I hesitate to write this post, because I know it will offend some people I care about and appreciate deeply: disability advocates. They are fighting the good fight for respect for my son. I agree with so much of what they do.
But I disagree with some of them when it comes to the Ashley treatment. Or at least, their line of reasoning, if not their conclusion. The Ashley treatment is recently back in the news because it is apparently on the upswing. The Ashley treatment is named after a girl with profound developmental disabilities. She cannot walk or talk and has the developmental age of an infant. Her parents requested, and received, medical treatment involving hormones to retard her growth, removal of her breast buds, and a hysterectomy. It makes her care much easier at home.
As a caregiver to someone with severe developmental disabilities, I will say this issue is no small potatoes. I have a non-ambulatory two-and-a-half year old who is pretty big for his age, and we are already facing difficulties. He has the gross motor skills of a six-month-old. His grandparents can’t babysit for more than a couple of hours because they can’t get him up and down the stairs. Bringing him to visit someone else’s house is a logistical nightmare. He can’t sit for more than a few minutes on the floor or in a regular chair. Since his cognition is more advanced than his gross motor skills, he wants to explore everything, and ends up scooching all over the floor, grabbing stuff. Like power cords. Trying to remove a wet, heavy, hypotonic child from a bath is nothing to sneeze at, either. It is literally a daily worry about what our future will look like if we can’t get him walking and he ends up five times his current weight.
My kid is cognitively ahead of Ashley, and can already make transitions (standing with help to get out of a wheelchair to a bed). So it’s not the same situation. I’m still pretty sure we wouldn’t do it if we did have the exact same situation. Not, however, for the reasons cited by some disability advocates.
“This is a violation of the civil rights of individuals, and it should be prohibited,” Decker said. “Parents have rationalised that this is an OK thing to do, but it treats people as though they have no worth and that’s a slippery slope that could end with the idea that people with disabilities don’t have to be kept alive or integrated in society.”
Silvia Yee, a lawyer with the Disability Rights Education & Defense Fund that is run jointly by disabled people themselves and parents of children with disabilities, said: “This is what we were fearing. It is becoming just one more choice on the menu of possibilities – a medical operation that will change a person’s life. Who has the right to decide to change an individual into a different entity?”
Autonomy is granted out of respect for each person’s rational processes. But if you don’t have rational processes, autonomy can’t be the basis for your medical decisions. There is no way to give informed consent.
I violate the autonomy of my typical healthy children on a daily basis. I decide whether they are circumcised, what they eat, what their education will be like, whether they receive vaccines, what medicines they take, whether they get braces, whether they can leave the house and when and with who. These are totally inappropriate decisions to make for an autonomous person. Because their rational capabilities are not developed, we don’t grant them autonomy in medical (or other) decisions. Of course, as they get older, we grant them more and more autonomy. And for developmentally disabled people with less intensive needs, they should also be granted as much autonomy (in everything!) as possible.
What the disability advocates quoted above seem to object to is that medical decision-making is done by someone other than the patient. Yee claims that caregivers don’t have the right to choose a medical operation that will change someone’s life. We have had to make several decisions about medical operations that changed my disabled child’s life. We will always be making those decisions for him. My son did not consent to getting a feeding tube; we did. We had to make the decision for several other surgeries. I honestly don’t even know what she means by changing the child into a different entity (that’s an odd, unfamiliar version of personal identity). I can’t imagine disability advocates saying we couldn’t get him a feeding tube.
My guess is that their objection is that such surgery is more in the caregiver’s interest than the patient’s. Some of these people seriously lack sympathy for caregivers. Decker says they are treating children as if they have no worth, and here‘s another:
I have found out that since the crass and self-serving advertisement of the “treatment” by a certain little girl’s parents, and in spite of the fact that the hysterectomy performed on that little girl was deemed illegal (too little, too late), many doctors are now “quietly” performing this “treatment” at the request of parents.
Jesus. These caregivers are trying to manage their own lives, and often the lives of siblings of the disabled. They’ve already given up a lot. Even if you disagree with them, can you express your disagreement with a little more sympathy? I’m not so sure it’s totally wrong not to take the caregiver’s interests into account at all when making medical decisions. Caregivers have interests, too. Many autonomous people make medical decisions that are solely in their own best interest. But many others take the interests of their family members into account. There’s no saying what a disabled person would do. But not doing anything is also a form of decision. Also, if it actually makes the difference between being cared for at home and being institutionalized, then the Ashley treatment might well be in a disabled person’s interests.
So how can we decide what makes the Ashley treatment wrong? Where it seems wrong to me is not a violation of autonomy, but of dignity. It seems disrespectful of her and of the woman she is becoming. But I could see another family coming to a different conclusion based on their own situation. I’m not so sure that I’m right that I would try to talk anyone out of it.
In any case, when talking about the profoundly disabled and ethics, we need to come up with a way to address our responsibilities to them without using autonomy, and without going back to the bad old days of not taking their interests into account at all.