A controversial procedure to limit the growth of severely disabled children to keep them forever small – which ignited a fiery debate about the limits of medical intervention when it was first revealed five years ago – has begun to spread among families in America, Europe and beyond.
Five years ago details first emerged of Ashley, a nine-year-old girl living near Seattle. She was born with developmental disabilities that meant she was unable to talk or walk, and continues to have the cognitive ability of an infant.
The core of the treatment was hormone therapy: high estrogen doses to bring forward the closure of the growth plates in her bones, which would in turn stop her growing. In addition, surgical interventions included removal of her nascent breast buds to avoid the discomfort of fully-formed breasts later in life, and a hysterectomy to avoid menstruation.
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?“
There are two dimensions of evaluation here. The positive, and the normative. As alluded to above the menu of possibilities are going to expand radically in the foreseeable future. So there’s no point in putting our heads in the sand on this. You start out with preimplanation genetic screening, and move all the way to irreversible physical changes as outlined in the story at the link. In the specific case the rationale for these changes is pretty straightforward; humans with the minds of infants or toddlers but the bodies of adults can be extremely difficult to control. I have a little personal experience in this area, as I worked with a mentally handicapped young man as his “minder” for a term in secondary school. His cognitive profile was probably similar in many ways to a one to two year old, but he was of average height and somewhat above average weight. One of the major issues with this young man is that he needed to be kept under surveillance, as he had a tendency throw fits and assault random people. Conventional moral reasoning simply did not work with him, because as I said he was barely a toddler mentally (he has a very minimal comprehension of language). Now expand this to the problem which parents and relatives have in caring for an individual with the physical capacities of an adult, but the mental aptitudes of a very young child. Imagine the temper tantrums of a two year old in the body of a thirty year old. This is a reality for many.
But let’s move to the normative dimension: who makes these decisions, and who decides who and what an individual becomes? The former is to a great extent a prosaic matter of power politics. Parents and institutions, civil and governmental, have long battled over children. But the latter is a deeper philosophical issue. What makes you you? There are many individuals for whom their religious identity is simply an essential part of who they are, but usually that identity is conferred upon them by their parents. Do the parents have the right to create such an individual, with a particular sense of self? My point is that when you moot the issue of identity in a deep fundamental manner you open up a huge can of worms, and broader issues which go back to David Hume and further deep into the mists of antiquity.
Finally, as a new parent these sorts of stories have a heightened salience for me. They are usually presented in a narrative style which strips away the substance of lived experience, and pits several actors and agents against each other. Here you have the parents and a group of activists, along with the governments and hospitals. But the organic reality of living decades as a caregiver for a profoundly disabled individual is removed from the picture. The impact that it might have on other children, or on your social relations more generally are not present in the narrative. We live in a world where many parents neglect their children, or enter into the stage of life of being a parent with relative casual interest or focus. But these particular parents, who are put in a position of extreme difficult emotionally and materially, are monitored with great care, and have a whole cadre of public interest lawyers devoted to making sure they do the right thing (the “right thing” being what others determine).
The root problem we have as a society about discussing these issues is that we don’t have a fully fleshed out explicit model for what the good life is. There are some activists in the disability rights movement who deny that the lives of people we generally classify as disabled lacking in anything. This is a complex question, because to some extent we are all imperfect. But is a world without children in wheelchairs or children with Down syndrome a lesser world? Too often the arguments in favor of allowing for nature to take its course in these matters are reminiscent to me of the arguments of Leibniz. I lean against the idea that we need the physical and mentally disabled, at least more than the suffering which these disabilities impose upon individuals who are the subjects of the suffering, or the families around them. I do not believe that we must evaluate all questions as matters of individual utility, but that is certainly where we should start.