5.20.2007

ashley was not treated, she was abused

Once in a while, something fills me with such revulsion and horror that I can hardly read about it, and can't respond in writing at all. I mentally peek through my fingers, coming at it from an angle, absorbing little bits of information until I can summon the intestinal fortitude to look at it straight on. The so-called "Ashley Treatment" was one of these events.

"Ashley X," as she is known, has a congenital disability called static encephalopathy. She cannot walk or talk; she cannot sit up or raise her head. She must be tube-fed, and although alert, she is, and always will be, developmentally an infant.

Ashley's parents, who call her their "pillow angel," wondered what would happen to their daughter when she was too large for them to carry, or when they were too old to care for her themselves.

They decided to keep Ashley forever young. Beginning when Ashley was six, her parents administered hormones to stunt her growth and prevent the onset of puberty. When she was 12, at Ashley's parents' request, doctors removed Ashley's uterus and breast buds.

Ashley's parents did not only chose this route for their own daughter. They promoted it to other parents of similarly disabled children, calling it the "Ashley Treatment". They discussed the reasons for their decision, and the reaction to it, on this blog.

When this news reached the public at the beginning of this year, the disability community reacted with nearly universal horror and condemnation.

As time went on, and discussion and debate continued, some people in the disability community spoke up to defend Ashley's parents' decision. Seen in context, they said, it made sense.

Interviewing parents, my editors at Kids On Wheels discovered a lot of gray area. One woman said, "It's easy for us to sit here and judge, but until you've seen your child suffer.... There are not enough services, not enough money, not enough equipment, not enough resources." This person felt that ruling out "the Ashley Treatment" could lead parents to infanticide, or euthanasia, or murder - different terms for the same act.

An essay by Kids On Wheels parent and writer Lorna Catford explores the issues. Catford, who says she would never take such actions with her own daughter, writes "I know first hand the dilemma they are confronting. The worry we have about the care for our children in the future is intense, real, and as far as I have seen, pretty incomprehensible to most parents of 'normal' kids, or even kids with less severe disabilities."

I am well-versed enough in these issues to understand this gray area, at least on an intellectual level. (I would never claim to know what parents of severely disabled children go through.) There is, without question, an unconscionable lack of services and assistance. I don't know how people cope. Many do not.

Despite this, I feel we must draw a bright line between what is acceptable and what is not.

Easy for me to say. But still, I say it.

There is a long, terrible history of involuntary sterilization of people with developmental disabilities, defended in no less an august institution as the United States Supreme Court, where Oliver Wendell Holmes, Jr. famously wrote that, "three generations of imbeciles are enough."

In the US, involuntary sterilization has been used a method of controlling and punishing African-Americans, sex workers, low-income women and people with disabilities. Worldwide, it has been used against Romani people (Gypsies), indigenous people on every continent, sex workers, political dissidents, and of course, people with disabilities. (That's probably not an exhaustive list of victims.) Organizations such as Human Rights Watch and the U.N. High Commission for Human Rights recognize involuntary sterilization as a human rights abuse.

People with disabilities are people. They are not objects to be manipulated for the convenience of others.

Children are humans. Their powerless condition is painfully underscored every time an adult abuses or neglects them. Ashley's parents had no more right to medically manipulate her in this way than they would to sexually abuse her.

* * * *

What led me to finally blog about the Ashley Abuse was the news, last week, that an investigation by a protection and advocacy agency determined the surgery was illegal.

Seattle Children's Hospital, where doctors performed the surgery, has admitted that they violated the child's rights: no one independently represented the child's interests and advocated on her behalf, and the surgery was not court approved. Indeed, there are laws against this already. Parents can't just do whatever they want to their children and claim its in their best interests.

Although the hospital's medical director apologized - "We deeply regret that a court order was not obtained and that an independent third party was not sought to represent Ashley. We take full responsibility." - he also said he believes the treatment Ashley received was right for her situation. He also added that the hospital is considering similar requests from two other families. (From Helen Henderson's excellent "Direct Access" column in the Toronto Star.)

There's no shortage of opinions out there on this issue; Google "ashley treatment" for a sample. I recommend F.R.I.D.A.: Feminist Response In Disability Activism, a group of women with disabilities who have been speaking out about this issue from day one.

2 comments:

Anne alias Purrceyz said...

Laura,

I've thought long and hard about this one too...as I have a son with severe disabilities.

Although my son doesn't have a physical disability (he has severe autism, a severe intellectual disability, epilepsy, bipolar disorder, an extra chromosome, and remains nonverbal at age 17); I've known a number of families with children similar to Ashley.

Surely there are better answers to helping the family cope with their daughter's increasing size and weight (lifts etc.) than altering her body without her permission. As well, I thought that the parents were extremely naive thinking removing her breasts would protect her against sexual molestation..

Although I'm sure that they love their daughter dearly, it seems that their decision was done for their benefit, not their daughter's. Although puberty can be not easy to cope with when someone has a severe intellectual disability, they cannot remain a child physically and must transition to an adult body. ( know all about this at 17, my son's hormones are raging...due to his difficulty understanding social skills, he is being taught you can't grope workers or your mom and his bedroom is an appropriate, private place for certain activities...not the breakfast table.)

It's tough but when I make decisions for my son (ie. medication), I try to make it for *his* benefit (will it help him function better? less anxious? less easily frustrated?) than make it easier for those who teach/live/work with him. (I feel it is wrong to use medication for this purpose and it leads to overdosing.) As well, I've always tried to make people who work with him use strategies that give him choice and teach him have to manage himself as much as possible. (So often people see behaviour in nonverbal people as something to be 'fixed', they don't see it as a communication and as a guide to teaching coping skills.)

Even though sometimes I may disagree with some disability advocates sometimes or feel that what they advocate may not be necessary (ie. a patient' right advocate reading my son his rights when he was in a psych ward..his daily functioning is about age 4 & his intellectual ability is about age 6..), the alternative is worse. Despite my son's level of disability, he is a person and deserves the respect that is due to all humans.

We must never forget that nonverbal people are *people*.

Anyway, this may be offtopic to you, but I think it's something many parents of children with severe disabilities who are nonverbal struggle with..always checking that we are putting the child's needs and wants first and not superimposing ours upon them.

L-girl said...

Anne, thank you for your excellent, thoughtful comment. It's anything but off-topic. I appreciate (and agree with) your point of view so much.

As well, I thought that the parents were extremely naive thinking removing her breasts would protect her against sexual molestation.

Oh yes. I found this very naive, and very sad.

his bedroom is an appropriate, private place for certain activities...not the breakfast table.

Heh. :)

The medication issue must be very difficult. I imagine it would be much easier, in some sense, just to dose him up. I really respect your insistence on examining the ethics of the options, and trying to always do what's best for him.

* * * *

We are always looking for ways to include nonverbal kids and their parents in Kids On Wheels. I've done interviews through parents using sentence choices ("When I went in the water, I felt - [child will indicate choices as parent reads] - scared / proud / happy / ... "). I was so aware of how limited that was - how little I would learn about the person if she or he couldn't speak to me (plus we didn't meet in person so I didn't have facial expressions or hand gestures cues).

Thanks again for your great comment, Anne.