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.

9 thoughts on “

  1. Oh yeah, I have to add, “obviously” is the wrong word about Sky not having sex, I just don’t think she knows what it involves. But who knows what happens in a Snoezelen room! And a number of intellectually challenged adults do have sex.

  2. So very well said, thank you.

    And here is an excerpt from Say It Ain’t So on the Planet of the Blind.

    When we imagine that by means of surgery and drugs that we’re doing a good thing by making another person’s body and life fit our own convenience we are essentially confusing utility with ethics. Ashley, who cannot speak for herself has been rendered an object in this process. Those in the medical ethics and disability communities who see a connection between this procedure and eugenics are in my view not wrong. I’m very troubled by this story and I sense that my gut reaction is truly the ethical position.

  3. Thanks Stephen, I appreciated the link to your post as well. It’s horrifying to see that people with disabilities are still being treated in this way this day and age.

  4. I read your comment on the brownfemipower blog and was so relieved to see someone else, (for the first time that I had read) discussing the ‘3 month old mind’ claim that’s been made about this girl.

    I enjoyed reading about your sister. It’s great because all to often, when siblings of disabled people talk about their childhood, they whine about ‘how haaard it was, how Mommy and Daddy had no time left over for them, blah, blah.’ Though to be honest, that sort of attitude seems to be encouraged more in autism than other disabilities.

    I’m sure my non-disabled son and daughter will continue to have a good relationship with their autistic brother as they all grow up. They wind each other up as all siblings do, but really love each other and are great friends.

    I wrote a post about this. I usually only write about what the children are up or autism issues, but this struck me as important for anyone concerned about the rights of women and disabled people.

    There are some great comments from Kassiane at the end too.

  5. I’ve heard that “it was so hard” thing from siblings too, but really, lots of things about growing up are hard. A high school friend of mine grew up with an autistic sister, the only thing we ever complained about was having to babysit, and that was just because we were teenagers and wanted to go hang out at the billiard hall and smoke dope. By the way, thanks for pointing me towards your blog.

  6. I have to respond to what Miz said, though she deleted it. It was to the effect of “You have no say unless you are a caregiver.” The fact is, I am a caregiver, mostly of someone with intellectual disabilities, but on rare occasions I do help out people with physical disabilities if they need it. Just because someone’s disability is considered “burdensome” or that caregivers are overworked, is not an excuse to violate the body politic of an individual. The rights of a caregiver do not exceed the rights of the disabled. If someone is not prepared to care for a special needs child, they should think seriously before having children, full stop.

  7. This is one of the best and most intelligent interpretations of the Ashley Treatment I have come across yet sadly a minority one. Do sign up to UK charity Scope’s ‘Defend disabled children’s rights’ pledge. Enough names can help ensure it will never happen over here to disabled child…

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