Late last year, a working group issued an opinion on growth attenuation, one aspect of the highly controversial Ashley X case that made headlines in 2006. Ashley X, a young girl with developmental disabilities, was subjected to hormone treatment to stunt her growth, removal of her breast buds, and removal of part of her reproductive tract at a Seattle hospital. Her parents claimed the procedure would improve her quality of life. Many disability rights activists disagreed.
The members of the working group chose to focus on only one issue, and even they couldn’t reach an agreement. What they came up with was a ‘moral compromise,’ arguing that growth attenuation could be ‘morally permissible’ in the case of children with ‘severe’ developmental disabilities:
A determination of permanent developmental impairment requires ongoing periodic developmental assessments in which the child shows little progress in motor, communicative, and social and emotional development past an infantile stage.
The paper includes several vignettes representing opposing sides of the issue, including pieces by parents of disabled children. These vignettes were not, to my knowledge, written by actual people with disabilities although some members of the working group were disabled. Pro-attenuation arguments include language like ‘private medical decision’ and ‘burden.’ Opponents discuss issues like bodily autonomy and respect.
Several issues come up in pieces supporting growth attenuation. Sandy Walker makes the claim that ‘more services’ won’t help her disabled daughter Jessica, arguing for growth attenuation. She’s incorrect. Many of the issues she identifies can in fact be remedied with more services; providing Jessica with a carer to assist her aging parents, for example. Making social venues universally accessible. Promoting universal design of homes and other buildings. More social support for people with disabilities would make problems like inaccessible bathrooms a moot point.
Norman Fost, also writing in support, suggested that growth attenuation is a ‘private medical decision.’ What he left out of his analysis, suggesting that the rest of the community shouldn’t be allowed to comment on how parents make medical decisions and talk about what kinds of factors might go into those decisions, was the fact that growth attenuation is not a ‘private medical decision.’ It’s a very public one, with considerable social and ethical considerations. He seems offended that ‘third parties’ might be ‘offended’ by growth attenuation and related procedures but doesn’t explore why that is.
The panel appeared to ignore the fact that some activists are challenging what kinds of medical decisions parents should be making on behalf of their children; should Deaf children have Cochlear implants against their will? Can parents decide on cosmetic surgical procedures for their children? Children are often treated as objects, rather than human beings, and nowhere is this more stark than in the approach to medical care for children, where children are not legally allowed to exercise decisions on their own behalf and their ability to participate in medical decisionmaking is dependent on their parents and care teams.
Growth attenuation also speaks to some deeply disturbing trends, referenced by Eva Feder Kittay in her opposition piece. A developmentally disabled child subjected to procedures to keep her small for life may be viewed as an ‘angel’ but she’s a human being. Disability is often treated socially with patronising language and attitudes. Suppressing the natural development of people with disabilities is an expression of this, and as Kittay points out, the arguments that developmentally disabled people ‘can’t comprehend’ don’t hold water when we don’t know what they can comprehend because very few people bother to establish communication with them.
Sue Swenson, also opposing the procedure, argues for autonomy for disabled children and talks about issues like social inclusion, decisions made for parental convenience, and inclusion of children in medical decision making.
The working group claims its findings aren’t in response to the Ashley X case specifically, but are intended more generally to act as a guide for parents and medical facilities considering growth attenuation. The report touches on and then dances away from issues important to the disability rights movement, like equal access for all, deinstitutionalisation, extremely high rates of rape and abuse for people with disabilities, denial of body integrity to people with disabilities, and the long history of forcible sterilisation (which continues to this day).
The implications of this ‘moral compromise’ are far reaching, and some of them are preemptively addressed in the report, which hastens to assure us that significant safeguards should be in place to prevent the use of growth attenuation for convenience, or in cases where children do not have ‘severe’ developmental disabilities. This, as Kittay points out, is a form of discrimination. To determine that an elective procedure is permissible in cases where developmental disability is the sole criterion is to suggest that growth attenuation is not acceptable for other children, which rings to my ears as a suggestion that children with developmental disabilities are not fully human, and are thus not entitled to the same human rights that other children are.
The report’s decision to shy away from the other aspects of the Ashley X case is also gravely troubling. The reasoning put forward in defense of removing Ashley’s breast buds and reproductive tract was a mixture of medical justification (to prevent breast disease and limit bleeding from high dose estrogen used for her attenuation therapy) and social reasoning (preventing her maturation would limit her risks of sexual assault and abuse). While the medical excuses may be sound, the social ones lack water; children are just as at risk of sexual assault and abuse as adults, particularly developmentally disabled children. One consequence of removing her reproductive tract is that pregnancy, one of the most obvious pieces of evidence for rape in cases involving people with cognitive and developmental disabilities, is no longer a possibility.
The decision to abstain from discussing the thorny bioethics issues behind the Ashley X case is a reminder, yet again, that the wishes of nondisabled parents of disabled children should always be deferred to over the voices of actual people with disabilities, including people who share disabilities with those children. People wringing their hands over whether such procedures are okay and whether children will resent them when they grow up could turn to adult people with similar disabilities and ask them.