I'm sure none of us has missed the story of "Ashley", the nine-year-old from Washington state whose parents subjected her to major surgery, removing her reproductive system and breast buds and giving her hormone treatment to stop her growing, so that she will remain child-sized, thus easier to carry around, and stopping her becoming woman-like so that she will not be an easy mark for abusers later in life. Angela Phillips (author of Our Bodies, Ourselves) wrote last Thursday generally in favour of the treatment, castigating a disabled blogger ([1], [2], [3]) who objected to the treatment as "medical experimentation" and the "brutal mutilation of a disabled person", accusing her of identifying with Ashley and seeing her as the child she herself once was, without realising how disabled Ashley is - without any of the prospects physically disabled people enjoy nowadays. Meanwhile, Yvonne Roberts objects to the treatment and to the intrusion they allow into their daughters' privacy, showing her picture while keeping the identities of their other children (and for that matter themselves) hidden. She also notes the misogynistic tone of Ashley's father's blog, observing that he "constantly associates much of what it is to be a woman with discomfort, problems and concerns" and wondering whether he would sanction the castration of a nine-year-old boy for fear that he might become sexually aggressive later in life.
I personally understand why a girl this disabled might be put through this treatment, but the medical profession being as it is, it is unlikely that it would be confined to children this disabled. There was, for example, a documented case of a girl in Australia being given a hysterectomy when she was 14, because she had cerebral palsy (with no intellectual impairments; she can talk and is interviewed here). I have no idea what this lady's parents were thinking of, but it's a fact that people can persuade themselves that something is for their children's own good when it is in fact convenient for themselves. I would suggest that treatments like this be court-regulated and that the consent of an intellectually unimpaired minor in such situations be paramount.
Asalamu alaykum,
I've been pondering over this issue since I first head about it. My first reaction as a person that works in the developmental disabilty field is disappointment mixed with compassion.
Caring for individuals with a range of special needs and especially those that need maximum care is not easy and to have the family as involved as they are is usually a good thing but I also know that in my agency on average the individuals that lived at home the longest until their parents were no longer able to care for them tend to be the ones with the least personal and social skills not because of their disability but due to the inabilty of the parents to let them grow.
It all boils down to consent, and profoundly disabled people are not able to willingly consent to being mutilated, much less killed. Guardians, frankly, cannot be trusted to make those decisions on their behalf.
I can't believe, after what happened during World War II, that we are even thinking such procedures are acceptable.
Not just because of "the inabilty of the parents to let them grow", actually. With severely disabled people it is often much quicker and easier to do things for them than to teach them to do them for themselves. "Ashley" seems to be at the most serious end and possibly to be almost- or even completely- unteachable, but the fact remains that if she continues to look like a child she will probably elicit more favourable responses and attention from others in the rest of her life than she would if she matures physically.
How far do you carry the consent argument with
severely disabled people? Some are not willing to be fed or are very difficult to feed- are we to take this as a sign that they do not consent to be fed or are we to feed them regardless?
Indeed, I agree that it is often easier and faster to do things for the individual with a developmental or physical disabilty but parents out of their love, feelings of guilt, fear, etc. tend to do more than is necessary for their children and in a counterproductive way stunt the development of their children even more.
We've had countless cases of individuals that came into our agency after living at home for an extended period of time and were thought incapable of this or that and within a few months or years were able to do things for themselves that no one (or should I say their parents) thought possible.
Almost without exception those with severe developmental disabilities have a higher quality of life and acquire more independant living skills the earlier that they interact with community supports away from the 24/7 care of their family.
Assalaamu alaikum,
I just happened to see this at the BBC website while looking at something else, and it reminded me of this controversy.
From http://news.bbc.co.uk/2/hi/africa/5107360.stm
Cameroon girls battle 'breast ironing'
A nationwide campaign is under way in Cameroon to discourage the widespread practice of "breast ironing".
This involves pounding and massaging the developing breasts of young girls with hot objects to try to make them disappear.
Statistics show that 26% of Cameroonian girls at puberty undergo it, as many mothers believe it protects their daughters from the sexual advances of boys and men who think children are ripe for sex once their breasts begin to grow...
My question is for any parent who is reading this....do YOU have a disabled child with the brain functioning of an infant? Why is it that everyone has an opinion on an issue where they have no personal experience...you do not know what you would do unless you are placed in the same situation. And even if in this one specific case, Ashley's treatment is justified, her parents don't need to catch the heat from it. They aren't the ones who will be making the medical decisions for other children like Ashley, the doctors will.
I am a single mother of three children. My oldest, my son, is severely handicapped. Born healthy, he contracted meningitis at 9wks old. It is a miracle he has lived to be 12 years old. I describe him as being a 12yr old boy, trapped in a 2 month old's body; a very LARGE 2 month old's body. He now weighs 80lbs. That's like picking up a 52” 80lb sack of sand. I'll be the first to say, if at the age of 6, I could have done something to keep him smaller, I would.
From the day he got sick, I knew things would change. The doctors told me we wouldn’t take him home. He is my angel on loan. His sisters, now 9 and 10yrs old, a home health nurse who’s worked for us for 10 years, and myself care for him daily. Every morning, his sisters and I prepare his morning medications, take him off his feeding pump (he can not swallow,) change his diaper, get him dressed, and sit him up for the morning. We do this every day, not as a chore, but because that is our routine. Through out the day, there are feedings, diaper changes, changing positions, and medications to give. All of which is a part of family time. From the day I brought my new son home from the hospital, I knew this would be his daily routine.
His life has dramatically changed over the past 3 years. I haven't been able to give him a bath by myself in almost 2 years. Because of his size, it takes two people to lift him. Having a lift would be some help, but unfortunately my home is too small for a lift. For the past few months, his hips have started aching. They fell out of socket years ago because he doesn't use his legs. His weight has added to the pain of his hip joints. Oh, just to hold him, curled up in my arms again like I use to do would be heaven! I can hold him still, but it is an awkward and difficult task, that usually ends up with one of us in pain. I know one day, he will have to leave home, and be placed in a nursing facility. It won’t be because he has gotten to sick; I’ve got my own personal hospital room at home. It will be because of his size, because I can no longer do it alone.
Deanie_Yarbrough@yahoo.com
For all you judgemental people, if you can possibly muster the ability to picture yourself in the position of any parent dealing with severely handicap children, you should first, choose to understand and then provide support to all these parents. They have the toughest job in raising kids. Most parents who love their disabled children, agonize over decisions they make on their behalf. You judgemental imbeciles should quit playing God and judge these people. God will judge them based on their hearts decision. So for ALL you critical individuals who think they're high & mighty, just remember a couple of wise verses from the bible; "He who is without sin, let him cast the first stone (John 8:7)" & also "judge not unless you want to be judged (Matt 7:1)" BE FORWARNED, God is watching everything that's going on. He will deal fairly with it in the end.
Each act needs to be looked at from the intent, not necessarily the act.