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Should severely disabled children be kept small?

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Reuters reported on Nov.1 that the parents of a 6-year-old girl with severe developmental disability decided to stop her growth permanently by injecting estrogen. This therapy was successful, and the girl has stopped growing. (The report suggests that the parents live in Seattle, USA). Do you think such a therapy is morally acceptable?

The parents say that it is extremely difficult to care for a child with profound developmental disabilities, particularly after menstruation begins.

Caring for children with profound developmental disabilities can be difficult and demanding, they note. For children with severe combined neurologic and cognitive impairment who are unable to move without assistance, all the necessities of life -- dressing, bathing, transporting -- must be provided by caregivers, usually parents, and these tasks become increasing difficult, if not impossible, as the child increases in size.

They were concerned about having to turn over care to "strangers" and also about the complications that would arise when the child started menstruating. (web)

What we have to discuss is whether the difficulty of caring could constitute a sufficient reason for halting the growth of a child. It might be acceptable to halt the growth in case that the growth causes to the child an unbearable pain that cannot be cured by any medications. But in the above case, it is the parents, not the child herself, that experience the difficulties of caring.

I don't think this kind of therapy is defendable. I have found a couple of Japanese blogs that discussed this case. Both are negative about the parents' decision. 25 years ago, a Japanese woman with disability was sterilized because of the difficulties of caring for her menstruation. A group of disabled people denounced this case. They believed that there must have been many other similar cases among disabled women living in nursing homes.

Anyway, in the both cases, menstruation seems to be a crucial point. I believe feminist bioethicists have to say something about the important role that menstruation played in these cases. Is menstruation an experience that should be deleted from the life of a severely disabled woman (girl) who cannot care for it herself?

Of course, in the above case, menstruation is only one of the reasons for stopping her growth, but I feel we must not belittle the fact that the parents refered to menstruation when they justified their decision to stop the growth of their daughter.

Related post: Ashley X, comments and criticisms

Photo: The Supreme Court, Tokyo

  -- M.Morioka www.lifestudies.org

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Comments

Hi there

I have only just seen this case myself (the Seattle girl known as "Ashley X") reported in Newspapers today, and so I must admit I don't know a lot about it.

But the idea that this young girl was sterilised and given hormone treatment to stop her growing and to basically stop her menstruating is appalling.

I admit, I myself am not the parent of a disabled child and could only try to imagine what life would be like caring for one - but if I was the parent of such a child, I would NEVER have this done to them.

I personally cannot see how caring for a woman who cannot go to the toilet by herself anyway, would be made more difficult by menstruation.

I find it interesting that there seems to be no references (that I am able to find) to boys having testicles removed to help with their care. Surely there are male reproduction issues that could be just as difficult to deal with in caring for a disabled child.

It seems to me to simply be another negative result of our patriarchal and convenience-oriented society.

Hi

It is an unfortunate fact that more and more society sees people that are different as needing fixing to fit in. This girl instead of being enabled by society is being blamed for the inconvience she is causing it.

Thank you, Sala Kaminzu and steve popple. I think it is a true philosopher's task to find a persuasive logic to say no to this kind of therapy. This is so difficult but we have to try.

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