Not Improved Enough

I just found a journal article I'd photocopied ages ago. It's titled Early Treatment of Menkes Disease With Parenteral Copper Histidine, and was published in 1998, in the American Journal of Medical Genetics, volume 76, pages 154-164.
Menkes Disease is an X-linked recessive condition in which the affected person, almost always a boy, has progressive neurological problems and bladder infections starting in infancy and dies before 3 years. It's because of problems with enzymes involved in using copper. I don't exactly understand how the condition works, but it's fatal.
In this study, they described four boys with Menkes Disease who received an experimental treatment, parenteral copper histidine. One died at 10 years old and the other three were still alive at 20, 18 and 10 years old. One scored as mildly delayed on an IQ and the others scored normal, but all four were slower to learn motor skills and some had other learning differences such as ADD and speech delays. All of them had varying problems with blood pressure, ranging from low blood pressure on standing with no symptoms to repeated fainting and crawling up stairs to prevent fainting. A couple of them used a tricycle thing preferentially over walking because they were less likely to faint. Clearly, they are much better off with this treatment, and just as clearly, they are not normal.
What really angers me about this article is the last paragraph in the discussion:

"However, enthusiasm about the use of copper-histidine treatment in second and subsequent affected males in MD families should be tempered by caution, since the residual abnormalities are quite substantial in all patients, and some of the connective tissue abnormalities may become more disabling later in life. At present, the treatment should still be regarded as experimental and not yet a serious alternative to prevention by early prenatal detection and termination of affected pregnancies for those who regard this approach as acceptable. Copper-histidine treatment is worthy of consideration for couples who cannot accept this approach."
In other words, they're improved, but not good enough to let them live. In the eyes of their doctor, those four boys/men were better off dead than even having that degree of disability. It makes me so angry. If one of the surviving men described here were to read this article, how would they feel to read that the life-saving treatment they received is not considered a serious alternative to preventing the birth of people like them?

Victim of Who?

Recently I was trying to post a response to a parent of an autistic child who said that despite all the bad stuff about the Autism Every Day video, she liked it. She compared it to feminist consciousness raising. In trying to write my response (which was lost due to computer problems) I kept trying to get at what really bothered me about that comparison, without being able to figure out what it was.
After the computer error had happened making me loose my response, and I'd had a meltdown exarcerbated by the fact that my brother had been pestering me to give him a turn on the computer, I realized what the basis of the problem was. Both Autism Every Day and feminist consciousness raising are about speaking out about how the people feel victimized. The important distinction is who they think are victimizing them.
The parents in Autism Every Day seem to think that they are victims of their children. But in reality, both they and their children are victims of society. It's like an abused child blaming her mother for not pleasing her father sexually and 'causing' him to abuse her, taking for granted that he has sexual 'needs' that must be fulfilled and he can't help himself.
I think I've written before about the problems of taking society for granted. If you assume that society's view is correct, and are being victimized by society, you end up either ignoring your victimization or blaming the wrong people/things. My mother told me some feminists had the idea that women needed to be liberated from pregnancy and childrearing. Thay hadn't challenged society's view of those things.

Disabled Boy and Dog Story

There's this 'heartwarming' story circling around, one of those stories people incessantly forward around. I've written about a few of these before, I think.
This one starts with a farmer whose dog has puppies. He puts up a sign 'free puppies'and soon enough, a boy comes over to see the puppies. The man calls them out. The mother comes out, followed by three energetic puppies. Then a fourth puppy comes limping out, noticeably smaller than the other three.The boy says "I want that one." indicating the disabled puppy.
The farmer replies: "You don't want that puppy. That puppy can't run, can't play with you. Get one of the other puppies."
Rolling up a pant leg, the boy shows a leg brace and says: "I don't run too well either. That puppy needs someone who understands."
Clearly, that boy is a wonderful, compassionate boy who empathizes with that puppy. That is what's usually recognized about that story by the people who forward it around. But what about the farmer?
The farmer seems to think that there is only one way to have fun with a puppy, a way that the disabled puppy isn't good at. He seems to think that a puppy who can't run fast is not a puppy an ordinary boy can enjoy. Only a disabled boy who also can't run would want such a puppy.
Imagine how this would feel to the boy. Being told that one puppy is not worth as much as the other puppies because that puppy is different in the same way you are different. No doubt this boy will have been given the message that he is inferior many times, and this is yet another time.
It never stops hurting, though the individual incidents blend together. I was told by many people, directly or indirectly, that I was inferior. My teachers tried to emotionally bully me into conforming, when even if I was willing to conform, I couldn't. Later I had a teacher who I'm beginning to suspect gave me less pressure out of pity and a class full of kids who bullied and/or excluded me constantly. Each incident hurt. They hurt all the more because I was used to being told I was worthless.
I wonder if the farmer's words made the boy even more determined to have that puppy, made him empathize even more with that one puppy. I wonder how that boy felt about revealing his disability to the farmer, about using it to convince the farmer to give him that puppy.I wonder if he felt ashamed of his leg brace, if he, too, thought a boy/puppy who couldn't run fast wasn't as good as one who could.
[Edit: Just as I was saving this, I remembered something else that bothered me about this story. The boy's disability was not immediately apparent, so the farmer assumed he was normal. In talking about the dog, the farmer was speaking as one normal to another, saying things directly that he might have tried to hide from a visibly disabled boy. He assumed that the disabled were the 'other' in that conversation. That, too, hurts. When I'm talking to someone about autism I feel compelled to tell them I'm autistic to keep them from assuming autistics are the other in the conversation. It hurts when they assume I consider myself superior to autistics, when in fact I am one of them.]

Viewing Disabled People as Childlike

Amanda Baggs has recently posted a thing about Bernard Rimland's death. John Best commented with a bunch of nasty comments, one of which was telling Camille that she should giver her child treatment for mercury poisoning 'so that it will be out of diapers someday'. As well as the reference to an autistic child (does Camille even have a child? I can't remember. If so, how would he know if xe is in diapers or not?) as it, this comment also shows the view that being in diapers all your life is a horrible thing.
Disabled adults are often compared to children, and disabled children to younger children than they are. Often this comparison seems meant to devalue disabled people. I've seen people say the same nasty things about newborns (claiming that there's nothing going on in their minds) as they do about severely disabled people. I've seen people describe disabled people as 'perpetual children' in a way that implies that being a perpetual child makes you less worthwhile.
Often disabled people react by insisting they are not like children. But they don't ask why it is that they are being compared to children, or why this should be a bad thing. What's wrong with being childlike? Why are disabled people so often compared to children?
It seems to me that the commonality is dependence. Disabled people and children need more assistance than nondisabled adults. Disabled people and children have more difficulty contributing in the strictly defined way that our society seems to value.
A lot of people seem to view children as being worthwhile mostly because they will be adults someday. People talk about children as 'the future'. It's like children are simply adults-to-be, and what worth there is to childhood itself is mostly in how it prepares you for adulthood. If you consider children's worth to be primarily that they'll be adults sometime, and the care given to them primarily as investing into our future, then a 'perpetual child' would be waste. A perpetual child would be receiving without giving, a burden on others. That is precisely how disabled people are viewed.
But I think there is worth in children besides who they'll be. I find worth in who a child is, right now. Children contribute, as children, things that, though they are devalued by society, are very worthwhile.

Different Ways of Going About Things

Diary of a Goldfish is hosting the 4th Disability Blog Carnival. I don't really know what a Disability Blog Carnival is, but from what I understand, the topic is 'different ways of going about things'. That's a topic I think I can write about now. I'll write about homeschooling, and the unusual kind of education I'm getting, which is so much better suited to me than school.
In school, you are expected to learn a certain way, a way that is not how I learn. The things that were really hard for me were: being with nasty kids all day, not showing my work in math because I a) was doing different steps and b) hate to write (typing is fine, but writing on paper too much tires my hand out so I minimise what I write), having to switch subjects so often and especially having others dictate to me what I had to learn.
I'm now homeschooled. This is suited to me because I learn best alone or with people I like, doing things in whatever way works best for my mind instead of following strict steps, obsessing on one thing until I feel it's time to move on and choosing my own things to learn. I can only motivate myself to put out the effort to learn something if it interests me. If it doesn't interest me, all that happens is that I get frustrated, annoyed and bored.
There are some problems with homeschooling for me right now. That is that since I'm not following any curriculum, people can't do what they seem to enjoy doing - look at my credentials and get a rough idea of what I know. If you know what medical students are taught, and you meet a medical student who knows what Flourescence in Situ Hybridization is (a test to make certain 'marker' genes light up), you know they will probably also know a pile of other stuff taught before or around the same time as that. Since I learnt about FISH by researching Angelman Syndrome in my free time, it came along with other knowledge, not the stuff taught in medical school.
In terms of math, I teach myself math formulas when I need them. I figured out by myself how to determine percentages, and do it by 100/n*x. That's also how I determine IQs, not the ma/ca * 100 you see in psychology textbooks (I like to buy used psychology textbooks to read for fun) but 100/ca * ma.
There is no problem for me right now. The potential problems are in the future. I'll try to get into college, but if they don't accept me or they do but I can't fit with the system, I'll do what I want to do with my life other ways. I'm working on a behavior survey into Kabuki Syndrome which I'll submit to a medical journal when it's done. You don't need a medical degree to publish in journals, you just need to produce work that is of good enough quality.
I'm also writing books. You don't need any credentials to write books. I'm writing fiction as well as a book for parents of kids with chromosome anomalies (and anyone else who wants to know more). Lately I've been researching bats a lot, an old obsession revived so I can write about part-bat, part-human people in a story I'm working on. I'm also thinking of getting jobs such as babysitting disabled people, or maybe working in a petstore.
Had my parents clung to the idea that there's only one way to get an education, I'd be much worse off now. The emotional cost of being in school was too much for me. I might evn have commited suicide - I know I considered it. So it could be literally true to say that by homeschooling me, my parents saved my life.
Ettina
PS: I sound less mature in this one than I usually do. I don't know why. My writing style sometimes spontaneously changes. Sometimes it's clearly because of what I've been reading, like when I'm writing like a doctor after reading a medical journal, but other times I don't know where the change comes from.

Remembrance Day

I thought up this post on Remembrance Day, yesterday, but was too sick to write it. I'm still sick, but not as sick, today. So I'm writing my Remembrance Day post today.
On CBC, they were talking about Remembrance Day. It always bothers me, how people talk about Remembrance Day. But what bothered me the most was how they were now including soldiers who died in Afghanistan in Remembrance Day.
Don't misunderstand - I think those people should not be forgotten. I've got a second cousin who recently came home from Afghanistan, and I spent some time with his mother right after one of his friends died. I saw him carrying the coffin. Remembrance isn't so much for the dead people, but for those who didn't die.
But they were talking about people 'giving their lives for our freedom', 'dying for our country'. Maybe that's true for the World Wars, but it isn't true for the war in Afghanistan. The truth is that the only way Afghanistan could possibly harm us in Canada, US or UK is with terrorism, and the war has, if anything, made it worse. War can't destroy an idea, or at least not very well.
Now we've got people in Afghanistan who have seen people killed by our soldiers. The terrorists will probably find recruiting easier since this war started, because many people in Afghanistan are angry at us. Remember that Afghanistan has been called 'the graveyard of emperors'. This is because they have resisted many outside powers who invaded them.
What we should remember, on Remembrance Day, is not the 'glory' and how 'noble' it was for these people to die for us. We should remember people in trenches with poison gas burning out their lungs, people going about their lives who were suddenly wiped out by a nucleur bomb, people with PTSD because of how awful being a soldier or a civillian in a war zone is, people who poured out of boats in large numbers and died in large numbers running across the beach. There is nothing glorious about war. It is a horrible thing. Sometimes, it is necessary, but we should never forget the people who suffered and died because of war.
My great-great-grandmother is buried in Flander's fields. She and her husband lived in a town near a lot of the fighting in Belgium. They were both very old and lived alone when the war started. They considered moving to escape the fighting, but my great-great-grandmother was too sick to travel. Then she died, and because it wasn't safe to be outside very long, she was buried in the basement. Then my great-great-grandfather fled the country to live with one of his sons. They went back after the war ended, but the place they used to live had become a cemetary. Somewhere in among the buried soldiers is my great-great-grandmother, an old woman who happened to live on the land they were fighting over.
Ettina

videos of trisomy 13 and others

I was looking for videos of people with trisomy 13 (Patau Syndrome) on Youtube, and found the following:

Kutlay
Little trisomy 13 boy, probably 1 or 2 years old, sucking on a water bottle.

Kelsey
An almost 21 year old t13 woman, described as the oldest surviving trisomy 13 person.

There was also this one with a boy who tested as having trisomy 13 on prenatal diagnosis and later had no t13 cells and normal development. They claim he was 'healed' but really it's nothing special, it happens to many with prenatally diagnosed mosaic trisomy. Sometimes the trisomic cells are only in the placenta and not the baby, so trisomy will show up on both chorionic villus sampling (taking a sample from the placenta) and amniocentesis (amniotic fluid, with flaked off skin and placental tissue) but not on blood tests. The only effect in those cases are related to the placenta - premature birth, slow growth, etc. No major structural anomalies or developmental delay, except for that which prematurity can cause.