by matttbastard
Via Daisy: Brand-spankin’ new Feministe contributer Cara highlights a story that FRIDA has followed in detail (h/t cripchick), all about “KEJ”, a disabled Illinois woman whose legal guardian was petitioning to have K…

Your Hebrew quote was very synchronistic - I am working with another group of artists (my part time job) in an exhibition that talks about autism and the way people with autism see the world. Most of the people in the group have children with autism or have autism themselves. The art is magical. I found some information on dreidels (a Jewish toy) which has an inscription on it - ‘A miracle happened here’ and have stamped the acronym symbols over our art by way of signature. I wish that for you, Susan.

I don’t know what beliefs you hold, if any, about what the meaning of our lives are. But if nothing else, I believe that, as the Hebrew Scriptures say, “[Your] children will rise up and call her blessed.” You are one of the great ones.

Please accept my admiration and support. I too have an autistic child (now an adult) who is also mentally ill (bi-polar) and is living on the streets, so I know only a little of what your life is now. If we don’t believe in God, at the least we believe in our children. Your story makes that clear.

It’s for the reasons I outlined in post #458 that it seems rather clear the “Ashley Treatment” should have been named “Convenient Ashley.”

I’m very troubled by her parent’s blog, their own words and their support of heinous views that the parents of any disabled child should denounce.

I’ll remember this blog and the opposing view years from now, when some government bean counter figures out that we can spend a mere fraction of the fiscal budget currently alloted to the severely disabled by chopping them down into more manageable packages. I believe Ashley and her “treatment” will go down in history as the turning point of something very ugly to come. Unfortunately, I think a great many people will need to see that ugliness unfold before they can fathom it, regret it. I’d rather just leave this as a nightmare that never came to be.

The “human rights” issue is very clear. Protecting one’s “human” right requires taking ownership and responsibility for the reason why it became an issue in the first place.

A quote: “The decision to move forward with this treatment, unlike what most have thought, was not difficult.” How in the world can ANYONE support that statement? Even if you believe these people did this wholly for Ashley and for no one else, can you honestly say that removing your daughter’s healthy uterus, her breast tissue and stunting her growth would be anything but difficult? At the least, wouldn’t it keep you up some nights, wondering, thinking, praying that you’re going the best route?

Jane, I’m with you on this one. Of all the things I’ve read, this is what appalls me the most. That it was easy for them to opt for this mutilating surgery, which permanently infantilizes their daughter. Even if, for argument, we assume that it is the right decision, what kind of parent would not agonize over it?

The kind who had already infantilized her. The kind who refers approvingly to a doctor who thinks that a mentally disabled adult is “grotesque.” The kind who will protect the other children by blocking out their faces, who will protect themselves by not disclosing their last name, but who have no problem showing such pictures of Ashley as are on that website. The kind who will refer to a living human child as a “pillow angel.”

Nothing can be done for Ashley at this point. But a lot can be done for other such children by discussions like this one.

(And no, just because you have a seriously disabled child does not give you a free pass, that we should all approve whatever you choose to do about it, or about the child involved.)

You’re so right. You could have made easier choices with Jake had you considered your own convenience - yet, you didn’t. And you’ve said it brilliantly, are children “are on loan, from God, to be returned at a later date. You can love, and cherish another human being, but you cannot own them.”

I am truly amazed that so many people believe parenting is equal to ownership, giving them free reign to do whatever they deem best for their property - whether it means removing healthy organs or limbs.

I won’t pretend to be too surprised when a teenager with the IQ of a small child is given a hysterectomy for the same reasons as Ashley. But I will always be shocked when the request comes from the very parents of these human beings - those who should protect their human rights the most.

I agree with everything you have said about lack of support for people with a disability and for their carers. It is an awful situation and it sucks.

You are missing the point that we are trying to make about human rights, and Ashley’s entitlement to them.

My little boy, Jake, is autistic. Physically, he is fine. He is a lovely looking little nine year old boy who is one of the great joys of our life.

Jake goes to a mainstream school where we live in country Western Australia. Rural education options are, to say the least, somewhat interesting. It has been pointed out to us on many occasions that Jake could be homeschooled, or should be ‘put into a special school’. However, nobody is really willing to challenge us by throwing him out in the current climate of inclusion. Jake gains a great deal from mainstream schooling - it is beneficial for him to model social behaviour from his peers, and he would lose that if he was homeschooled. His social behaviour skills have increased enormously in the last three years.

But Jake is very, very difficult to manage. He suffers extreme anxiety in most situations, and especially in situations with other people around. Jake likes to do things like provoke sensory stimulation (stimming) which involves him doing interesting things like flapping his hands, spinning around repeatedly, touching shiny or reflective surfaces (corrugated iron is a nightmare as he feels that he has to touch each rib). He has to walk along a kerb and gets very distressed if he cannot. Travel makes him very uncomfortable and so do large groups of people. Taking Jake to a shopping centre is very challenging (and you can imagine the looks you get with a spinning, flapping, whirling dervish who touches shiny objects and says repetitive words in a monotonal, robot-like voice).

Jake really enjoys going to rural shows, as the spinning rides seem to calm him down. He says he loves them and always clamours to go.

You know what? I don’t want to take him to the Royal Show. It is a nightmare. I hate people looking at me with that look that says ‘Just smack him.’ I hate trying to pull him away from whatever stim he is using, and trying to keep him under control. It is embarrassing when he stands still and will not move, or shrieks in his ‘robot’ voice. It is bloody hard work and I am sick of it.

I don’t want him to go to school. It would be easier for him to stay at home where he is reasonally ‘well behaved’, to give up work and go on a carer’s pension. I hate the struggle with the school bus in the mornings, and the first three weeks of school (Jake hates change) is hell. Today is the first day of school and Jake has been up all night, wide eyed and pacing, stacking things in his room and muttering under his breath. I went to sleep for forty minutes at one point on the couch - I feel cactus this morning. I would probably do a terrible job at teaching him but it would be so much easier.

Like all parents of kids with a disability, I sometimes look at him and say ‘why me?’

But here it is - Jake has a right to attend school. He has the right to be treated equally as my other children are (I have six, he is the last child). I would not dream of denying the others the outing to the show, the opportunity to an education, or anything else they would be entitled to. I suppose I feel for his rights strongly as I have a disability (muscular dystrophy) myself, and I know what it is like to be discriminated against.

Xuxan said, ‘I can stick my son in a cocoon and let him live a perfect sheltered life that I fabricate for him or I can allow him to experience as much life as he possibly can - the good and the bad.’ She has it exactly right.

Ashley is not a possession. None of our children are. They are on loan, from God, to be returned at a later date. You can love, and cherish another human being, but you cannot own them.

This whole issue is completely wrong. And the worst thing is - if I invented the ‘Jake Treatment’ - where I locked my adored son into our house with all basic commodities necessary for a human but gave him no social contact - if we refused to speak to him on the grounds it would exacerbate his ‘condition’ - if we took him nowhere, homeschooled him, and took away the things he is entitled to as a human - there would be other, well meaning parents of children with autism who would say ‘I can see why she did it.’

What is important (not so much for Ashley now, as it cannot be undone) but for other children with disability is setting of a precedent - making this all okay. Medical professionals giving the okay to perform convenience surgery and setting a precedent for any parent to ‘adapt’ their child to make it easier to care for them. We do not own these children - neither the parents, the medical profession or the community own them - but we do own the right to fight for their rights. That isnt because you own the child; it is because in a democratic society, you have the right to take part ownership of the law. The issues you are speaking of (getting your child equitable access, etc) are the same issues - they are human rights.

Lives of parents of children with a disability generally suck. Of my two kids with disability, I consider Jake’s the greater disability, and harder for me. It is hard when you are never acknowledged with a hug or a smile or a warm word, because that person does not understand emotion. It is harder to watch his distress when things go wrong and he does not understand why they go wrong.

But do you know what? I took Jake to the Royal Show with his siblings, and it was a nightmare, as predicted. He did all the things above, and was so exhausted that he fell asleep on the floor of the train on the way home. But it was completely and utterly worth it for the split second that I glimpsed a very small and secret smile of delight when he was on the rollercoaster. When things are rare, you value them more.

Today, I am completely buggered, and I know we have three weeks ahead of an unsympathetic teacher, sleepless nights, constant stimming and obsessive behaviour and a child who will not eat or sleep because of his anxiety. But I will not give up fighting for his rights, not for one single second, nor for the rights of any other child with a disability.

Irony according to Ed Byrne is like being a town planner on her way to a seminar of town planners at which she is giving a talk on how she solved the problem of traffic congestion in her area and can’t get to the meeting because she’ stuck in traffic jam.

I could have been convinced of their benevolent reasons, though I would never have supported this radical and inhumane act. But reading their blog makes it extremely clear who this was for and Ashley, sadly, doesn’t seem to have been a consideration.

1) A quote: “The decision to move forward with this treatment, unlike what most have thought, was not difficult.” How in the world can ANYONE support that statement? Even if you believe these people did this wholly for Ashley and for no one else, can you honestly say that removing your daughter’s healthy uterus, her breast tissue and stunting her growth would be anything but difficult? At the least, wouldn’t it keep you up some nights, wondering, thinking, praying that you’re going the best route? Would you be that arrogant with your child’s body that these procedures wouldn’t even have been difficult?

2) Ashley’s image. I find it par for the course that they shielded the pictures of themselves and their other children for the sake of privacy but found it perfectly acceptable to parade Ashley’s picture to the world. Again, demonstrably, Ashley is a lesser human being - not worthy of the privacy or dignity afforded to the other children. It was perfectly fine to exploit her image in various poses. Again, this goes to the depersonalization of Ashley.

3) This quote from ethicist, George Dvorsky was included in the parent’s blog: “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.” Even if you’re the parent of a disabled child who can understand the Ashley Treatment, wouldn’t you have even the slightest disgust for the way in which a so-called “ethicist” has described your mentally disabled child and mentally disabled adults? He has said - quite clearly - that having a full-grown, fertile woman with the mind of a baby is grotesque. Frankly, what’s grotesque here is that an ethicist would have this mindset and, worse, that Ashley’s parents would support those views.

Even if you can understand and sympathize with the practical reasons for this treatment, can you understand why their claims of doing this for Ashley raise some pretty big red flags to others?

We wouldn’t be having this discussin if schools and public place went beyond ADA compliance by making buildings, sidewalks, parks accessible for all without ever having to rely on other people to carry our kids or their wheelchairs. It took us 45 minutes to get into a science center by way of their “handicapped” route.”

-So the answer is to alter the bodies of the handicapped? I just don’t even imagine where you draw the line. Her arms? Legs? What more? When do you stop? When does incompatibility with the facilities at the local science center warrant removing healthy body parts from HUMAN BEINGS?

“even if they intended the Ashley treatment purely for their own benefit, I don’t believe what they did was wrong. I don’t believe in slippery slopes. What I am toying with is the idea that even if the treatment provides no benefit and only harm to Ashley, the benefit that it gives her overworked and loving parents outweighs and justifies the minimal discomfort it causes their child.

-Well then Eva, that’s where we’ll have to agree to disagree. So long as Ashley is a human being, protected by our constitution as her own person, I will never agree the benefit to a parent should be weighed over removing healthy organs from the child.

“I haven’t heard a lot from Jane on why she thinks that the Ashley treatment does not improve Ashley’s quality of life in the long run.”

-It’s impossible for me to furnish evidence for a negative. It is up to you, the one who asserts, to do so. I say that removing perfectly healthy organs from a human being provides no benefit, other than to alleviate burden to her family. If you can prove otherwise, please do so. By the way, proving otherwise does not mean you get to hypothesize about Ashley developing breast or uterine cancer or that she’ll have unbearable menstrual cramps. That kind of fortune telling should have no place here.

Providing evidence for the health benefits of removing Ashley’s uterus and breast tissue is to illustrate how exactly Ashley was better off 1 month after the surgery vs. 1 month prior.

This is part of respecting who he is.

Thankfully my son can give me some input into his preferences, whereas Ashley seemingly cannot. (I am not going to say cannot, because I have seen people who others believe are not communicating communicate.) People think I am a very odd mom when I am sad about something he is doing and I had the power to prevent it. I can stick my son in a cocoon and let him live a perfect sheltered life that I fabricate for him or I can allow him to experience as much life as he possibly can - the good and the bad.