Tuesday, March 9, 2010

The Baby and the Bath Water

I do try to see the other side of things. I think most of us do. But sometimes it's a huge struggle for me.

I just read this article online. I've been seeing the sensational headlines all day on my iGoogle page. "Parents to sterilise daughter, age 11." Finally, curiosity got the best of me, and I took a look.

Angela, the eleven-year-old child, in Brisbane, is profoundly disabled. Her intellectual age is three-months old. The parents say the reason they want their child to have a hysterectomy is that her periods cause cause pain and fatigue. They also suspect that menstruation triggers epileptic fits.

Certain people in the disability advocacy community are not happy with the parents, and the court that ruled that the parents CAN do this.

Therese Sands from People With Disability Australia says, it is our view that nobody has the right to sterilise a child, not a judge, not a parent, not unless it's a matter of life or death.
Why????

How would this child be helped by NOT being sterilised? Are we denying her the right to have children? How in the world would someone with the mind of a three-month-old take care of a baby?

Angela can't walk. She can't talk. She can't even do sign language. Her parents have to feed her, and change her diaper.

I would be all with the disability advocates if this child was mildly or moderately disabled...maybe even severely disabled. But Angela is PROFOUNDLY disabled. Parenthood is really not in the cards for her.

So is it about the right to menstruate? Are we denying poor Angela her moon time? I hate having my period, and always have. I don't care if it's a natural part of being a woman. To me it's gross, messy, and sometimes painful.

The other issue is this: Is Angela really going to go out and have sex? I don't think someone at that intellectual level is going to be seeking that type of fun. In my depressing opinion, Angela's only chance of sex would be rape and molestation. She's vulnerable, and sick people like to take advantage of people in that situation. Really. She can't say yes or no. So at the very least, her sexual experiences would be statutory rape. I really hope that doesn't happen to her; but if it does, at least she and her parents won't have to deal with a pregnancy.

My heart goes out to Angela.

My heart goes out to her parents. I found it very hard to take care of an infant. I loved Jack from the day I found out I was pregnant. I was one of those lucky moms who was quick to bond. But I often look at eight-year-old Jack, and think I am SO glad you're this age now, and no longer a baby. I can't imagine having a child who I know will never progress past infancy. For me, it would be heartbreaking, hopeless, and depressing.

I think families in this situation deserve our support, not our judgments.

I find reading about all this ironic. Recently, I've really climbed onboard the whole Autism-Pride and pro-neurodiversity camp. I find it offensive that mild forms of Autism (like Aspergers) are considered a disorder/disease. It makes me mad when I hear people say they want to cure autism. Jack somewhat fits the profile for being mildly autistic, and I love him the way he is. I don't think he needs to be cured. In fact, I think the world would be better if more people were like him.

But not all Autistic kids are like Jack. Some kids are severely impaired. They can't talk. They can't manage basic self-care. They're closed off from the world. I really don't think it's right for me to push my neurodiversity mindset on them, or their parents. For these families, I WOULD want a cure.

Sometimes we take the RIGHT ideas, and push them too far to the extreme.

I hate that white Australians stole black children from their parents. It makes me cry. It makes me want to scream. But if you make a law, that says no black child should ever be taken from their parents....that's not good either. Sometimes children DO need to be taken away. It shouldn't be for forced assimilation or to prevent poverty. But if there's true abuse, the child should be rescued.

I hate that the Nazis euthanized disabled people because they weren't perfect enough for Hitler's little dream world. That's disgusting. But if you sit there and say, NO people should be euthanized, no matter how sick, hopeless, and painful their life is; that's just really unfair.

I think there should be laws that prevent people from easily sterilizing others. I think most disabled people (or those folks that differ from the norm) would make fine parents, and they should be able to have the opportunity. But I don't see the point of banning ALL sterilization. I personally think it should be a case-by-case decision.

I'm glad the court decided things the way that they did.

I wish Angela and her family a quick recovery from the surgery, and I hope they're not overly harassed by people who have no idea what they're going through. And no, being disabled yourself, does not mean you can understand. If you're smart enough to read about the situation, have an opinion, and protest....your situation is NOTHING like Angela's.

Still....

Although I may disagree with you, I'm open to hearing opposing opinions. If someone could help me better understand the other side of the argument, I'd appreciate it.

12 comments:

HappyOrganist said...

wow. I haven't watched the news enough to see that story. Wow. I think I agree with you.
And if by some miracle (and I believe in miracles) she was cured or improved enough to be able to raise a child when she is an adult - there is always adoption.
But if the issues are mitigating her pain - and it looks like she'll never be able to have children anyway - why worry about it?
idiots

As far as autism - maybe between the two of us we have the right ideas. It can be fine to look for a cure (and maybe appropriate in some cases) and maybe others don't need it. We know some of 'em don't want it. Maybe that's just fine. (and why wouldn't it be)

Let's both be right, shall we? =D

Hey guess what (on a tangent) - I finally put some over-the-counter lotion on my eczema - and it's actually improved today. I'm surprised - but happy. [I set such high standards for myself - even "normal" lotion can't be the best for my skin.. so I avoided using any. Finally I got desperate - and it helps. haha
I'm such a dork]

Dina said...

HappyOrganist,

I think we're definitely both right.

I was watching X-Men the other day, and it reminded me of the whole Autism issue They found a cure for the whole mutant thing. Some people wanted to be cured...they hated being different. Then other people were very proud of being mutant, and were angry that people wanted to change them.

Even if you go outside disabilities and abnormalities...the issue is there.

Should you wear a bra or "go natural"?

Should you stay gray, or dye your hair?

Wear glasses or get eye surgery? Or just accept that not everyone can see well?

I was thinking how I feel offended when people talk about Autism as a bad thing. But I'm sure I've said things along the line of "Well, he's got ten fingers and toes." Don't we say those types of things when we're pregnant.

That's probably offensive to some people who ARE missing a body part.

I'm glad your eczema is improving! I don't know if I knew you had that problem. Jack had that problem when he was a baby/toddler. He has it much less now. I think one trick is not to overdo it with the showers and baths. Or maybe that's a whole other skin issue.

Oh, and about Angela...I was thinking the exact same thing about adoption.

zhen said...

hey, as usual didn't have time to read all of the extensive post but did read enough-interesting post! yeah and I agree with you too...

p.s Does Jack Have Asperger's? I have a friend with this- I seem to get along easily with Asperger's peeps...I read a short book he showed me about it and the behaviours didn't seem quite that disparate to me...although I was never diagnosed with anything...

HappyOrganist said...

I hate bras, love gray, don't wear glasses (though I should), definitely don't want eye surgery, do have 10 toes - but none of them have eczema on them. =D Guess I can't complain.
But I really don't like bras.

Dina said...

Zhen: That was a short post!!!

I'm not sure if Jack has Aspergers. We had him in early childhood intervention, and they kind of hinted around about that. But my friend (who knows a lot about Autism) says that one of the difference between Autism and Aspergers is that Aspergers kids talk on time. Jack didn't really start talking until age 3, so he'd probably be more autistic.

His main autistic trait (besides the speech delay) is his obsession with things. He gets VERY interested in particular subjects, and he has a really good memory.

He also has intense fears at time...

Things that don't fit with typical autism: He's very imaginative...not one of those "I can only deal with numbers and facts" people. And he's VERY affectionate. He loves cuddles and hugs. I think he's the opposite of the stereotypical autistic in that regards.

What Aspergers traits do you see in yourself?

HappyOrganist: I like the bras, especially the push-up ones. I need to buy me one of those. I never wear bras at home though. I take it off, as soon as I get home. But when I'm out, I don't really notice it.

I like grey...but I prefer not to have it until I'm like 70. I think I was excited for my first grey hair. Now I'm pull them out.

I'd rather wear glasses than have eye surgery. Surgery is not on the top of my list of things I want to do in life.

Glad your toes are free from Eczema.

Michael said...

I saw the headline for that story in The Australian yesterday and read the opening paragraph, but couldn't bring myself to read the rest of it.

It's a confronting and distressing story, but you've nicely summarised the ethical aspects in support of the legal decision.

In this case, the parents and the courts have got it right.

Dina said...

Michael,

Yeah. It took me awhile to get myself to read it. It's just one of those things where you know it's going to be upsetting.

Farila said...

My daughter is healthy girl and she had her periods at the age of 10... it was very frustrating to explain her about it and convince her to do whatever was necessary for her hygiene. She hates it ... I would never consider sterilizing her because I don't want to deny her a chance of motherhood in case she gets capable of bearing and bringing up children in future.
But a child with 3 month old intelligence needs to have any comfort she can get. Good post here from you Dina... let me come back and check out more responses

Dina said...

Farila,

I wouldn't be surprised if your daughter turned out to be a great mother. It might be challenging...as parenting always is. And she might have some unique challenges that surpass the usual. But there's hope.

And yeah. The period thing is hard.

Alex said...

Hey Dina,

I read the article the day it came out and I was so happy that she was allowed to have the surgery. She the discomfort of the surgery wont be nice for her, but at least when that passes she will be comfortable, and that's what counts for this little girl.

I used to volunteer for a community group a few years back when I lived in Victoria, I used to take autistic adults out for the day. :o) We used to have so much fun!

These people were such individuals and so creative! It was a pleasure knowing them. :o)

P.S I agreed with all that you wrote! (As usual lol)

Dina said...

Alex,

Yeah. I'm sure the recovery from the surgery isn't exactly easy. That's definitely a downside. But I'm guessing the lack of menstruation will eventually make up for it.

That's so cool about your community group!

Rebecca said...

I absolutely agree with you and think that this was the right decision.