Mercy

Not all caregivers are nice people.

I can say that with impunity because four years ago I ended up with a multitude of self-appointed caregivers. Some people were actually pretty good sources of support. And some weren’t caregivers but just came to visit and didn’t treat me like a freak. Like my friend and next-cubicle coworker Randy who clued into what a lot of people missed and brought me some books to read. Come to think of it my supervisor also brought me some magazines, along with info on the rights of committed individuals in the Quebec Health Care system.

But possibly the worst self appointed caregivers were my roommates.

I did get out for a week and then had to go back. It was an awful week. I’d been trying to communicate that I wanted them to find another place to live, because they were acting fucked up, but they kept ignoring me because I was “crazy.” Once they even started talking about me in front of me amongst themselves. Not only that, but oftentimes they would look at me with total disgust. It was really awful and it hurt my feelings but I had no idea how to show that. And then there was some abusive stuff that happened which I only remember in the sketchiest fragmented way, I know I was physically assaulted just before I went to the hospital again. By now they were so fucked that I was really happy to see the paramedics and get away.

So I ended up back at the hospital. And when I called to check my message manager the code had been changed, because I couldn’t be trusted with an answering machine. They had a really patronizing message on the machine all about loving me, but they refused to return any of my calls and never came to visit for the next four weeks.

During those four weeks I tried over and over to evict them. I left a verbal eviction notice on my hijacked machine, but nothing happened, except that now I was hearing from other friends that one of the roommates expressed thoughts of kicking me out into the street. Bear in mind this was my apartment, all the utilities were under my name (including the phone), and I was the only one with a full time job.

It was getting to a really scary point where I knew I was going to be released soon, but I didn’t want to go back to those people and they weren’t respecting the fact that I had given them an eviction notice. The landlord was starting to get upset too, not with me but with them. The boyfriend had some loud party and the poutine chef downstairs had to run up and get them to keep it down. I think the landlord was considering eviction, not for crazy me, because my family had let him know I was in the hospital, but for the bad bad roommates who he was worried were trashing his apartment.

To explain how extreme that is, picture this: The apartment walls were riddled with bulletholes, someone punched two holes in the walls, paint was peeling everywhere, and this was from previous tenants. So he wasn’t fussy, but something was making him draw the line.

So I felt trapped in a corner, I had one key to my apartment which I had left at work and told my Dad to get it and change the locks. He did get it, but James, the bad roommate, knew about it and locked that door in another way so the key wouldn’t work. The landlord let him in, the locks were changed, and holy hell broke loose. I was going to let them come back for their stuff, but I was damned if they were going to evict me from my own apartment and keep all of my belongings.

What followed was even MORE drama. James Diamond threatened to kill me and my entire family. My father went to the cops and I nearly got a restraining order. When I got out he started a long campaign of stalking me, including harassing phone calls several times a day. When I confronted his girlfriend about it she tried to justify it by saying I had been pretty fucked up in my phone messages. I said “Well I was committed for being a danger to myself and others, what’s his excuse?” Not only that, but he stole several things from me, including some objects with sentimental value.

I should also point out that James had his own apartment.

But possibly the weirdest thing was her saying to my dad “But how can we care for her if we don’t even live with her.”

Sometimes the best care someone can give is admitting they are incapable of caring for another person and just backing away.

I have never said the words “poutine chef” before. It’s kind of funny.

I am not responsible for your discomfort

I am still thinking about the fact that we as a society are still more concerned about protecting the sensibilities of the non-disabled than the rights of the disabled.

Anyone with disabilities will have a whack of stories to tell you about fucked up encounters with the temporarily abled. My friend Preston, who is blind, had some really weird stories from when he went to Germany this summer. In the airport his cane was x-rayed no less than three times, and when he went to board the flight his cane was actually taken away. What did he do to protest? He deliberately walked into a wall. He sees shapes and light, so he knew it was there, but he’s a cheeky guy who isn’t afraid of confronting people with their own weird shit around his disability. When he was in Germany people kept buying him beers because they had never met a blind person before, most of them are kept out of sight of the general public. Sometimes even we forget how different his life is. Over the holidays my cuz and I dropped by his house one evening and all his lights were off. We weren’t sure anyone was home, but he was puttering around in there. None of his roommates were around, so he didn’t need the lights on.

And I also think of friends I’ve had who have been in wheelchairs and how people assume they can push them around without even asking if that’s what they need at that moment. A woman I mentored in video even had someone say “Aren’t you glad you brought your own chair” when she was at an event with limited seating.

Having an invisible disability is weird too, I can pass if I have to, and a lot of people with M.I.’s (mental illnesses) keep it extremely quiet so as not to deal with the stigma that comes along with it, believe me, everyone is always surrounded by people with mental illnesses, we’re a quarter of the population. But I’m not the kind of person who tries to make my life easier because of other’s prejudices. I’ve had so many stigmatized identities already that one more was like, “okay, I’ll take this fight on too, may as well.” If people ask me why I hate Montreal I’ll say because Montreal psych wards suck. If people ask why I was in the psych ward I’ll own up to the fact that I had a major manic psychotic episode. If people tell me I’m not really crazy because I’m too smart or I look normal or whatever I will emphatically assert that I do indeed have this particular disability.

I’m kind of in your face about my disability, because I think the more people see functioning “normal” people with mental illnesses, the less prejudiced they will be. And it’s true, we’re everywhere. CEO’s can have bipolar disorder, along with artists, writers, thinkers, teachers, high level politicians, PhD candidates and filmmakers such as Francis Ford Coppola.

And even though I’m functioning and can pass in daily life, I also think that people with more obvious M.I.’s should be treated with dignity just as well. Even if someone is having a conversation with you about being the Son of God and they’re blinking constantly doesn’t give you the right to laugh and make fun of them. Nor does it give you the right to permanently institutionalize them because they make others uncomfortable.

When I was first getting diagnosed my state of mind was explained as “excessive happiness” and that my being too happy “made other people uncomfortable.” Having my disability be explained in terms of it’s effect on others was probably why I bucked my diagnosis so much. Had I been told about what the symptoms of mania are and what was going on with my body and how bipolar disorder works, I probably would have had an easier time and I probably wouldn’t have tongued my meds so much. The fact was, however, that my own medical crisis was dramatically extrapolated into the way it was affecting the people around me and how that was my fault. The feelings others were having were worth more than the feelings I was having. I was making people uncomfortable. I was being a huge burden in terms of time people had to invest during my hospitalization. Having a legal aid lawyer to advocate for me so I could get into an english speaking hospital at the very least was considered an insignificant and ridiculous proposition, and a waste of $250.

And then there’s that creepy thing that happens when I out myself to temporarily able people. It’s as if a great relief washes over them because now I’m not a human, and now they assume I am intellectually diminished, and now whatever I have to say can be downplayed as me being “crazy.” It’s called being Othered, and it happens to people with disabilities all the time. There but for the Grace of God go I, how many times have we heard people say this?

Kay Redfield Jameson, a psychiatrist with bipolar disorder herself, has been asked if given the chance she would live without bipolar. I’m paraphrasing, but she said it best. “I would not be able to feel as deeply, to love as passionately.” She goes on to say that the accomplishments of those with mental illnesses have altered and formed our world so much that there may even be a benefit to having something like bipolar disorder, and to get rid of it might be of detriment to the world at large.

Even something as noble as spirituality and religion has been formed by persons with M.I.’s. This doesn’t make these thoughts or concepts less valid, rather it suggests people with M.I.’s may truly be accessing spiritual truths through what is too often pathologized completely as bizarre and meaningless behaviour. I am reminded of what Art Speigleman (creator of Maus) once said about his own psych ward experience and mental health crisis. A friend advised him “I know we’re all the same person, but you’re not supposed to tell anyone.” It’s very much the same for me. When I looked like I was at my craziest, when people assumed my brain was just no longer there, I was on the most profound journey to spiritual awakening than I have ever had before or since. I still carry those truths with me even now.

And what do we know? Ashley might be having the most profound journey to an understanding of the universe than we could ever hope to comprehend. Not all knowledge can be transmitted in terms of language or art or books. Sometimes it really is as simple as seeing a Buddhist teacher demonstrate a zen understanding by turning a flower.

Not only that, but as the technology develops so does the ability for people to communicate who otherwise haven’t been able to. A friend of mine who worked a great deal with special needs people said the first thing and the most important to teach was a no command. And it is important. We can ask Sky was she needs or wants and she’ll shake her head until we get to the real thing she’s been after. We can ask her if she has to go to the bathroom and she can say no. I wonder if Ashley’s parents have taken the time to figure out a no signal for Ashley to use, and even more than that, how they could possibly convey what their intentions were so that she could say no or not. And just because she can’t say no, doesn’t mean it’s okay to go ahead.

Which is really what it comes down to. How can we get to a point where when a disabled person says no, that will be respected? Even my disability involves times when my utterance of No is disregarded. Making sure I’m cared for the way I want involves living wills and Ulysses Clauses, and even then the psychiatric system disregards these.

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.

“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.

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.

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.