Human Exceptionalism

On Keeping a Disabled Girl “Small”

I have had several requests from readers to comment on the story of the cognitively disabled girl named Ashley, whose parents subjected her to hormone treatments and invasive surgeries (hysterectomy, mastectomy) to keep her “small.” The point of these “treatments” was to ensure that by remaining at about 75 pounds, Ashley’s care could still be provided by her parents. I did not comment immediately because I wanted to think about it, and part of me hoped avoiding opining at all because it is a very unusual case involving good people. But now media are calling, and so it is time to take a thankless step into the void.

I certainly don’t question the parents’ motive. They thought this was the best way to continue to be able to care for their daughter at home. Still, the core questions as I see them, are whether these interventions supported Ashley’s intrinsic worth and whether they were therapeutic and therefore ethical for a doctor to perform.

The answer to both questions, I think, is no. The treatment involved invasive surgery requiring full anesthesia, the potential for infection and significant pain, perhaps even death. The purpose was to prevent healthy and natural development, not treat an illness or ameliorate an injury. The motive was love, I agree. But, in the end, I think it was wrong.

Think about it: If Ashley were not profoundly disabled, the parents would be brought up on charges of child abuse for forcing her to have unnecessary and untherapeutic surgery. Or consider this somewhat crude analogy (which I don’t intend as a cruelty and I know is inexact); parents who give their daughters female circumcision motivated solely by love in the firm belief that the procedure is the only way to guarantee their daughter a future husband and the security of marriage. Their motives might be utterly virtuous, but most of us would still call it a mutilation. Or what if the only way to keep her small were to amputate her legs? Would that be acceptable?

Cases like this are very tough. The parents, I believe, genuinely wanted to do what was right by their daughter. But in the end, actions matter more than the motive. I believe the doctor should have refused to perform the surgeries and probably not have agreed to prescribe unnecessary hormonal therapies. As for the parents, I honor their love and devotion to Ashley, but this was a step too far.

I hate to say it, but I think any such future cases should be decided beforehand in a court of law, with full arguments made on both sides of the question. I can’t think of another way to protect the profoundly disabled from well meaning but potentially dangerous and unneccessary medical procedures.

Post Script: How’s this for an irony. Ashley requires a feeding tube. If her parents had wanted her to receive “death with dignity” by removing tube-supplied sustenance, there undoubtedly would have been less of a ruckus and cluck-clucking.

Post Post Script: What if Ashely were a boy and rather than a hysterectomy, he were given a castration. Would this change people’s thinking about the issue?