Monday, February 1, 2010

From the other blog....Radical Surgery for Boy

Parents Want Severely Disabled Son to Have Testicles Removed to "Give him a better life".
(A.P., Feb/09)

Ashton Tharp is a severely disabled 9 year old. He cannot walk or talk and he is fed through a tube in his stomach. He can barely use his hands and has severe cognitive deficits. Though his actual diagnosis isn't clear, family and physicians are certain that he will never have the life of a typical child his age. "Caring for Ashton is a full time job" say his parents, "we are concerned about the effects of puberty on his well-being". Since Ashton is incontinent and must wear diapers at all times, "You can't imagine the discomfort of having testicles wrapped up in these things 24/7. What will happen when he is a full-grown man? Of course, girls do not have this problem." The Tharps have had to hospitalize Ashton repeatedly for infections around his groin, due to the tremendous challenge of keeping the area clean. Doctors for the Tharps assert that the complete removal of his testicles "will undoubtedly reduce the number and severity of infections, thus making him more healthy and comfortable in the long run". The reduction in hospital visits will also reduce the financial strain on the family.
Furthermore, Ashton's parents, in consultation with medical professionals, have decided to remove his prostate. Since he spends most of his time in a wheelchair, the possibility of his developing prostate cancer is statistically much higher than the norm. With the influence of testosterone removed, many problematic issues of male adulthood will be avoided as well. "If we do this now, while he is young", the parents insist, "he won't grow any facial hair, which, as you know, would have to be shaved off daily. Neither will he suffer from the indignity of an involuntary erection in public. The poor child already suffers enough already and he will not understand what is happening to his body. It could be very frightening to him." Doctors agree that the avoidance of shaving will reduce the possibility of nicks and infections, the scourge of every man's battle with hair removal. The typical growth spurts that cause teenage boys so much discomfort in the knees and legs will be completely avoided as well. "These are loving parents, doing what they believe is best for their son. I admire their courage to do what they feel will improve his quality of life" notes Ashton's primary care doctor.
Disability rights activists are crying foul. One representative insists, "Ashton has a right to grow up with his body intact and where he can have the same choice as anyone else to marry and have children." Though it is unlikely Ashton has the mental or physical capacity for such decisions or activity, activists remain adamant that Ashton's dignity as a human being not be violated. The local director of medical ethics counters, however, "If the concern has something to do with the boy's dignity being violated, then I have to protest by arguing that the boy lacks the cognitive capacity to experience any sense of dignity."

Does this story shock you? Would it have shocked you less had the story been about a girl? Well, I made the story up. What I did not make up, however, are some of the quotes and sentences used in it...from the ridiculous position of the parents and physicians to the completely off the mark issue raised by so called disability advocates. I swear to you, they are taken directly from news articles written about Ashley X and Katie Thorpe, two girls whose bodies became the stuff of public debate.

Now these girls' stories are old news at this point...all this came out in 2007. Both severely disabled girls were up for radical surgeries, both for hysterectomies and one for the removal of her breast buds as well as some tricky stuff with her pituitary to keep her small. I am bringing them up at this point because I have been reading all of William Peace's archived postings (see Bad Cripple, "Ashley X and Katie Thorpe and a Cultural Divide", Oct. 16, 2007, sidebar) and felt that I had to weigh in on this since I DO have a DAUGHTER who is severely disabled.

I hope that turning the tables and making the story focus around a boy makes people think through the sort of abomination that is considered acceptable to perform on girls. For some reason, women's reproductive organs have always been considered an inconvenience to be dealt with surgically...but the flip side never applies. What a hue and cry would arise should our precious boys' family jewels be tampered with...even routine circumcision has come under fire. Yet the reasoning applied to justify surgery on the girls could be easily transferred to the boys. Scary, isn't it? I hope you think so.

So, here's some advice to you parents of severely disabled girls. There is a high chance that, if your daughter is on the most extreme end of severe disability, she will never have a period at all. If, however, your daughter is going to have a period, deal with it this way: If she has headaches and cramping, give her Motrin and a hot water bottle. If she is incontinent, you just change her briefs as usual...it all goes in one place. If your daughter has big breasts, good for her!! She got'em for free! You can use a camisole to keep everything comfortably in place. If you are afraid of her being assaulted, then supervise her and get good reference checks on any respite help. If she is moody, give her some evening primrose oil or, alternatively, someVitex tincture (a.k.a. chaste tree, "vitex, agnus-castus") and be thankful she is not a regular teenager arguing with you at every turn. Finally, if she grows up to be a big girl, buy a lift and use it, like everybody else. If she "doesn't understand what is happening to her body", explain it to her. Surgically altering your daughter will NOT, I guarantee, affect the fact that you are working 24/7 to take care of her. Buck up, get help if you can and find people who will fight for more.

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