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Deliberately Stunting the Growth of a Child with Disabilities

Parents of a child with severe disabilities took drastic steps to keep her small, portable, and more easily cared for.

I don't doubt the love of the parents for their child, and realize that carrying for an older child/adult can be quite burdensome physically. Nonetheless, I found this very troublesome, although I haven't sat down to carefully work through the case, the various treatments, and the justifications offered by the parents for each procedure. (It may be, for example, that some aspects of the "treatment" were justified, while others weren't).

I wonder what Commonweal columnist Jo McGowan, who has written movingly about life with a child with significant disabilities, would say about this case.

About the Author

Cathleen Kaveny is the Darald and Juliet Libby Professor in the Theology Department and Law School at Boston College.



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What I haven't seen anyone discuss is the way that their decisions to stunt the growth of her reproductive system essentially pathologizes being a woman. A severely disabled male child would not have been subject to such drastic surgical measures. The parents justified their decision in terms of protecting her from sexual assault, but to me, this line of reasoning seems on a continuum with those who believe that women should just stay in at night, and not travel by themselves, because that's the best way to avoid rape. I can easily believe that the parents are motivated by profound love and concern, but I'm still creeped out by the fact that profound love and concern led to a radical erasure of her gender.

Sterilization of retarded people, male and female, was once seen as a kindness so that the individuals did not have to cope with "confusing" feelings.I'm also guessing that some parents agonize over the care their child might receive if they don't outlive the child, and they hope a family member would be more inclined to take over if the child is "altered."The fact that this girl's parents felt compelled to go to these lengths says a lot about how poorly we support the handicapped and their caregivers.

I found this to be grotesque and while I certainly do not know what it is to be a full time caregiver for a severely (or even moderately) handicapped person, I do know that there are many, many people in the world who are performing that function without resorting to surgically altering the disabled person.Are we to assume that every other person in this situation found sufficient help in caring for their disabled charges except for this one couple?Regardless of how much love and concern these parents have for their daughter, the bottom line is they invasively and permanently altered this girl's physical being without being able to communicate to her what was happening or why.Does anyone really know how much this girl understands or feels about herself? I understand the level of mental retardation that is present, but that says nothing about what and if this child has any perception of herself and if so, what that might be.At what point would we believe we've gone too far? Can we cut off arms and legs if it will keep our disabled persons smaller and more portable? And Jean is right.....if this is what people are beginning to resort to, then there does need to be some drastic improvement in supporting the handicapped and their caregivers.

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