can care for Ashley at home forever instead of putting her in an institution. For one thing, there are group homes like where my sister lives, and they can care for very disabled individuals. For another thing, parents die. And having a disabled adult with no system in place to ensure continued care is reckless and dangerous. If you don’t believe me then rent Best Boy, which can make anyone cry for ages.

The last point I would like to make is this disturbing “Pillow Angel” label they place on Ashley and anyone else with comparative disabilities. It refers to the fact that they can put her on a pillow and she stays there. I know they’re trying to be cutesy, but it comes across as patronizing in the extreme and a damning assessment of her identity. I bet they even coochie coochie coo her. Bleh. And also, when I think “Pillow Angel” I think “Pillow Queen” which refers to a sexual partner who does nothing and lets the other one do all the work. It suggests complacency rather than disability.

I think the “Ashley Treatment” is barbaric. I’ll go with the Sky treatment any day.