Recently, I received an article about the ethical debate over physically altering disabled children, making it easier for them to receive care. Several years ago, “The Ashley Case” — the story of parents who had undertaken such measures on their daughter — made headlines.

Each case presents a similar scenario: a child is born with severe disabilities and will presumably require very demanding care the rest of his or her  life. Faced with this, some parents have decided, with the aid of their physicians, to undertake medical interventions which affect the growth and maturation of their child, keeping him or her physically smaller and typically preventing the child from going through puberty.

The parents involved tend to cite the same motivations: it is easier for them to move, bathe and care for a smaller child than a larger one, and they claim this enables the child to be more a part of family activities (the ease of transport makes it more likely to be included in family trips, etc.).

The interventions may vary from case to case, but often include things like giving hormone treatments — especially high doses of estrogen which can alter future physical growth — as well as surgical alteration (for example, removing breast nodules or performing a hysterectomy in girls) and careful diet restrictions limiting calories.

Not surprisingly, such interventions are extremely controversial. While the parents naturally cite the benefits of such decisions, many others — including advocates for the disabled — strongly oppose such measures and see them as inappropriate and demeaning.

What would the Catholic Church say? Clearly, this is not a specific issue where we can open the catechism and find a ready answer. Instead, we are left to examine it using various principles and values coming from our faith.

While there are many we could mention, in the interest of brevity, examining just two can at least begin to offer some insight. The first would be the issue of experimentation on human subjects — specifically on those unable to speak for themselves. The term “experimentation” may strike some people as odd, but in point of fact, the risks involved (especially the long term risks) of such interventions are simply unknown at this time. Therefore, I think it is fair to call these interventions “experimental.”

Respect for the subject of an experiment requires informed consent be given. For those tasked with making such decisions for someone unable to give their own consent, one must ask: “Who is likely to benefit directly? The person involved or someone else?”

If the answer is “someone else” then it becomes morally problematic — especially if there is risk of harm involved. It is one thing to risk some harm for oneself in the interest of helping someone else — it is quite another to impose such a risk on others unable to speak for themselves, especially if it is unclear how or to what degree they may be helped or hurt in the process.

The second thing we can examine is the effect on the integrity of the child’s body. Bodily integrity is a
good in itself and should only sacrificed if it would mean preserving the health or life of the individual.

Therefore, we need to ask the question “Is there a problem with the body that warrants such measures?” Are the body parts being altered or removed because they pose a threat to the child? Are they diseased or damaged? Or simply an inconvenience or burden for someone else?

These cases warrant far greater analysis and raise many other ethical questions. Perhaps more than anything, they remind us of the great sacrifices that parents of disabled children face and generously make each day, as well as the natural fears they encounter.

Hopefully they also remind us as pro-life people to offer such families enough support so that the temptation to take such dramatic measures will be met with a greater confidence that such measures are unnecessary.