Monday, February 1, 2010

My Two Cents' worth on Growth Attenuation


Dr. Peace sent me a fairly recent paper on growth attenuation...about which he has already posted...entitled "Ashley Revisited: A Response to the Critics". I, of course, have to have my say in the matter, since the whole thing continues to rank high on my list of "things that I find appalling".

I won't repeat what Bill has already said other than to note that the paper is quite poorly written from start to finish. It has all the markings of something written in a hurry and never given a second reading. You get the impression that the authors of the paper are not really interested in responding to "critics" because the whole thing is a done deal in their minds. In any case, I would like to pick out one part of the paper in particular, to show you just how very tenuous some of the arguments are in the paper.

The paper is divided into segments with titles representing objections to growth attenuation. Below is # 20. Go ahead and read it.

Objection 20: This is gender discrimination: You wouldn’t do this to a boy

“A penis and scrotum may present difficulties when positioning boys with the same type and degree of disability as Ashley’s, but it has not been suggested that the penis and scrotum be removed because of ease in positioning.”(Savage 2007)

There is no reason that a request for growth attenuation would be taken any less seriously for a boy than a girl. In fact, given the arguments for growth attenuation, it is more likely to provide benefit to a boy with a condition similar to Ashley’s, because boys tend to be taller and heavier than girls.

The suggestion that removal of a boy’s penis and scrotum would somehow be analogous is simply incorrect. Ashley’s ovaries were spared, the female organ most analogous to the male testes, and her urethra and external genitalia were left intact. Testicle removal or genital removal would be unjustified, not because of gender, but because there would be no patient-centered reason to perform those procedures.


First off, the objection is legitimate. So far, the procedural details of G.A. have been laid out for girls only. Note, however, that the authors choose a most extreme expression of this concern for their "supporting quote" which can be shortened to "lop off the boy's genitalia". This puts the entire objection into question. A more appropriate expression of the objection would be to note that no procedural details of G.A. have been laid out for boys. Why is this so...it appears as though only girls will be recommended or considered for the treatment. This is discriminatory based on gender.

Instead of addressing the real issue at hand, the authors address only the specifics of the quote, which is, of course, easily dismissed. Had it been a carefully worded objection, they would have had to explain themselves. It is indeed possible to remove testicles from a boy and dose him with hormones and therefore stunt his height and weight and stop secondary sexual characteristics like hair growth. As an aside here, I can tell you that shaving a fully grown, severely disabled male is a far more difficult task than dealing with a severely disabled woman's period...that all goes into the diaper, ladies and gentlemen. The paper is full of this particular sort of spin, whereby a legitimate objection is trivialized with a weak quote...or even a quote taken out of context...and then only its specifics addressed in a very literal way.

In the end, they decide that for boys, there is no "patient centered reason to perform those procedures", yet, as I described above, the procedures are fundamentally similar to those performed on girls. By reason of their own argument then, G.A. has "no patient centered reason to perform those procedures."

This is just a tiny sampling of a paper full of really bad reasons to support G.A. filled with really bad misrepresentations of legitimate concerns. It's a sorry bit of work and someone should take them to task on it. In end, the only people who can stop G.A. from happening are the parents of kids with severe disabilities.

Just say NO.

P.S.

Here is the quote in its entirety, in context...quite a different meaning, you will see:

Large breasts can be uncomfortable, although there are many women with large breasts who do not choose to have them removed or even reduced. Her parents worry that her breasts will create difficulties in strapping her into her adaptive seating. A penis and scrotum may present difficulties when positioning boys with the same type and degree of disability as Ashley's, but it has not been suggested that the penis and scrotum be removed because of ease in positioning. A boy with the same disability will not reproduce and can void through a shortened urethra, much like a girl's urethra, and surgery may require minimal cutting. So the same argument about justifying removal of the uterus and breasts could be made to remove a disabled boy's penis and scrotum, but that sounds more like mutilation.



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