The Ashley Treatment

I had never heard about this case, but apparently it got some press. Ashley X was born with severe brain damage as an infant, and while alert and attentive to her environment, cannot talk, sit up, hold up her head, hold an object, or eat on her own. Her parents and doctors attenuated her growth and development by, among other remedies, a hysterectomy and removal of breast buds. An ethical uproar apparently ensued, which I missed until I came across this yesterday. It is an argument against Ashley and her parents.

The degree of disability is not important nor is the type of disability. We people with a perceived disability are simply the other. Given this, I do not consider myself one iota different from Ashley in spite of the great difference in our cognitive ability. In coining the term the Ashley Treatment doctors have not only over reached the bounds of ethics in medicine but sent a shot across the bow of every disabled person in American society. The message is very clear: disabled people are not human—they are profoundly flawed beings and extreme measures will be taken to transform their bodies. Consent is not necessary as the mere presence of people with a disability, particularly those like Ashley with a profound cognitive disability, is inherently unacceptable. Modern science however has come to the rescue and doctors have the technology to save us. The problem with this line of thinking is that it is inherently dehumanizing. Ashley need not be saved, surgically altered any more than me or the people listening in the audience.

It is on issues like these that I part ways with many activists for the disabled, whom I largely support for their advocacy and success in changing the treatment of cognitively disabled individuals.

First of all, the disability does indeed matter. The notion of autonomy presupposes rational abilities. It is in virtue of rational abilities that we grant people autonomy - which simply is the right to exercise their rational abilities. Cognitively disabled people cannot exercise rationality (at least, many of them cannot). Neither can children. So while one is a child, one's parents must act in their interest. Parents must choose what children eat, with whom they socialize, how they are educated, when they shower. All of these are decisions it is entirely inappropriate to make for another adult, because it violates their autonomy. Children do not have autonomy, and neither do the severely intellecutally disabled.

Which brings me to consent. Consent is only useful if it is a) informed consent, and b) arrived at through rational processes. Consent cannot be granted by people who lack adequate information and and the cognitive processes necessary to make decisions. A child cannot give consent for a vaccination, because he cannot understand fully what is at stake. Ashley cannot give meaningful consent.

Given that she cannot give consent, a decision not to operate is just as much a decision made for Ashley as a decision to operate. In cases like these, paternalism is unavoidable.

Just because Ashley lacks rights to autonomy or bodily integrity does not mean that she has no rights. I think this is what makes many disability activists, such as the one quoted above, nervous. They are also remembering the callous treatment of the intellectually disabled of the past. But recognizing that she cannot make decisions does not mean she is not to be valued. She has a right to beneficence. She has a right that someone care for her and make her world as comfortable and happy as possible. These are by no means insignificant rights.

The other thing that seems curious to me is the insistence on looking only at Ashley's interests. Ashley's interests matter morally, and I do think her interests should be weighed the same as a typical person. But her family also has interests. Don't they matter morally?

I am a bit sensitive on this issue. Just a few months ago, it was a live possibility that my son would be in Ashley's condition. Now he can hold objects, and sometimes hold his head up. He seems headed in a better direction than Ashley is. But he is still entirely tube-fed. It is a live possibility that he will never walk or be toilet-trained (although thankfully it is looking increasingly less likely). He is also 95th percentile for height and weight. Our ability to care for him will be seriously circumscribed by size alone. The future is bleak for parents in such situations, as it is for siblings. If their lives can be made easier, that is morally important, too. Not to mention it allows intellectually disabled people to remain at home cared for by loved ones longer.

In short, we can't be talking about bodily integrity, autonomy, and consent when it comes to the intellectually disabled. We must be talking about beneficence. And a treatment impacts not only the recipient, but the entire family. Ashley's family was justified in looking at the entire situation and choosing for their daughter what she could not choose for herself.

1 comment:

  1. I simply can't imagine the presumption these non caregivers are making. As to the specifics of that case, I am not remotely qualified, but it should seem obvious if the family and medical staff in conjunction support a course of action, then who am I to step in and make judgements?