Friday, January 05, 2007

GRRRRRRRR.. Medical Ethicists

Before I begin to rant, I will fill you in a bit on what I'm bitching about. The parents of little girl named Ashley, who has severe brain damage and is pretty much in an infantile state, decided to have her go through surgery to remove her reproductive organs, and extreme hormone therapy to stunt her growth. The parents argument is that this was done for three reasons: to keep her small so they could continue to care for her at home, to keep her from going through the pain of puberty, and to keep from getting breasts, as breast cancer runs in her family.

Now, again before I rant, let me share with you why I have a right to bitch. I have been a caregiver to a severely handicapped child that, before her death, had to be put into a nursing home because she grew to 5'4, too big to be taken care of by her also disabled father. I have also been the sole caregiver to an adult male who at his lightest was still 125 lbs. The medical ethicists around the country have been pitching a fit, claiming the parents "perverse" to stunt this child's growth just to make it easier for them to care for. University of Pennsylvania ethicist Art Caplan went so far as to say that this case was a ' "slippery slope" thinking among parents who believe "the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood."'

Here is my bitch: has any of these learned doctors ever taken care of a disabled person? Have they had to pick up a person the same size as they are out of a bed, or off a toilet, or into a wheelchair by themselves ? have they ever had to look into the eyes of a disabled person after that person has been taken away from everything they have ever known, to be taken care of by strangers who could be indifferent to their well being? I have, and I'd rather cut my own heart out than to ever see it again. Until any of these ethicists can tell me that they have, then I do not want to hear them caterwaul about this little girls parents. This child will never be intellectually or developmentally older than 6 months old. These parents are guaranteeing that they will be able to care for her their whole lives without the worry of dropping or hurting her because she is too big to be lifted. They will never have to see her go through the difficulty of menstruation. They will also never have to worry about her developing health problems from hereditary breast cancer down the road. In the CNN article, the child's own doctors agreed to go through with the procedures because they saw the dedication of the parents, and knew they were not doing this for selfish reasons. They also knew this little girl would not go through further harm from the treatments to stunt her growth.

Until the day our society begins to make caregiving of the elderly and disabled a major priority, I do not want to hear one person criticise these parents. they love their daughter, and want to keep her at home where she would get the best care. Until ethicists learn that caregiving is more than just changing diapers, and they walk in these parent's shoes a few miles, I DO NOT WANT TO HEAR THEM, AND THEY CAN SHUT THEIR FUCKING MOUTHS.


LennyP said...

If you want to believe that her life is valuable enough to maintain it should also be valuable enough to progress.

Tabitha said...

However, I believe there is a difference between Quality of life versus Quantity. The life of a disabled person, fully grown, being cared for by strangers in an overworked inadequate care system, is no life, compared to a child being cared for with love by her family. Which is more cruel?

Tabitha said...
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