Then again, there are parents of severely disabled children speaking against it as well. http://www.pkblogs.com/dreammom/2007/01/pillow-talk-debate-over-ashley.html

And when it’s justified on the grounds that as a secondary benefit, reduced breasts won’t ’sexualize’ her towards her caregiver, or how it’s ‘grotesque’ to be full-grown and fertile with the mind of a baby, think it defeats their purpose. Think it might give the impression that they’re more concerned with other people’s attitudes and reactions than what’s best for Ashley.

Cory Silverberg writing on About.com makes such valid points:

http://sexuality.about.com/b/a/257889.htm

Ashley’s parents claim that they wanted to prevent her from developing breasts because breasts might increase the likelihood of her being sexualized and sexually assaulted.

Infants are sexually abused, and children of all ages are sexually abused, and sexualized in the making of child pornography. The idea that her having breasts make her a greater target is ludicrous. Ashley’s parents offer up their real motivation for this themselves when they wrote that the real grotesqueness in the situation is “the prospect of having a full-grown and fertile woman endowed with the mind of a baby.” Reading that sentence out loud makes me physically ill..

.. In the BBC article, one of the doctors on the committee is quoted as saying that the committee agreed “because the parents convinced us it was in fact in this little girl’s best interests”. That ethics committee was not there to protect the parents; they were there to protect the patient. They failed completely in this task and should simply be ashamed of their complicity in this decision.

I do a lot of work around sexuality and disability, including working with people who have developmental disabilities (the kind of people who are often referred to as having the mind of a six year old). I can tell you that consent is never a black and white issue. I can also tell you that cognitive ability is never black and white. Saying that Ashley has the mind of a three month old is, at best, quoting someone’s educated guess. Ashley’s disease is rare, and no doctor or parent can with 100% certainty predict the course of the disease, or what her entire life living with a disability will be like. It also needs to be said that cognitive ability is not the same thing as lived experience. Someone may not be able to read, but it doesn’t mean they can’t feel, communicate, experience pleasure as well as pain, and live. These are all possibilities. But many of these possibilities have been ripped away from Ashley, and regardless of how well meaning her parents no doubt are, we should never pretend that their actions are acceptable.

“Because it’s easier to carry her around” is not a compelling reason to permanently stunt someone’s growth.

“Because I couldn’t stand the thought of her being pregnant” is not a reason to permanently make someone sterile.

And you wonder, was this really the only option they had? http://www.dredf.org/news/ashley.shtml

Modify the System, Not the Person

“Benevolence” and “good intentions” have often had disastrous consequences for the disability community. Throughout history, “for their own good” has motivated and justified discrimination against us. The recent story about nine-year old Ashley, a child with severe disabilities, exemplifies this problem. When she was six, Ashley’s parents requested that their daughter be treated with medications (large doses of estrogen) to halt her physical growth, and with surgeries to remove her breasts and uterus ..

.. Where, we wonder, was the network of programs and services that exist in every state when Ashley’s family decided the best option was to employ medical procedures that violated their daughter’s autonomy and personhood? Were other families whose children have disabilities like Ashley’s asked to talk about their experiences and how they solved problems as their children grew to adulthood? Where were the social workers and advocates who should be providing alternative perspectives? Why did the system fail this family and their daughter? That, it seems to us, is a fundamental question.

Here is what David had to say. David has cerebral palsy.

http://growingupwithadisability.blogspot.com/

I feel weariness and sadness that we live in a society where a parent feels that medically and surgically altering a 6 year-old’s body to deal with growth is their only choice; a society where medical and ethical professionals actively encourage this desperate measure, rather than actively and creatively encouraging modification of our social systems to provide practical, economic, health, emotional and respite support of their clients (both child and parent); a society where many are angry with those who bring such injustice to light. ..

.. For those of you with no personal experience living with or caring for a person with physical disability, there are ways of doing many of the things that are difficult. For example, I, weighing about 140 pounds, have a lift that my parents use to lift me off of the floor. I also have a wheelchair that reclines and lets me change position to minimize the wear and tear of staying in one position for an extended period of time. When I was younger, I had respite workers. These were people that were paid by our community support services, chosen by my parents, who took me out for fun, while giving my parents a break. I enjoyed spending time with them, we developed a good relationship.

This is what a member of the Board of Directors for the Institute for Ethics and Emerging Technologies had to say in defense of the Ashley Treatment, quoted by Ashley’s parents:

http://ieet.org/index.php/IEET/more/809/
“A colleague of mine noted that there are some potential abuse issues that need to be addressed. For example, is the resource-crunched medical establishment more inclined to have parents take the burden of care? Is this a way of passing the buck? Is the hysterectomy really necessary?

These are valid concerns, but I think they can all be addressed.

First, I believe the wishes of the parents are what is driving this decision and not the demands of the medical institution. In this case, it appears to me that the needs and desires of the parents are being met.

As for the hysterectomy, I have to question the value of keeping this girl fertile. 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.”

Doctors could not determine a diagnosis or a cause, so they gave her condition that big fancy sounding name that the medical profession uses, to make it seem like they know more about it than they actually do – “static encephalopathy of unknown etiology”, a condition they don’t expect to improve, but don’t expect to worsen either. Ashley is but 9 years old, 6 years old when the decision was made. Things do happen. People do grow, develop and change.

And who’s to say she only has the mind of a baby? Are they in her head and heart? Are they mind-readers too? To be more accurate, she perhaps looks like she only has the mind of a baby. But people are notoriously quick to assume and judge from what is really a position of ignorance. Even the neurologists.

Just ask the mega savant Kim Peek and his father. Or ask Temple Grandin, and I’m certain countless others, whose parents were told that their children should just be institutionalized and forgotten about. That they would never improve and had no potential.

Since when has medicine, even neurology, had the expertise to predict anyone’s potential. They’re not even experts in their own field – disease. Or do you know of any physician who’s come up with a cure for cancer yet? MS? The common cold? Should I go on?

This is the part that scares me, the ‘medicine/science is God’ attitude. The pronouncement of a doctor limiting anyone’s potential from a position of arrogance and otherness. Deciding that anyone – lacks the cognitive capacity to experience any sense of indignity. That attitude not only scares me, it brings me to tears.

Not all physicians and bioethicists share that attitude. A neurologist who examined Kim Peek had this to say -

http://www.sciam.com/article.cfm

“Kim Peek – the inspiration for Rain Man- possesses one of the most extraordinary memories ever recorded. Until we can explain his abilities, we cannot pretend to understand human cognition.” – Darold A. Treffert and Daniel D. Christensen

I appreciate their humility so much. Wish more doctors, neurologists and bioethicists would learn to humbly say .. It appears … We don’t know … Seems like, but … and finally … We’re not God. Because they’re not and they have NO RIGHT to act as if they are!!

Found such interesting comments on the following blog about limiting potential and low expectations. You might be surprised to learn about the prognosis given to most children with cerebral palsy in the past.

http://thegimpparade.blogspot.com/2007/01/i-am-tired.html

MrSoul said…

Mental age, my ass. When I hear the words “mental age”–I reach for my revolver.

If my mother (R.I.P.) hadn’t had such a huge show-biz ego, and hadn’t simply dismissed the prognosis given to most children with CP 50 years ago, I’d be as ignorant as anyone else warehoused for a lifetime. As it was, no kid of hers was going to be “retarded”–and that was that. Not an option. As a result, I wasn’t.

I wonder how often it works the other way, with parents simply accepting the conventional wisdom dispensed by the MDs? (Medical Deities)

Blue / Kay Olson said…
Mr. Soul, I recall David Pfeiffer, who ran one of the academic disability studies organizations (SDS) until his death, saying something once about how IQs of the average “mentally retarded” people went up significantly when fewer were being institutionalized. Really not a coincidence, I think.

Blue / Kay Olson said…
Some other commenters haven’t been thrilled by what this may say about actually “retarded” folks.

Noted.

But part of the stigma of developmental disabilities is also the low expectations, isn’t it? Terminology aside, I wonder what the world would look like if those diagnosed as intellectually inferior were not limited by what people believe they can’t do. There are a lot of people out there who were told they didn’t have the brains to enter a spelling bee or whatever. I think this does more to show we are all of one group, than divided between those who can and can’t.

It’s funny how pedophiles do that, downplay what they did and its effects. Oh, it’s nothing, they say. You’re making too much of it. Just get over it. That’s what I used to hear too, not when I confronted family members who had abused me, because they’ve all since passed on, and I never did manage to confront them about it while they were alive.

When I bring it up with other people in my family now, it’s – But he was so nice to me. He always gave me money and gifts. I tell them he was so nice to me too, but I don’t tell them the word for it is grooming, and they should just be grateful that it didn’t go any furthur.

I never confronted the men who’d abused me, but I did confront someone in my family about what my best friend reported he’d done to her. Ah – it’s nothing, he said. She’s making it sound bigger than it actually was.

It’s a bit like someone kills your favourite pet, let’s say a puppy, cold-blooded, then tells you that it’s nothing. Your puppy would have died anyway You should just get over it. Don’t make it into such a big story. The policemen say, yes, he killed your puppy, but was there actually any blood. Did he use a gun or knife. If there wasn’t any blood, we don’t want to hear about it.

But the point is he took away the life of my puppy. Doesn’t that count for anything? Apparently not. So you go into derealization mode – for awhile. Or you get Kabbalah religious, not the true Kabbalah (a beautiful religion), but the new-age version, because the idea of parallel worlds starts to make sense, and you wonder if you just happened to wake up into some parallel darker version of the world you used to live in. A world where exploiting you sexually when you’re innocent, or killing your puppy without remorse or consequence, is ok.

A few people understand and care.

http://www.encyclopedia.com/doc/1G1-82106617.html

Lay Catholics should demand more openness from the institutional Church. Dioceses should open their books to laymen as a matter of accountability and oversight. Doyle, who as counselor to many victims is privy to settlement details, says the people in the pews “would be absolutely shocked to discover how much of their money was being paid out on these settlements.”

Similarly, given how poorly the institutional Church has policed itself, there should be lay boards to review diocesan personnel files to make sure sex abusers aren’t being concealed. “I don’t want to hear about another new policy until someone says to me that someone other than the fox guarding the henhouse has examined the files,” says lawyer Steve Rubino, a leading victims’ attorney.

Restoring the Church’s credibility also depends on the bishops’ being less lawyerly and more Christian. Johnnie Cochrane didn’t come to save the world, Jesus Christ did. This means seeing those who have been raped or molested by priests as suffering souls in need of pastoral care, not moneygrubbing plaintiffs who deserve the brass-knuckles routine.

One parish priest says he will never forget the day he realized his former boss, an East Coast bishop (now retired), was a true man of God. “We had to meet with a family whose child had been abused by one of our priests. When we sat down face to face with them and the lawyers, we told them that the bishop had said his first priority was to do the right thing. We told them our investigation had found that the priest was guilty, but that he had never been in this kind of situation before. We had removed him from any further parish involvement. We told them that we didn’t believe we had been neglectful, but we wanted to help the family in any way we could, because we recognized lives had been damaged, and we were profoundly sorry. And that was the bishop’s position.

“I looked across the table, and the family was crying,” the priest recalled. “The father said, ‘Thank you. We never wanted to persecute anybody. That was all we wanted to hear.’”

She looked at me
And the emptiness in her eyes was cruel to see
Then she turned away and said,
Once I loved, but love is dead
And I whispered, sometimes love is only sleeping

She said, I cannot cry
And I cannot give or feel or even try
And her voice was hard and cold
Then her sweet young face looked old
And I whispered, sometimes love is only sleeping

Through the endless days and nights
Could not help but wrap herself in sorrow (sorrow)
Through the endless days and nights
She waited for a shiny new tomorrow
Love was sleeping, sleeping

She looked at me
And her smiling tears were warm and sweet and free
And the moonlight kissed her eyes
As it mingled with our sighs
And she whispered, sometimes love is only sleeping
And she whispered, sometimes love is only sleeping
Only sleeping…

The Monkees – “Love is only Sleeping” – lyrics

Oh my, do the songs ever bring back memories of my youth. Think I first heard the songs on the hit show ‘The Monkeys’ – 1968 or so. That would have made me about my daughter’s age at the time. She heard a musak version of ‘Last Train to Clarksville’ at Walmart today and asked if it was an old song and if I knew it, cause she liked it.

God yes! Also begged my parents to buy one of their albums at the time, and I spent many an evening painting, playing with my barbies, dancing like a dervish, and indulging some pre-adolescent fantasies while listening to the songs. Wonder, was the spinning detox. There was quite a bit going on in my life at the time that was toxic, and I think spinning relieved some of the pressure, the anxiety and frustration. It also made me quite high.

Just found some Monkee songs on iTunes – Daily Nightly, Star Collector, The Door into Summer, Pleasant Valley Sunday, and Love is only Sleeping. I used to be able to walk and run back then. It was nothing for me to step outside and run in the yard. To skip rope if I wanted to. To dance like a dervish. How I miss that!

Crow of all things made a reappearance. Who’s Crow you ask? He’s just a black bird who spreads his wings to eclipse any light coming to me, cause he likes the way the light glints off his black feathers. The vain, conceited fowl!

Crow tells me I don’t deserve to walk. Haven’t walked well for 7 years now, so it’s just not meant to be, and I best give up trying.

Have you seen the episode on Angel, where Cordelia is being told by an evil ghost that she doesn’t deserve to live and should tie a noose around her neck and hang herself? The ghost plays on her insecurities, and Cordelia almost does hang herself.  

Have you ever heard of Winston Churchill’s Black Dog? http://www.mhsource.com/exclusive/chanceth0196.html

I can relate.

So I say, ‘Crow!, heh, it’s you again. You’ve probably been there for some time, but it’s only now I’m noticing you.’ I only notice him when he gets really bad. The last time was when I had a bout with anorexia, some 20 years ago.

About that bout, at first Crow was telling me that men hated women and their curves. So better lose those curves. Learned to drink lots of water, to substitute for breakfast and lunches. Ate hardly anything for supper. And thrilled to seeing my weight drop on the scale. But when I got down to 108 pounds, which I felt pretty good about, Crow was telling me that I didn’t deserve to eat. Other people might, but not me. Wasn’t I still being despised? 108 lbs wasn’t good enough.

So I got down to 103, which is quite an accomplishment for someone who stands 5′6″, and would have gone furthur, because Crow was becoming very insistent then. The thinner and hungrier I got, the more insistent. Deprivation. It was something I was all too familiar with. And Crow was telling me that I had been deprived all along because I wasn’t worthy, I was never worthy. Other people were, but not me. I didn’t deserve to eat.   

Anorexia is most certainly not just a body-image problem. At least, not when it becomes serious. Or at least it wasn’t for me. It was a battle with internal demons.

What snapped me out of it? Stopped menstruating, and found out if it continued for too long, I might not ever be able to conceive. And Crow left me for a time. 

Found the following on how anorexia starts, and Wolf and the person commenting have it pretty well nailed, for those of us not in modelling or some other profession where being waif-like thin is expected. It did start out for me as a rebellion as well, but one which backfired. Don’t think I would be true to my experience if I didn’t add that I’d been sexually abused from a very young age – starting at age 3. Don’t think it’s possible to go through an experience like that without acquiring some demons.

http://ana.makeupyourmind.nu/

As Wolf explains in The Beauty Myth, the disease often starts as an attempt to take control over the ideology with which society is trying to control them- and what better way to do it than by rejecting food with its ties to femininity? Many women enter anorexia by vowing to wrest control of their own bodies- by any means necessary- away from the outside forces of their parents, the media, and society at large. They accept the challenge presented to them by the waif-like models and actresses and one-up them by becoming so thin they are no longer sexually attractive. This does, in a sense, free them from the demands that they be beautiful and that they be responsible for the care and nurturing of others because they have made themselves much too frail for either.