I am generally not a fan of re-printing material verbatim from other locations on the web, or re-hashing a discussion to which I may simply give a link. But in this case, I will make an exception because it is so important it deserves an exception.
Amelia is a little girl with Wolf-Hirsch-horn syndrome. You can read her story here.
The short version of her story is that she needs a kidney transplant, and this surgery is potentially dangerous due to potential brain damage. The problem is that the attending physician does not believe Amelia should have the surgery because she is "mentally retarded". I am not sure of all of the governmental rules of organ donation in the United States but it appears your IQ and adaptive functioning are enough to condemn you to death if you need a new organ.
Keep in mind that by definition 2% of the population is "mentally retarded" because this diagnosis is based on cognitive ability combined with adaptive behaviour (ability to communicate, socialize, and take care of one's self) relative to the rest of the population. By definition, 2% of the population is always mentally retarded. We can get collectively smarter or better at being independent, or collectively less smart and less independent, and 2% of us will still be "mentally retarded". In other words, this diagnosis is not criterion based (if can't do X, then they are "mentally retarded")!
The doctor's response was bad enough, but the social worker's response was even more appalling. She was in the family interview to try to convince the family to give up, because hey, Amelia won't go far in life anyway, and when she needs yet another kidney in 10 years, Amelia's parents may not even be around to take care of her.
Really? That's the value we put on a life? What a slippery slope we have started. Mentally retarded today, perhaps tomorrow the elderly, or the low class factory worker. In fact, why not simply ration all health care based on our usefulness to society and our potential measure of quality of life? It's well known in Canada, for example, that people aged 65 years or higher cost double the annual health bill of people under 65, and people 75 and older double the 65-year old people. Easy way to save money - if you are 65 or older, pay your own way or suffer because hey, you might need more surgery later and what are you going to do with your life anyway? You're 65!
If anyone spouted off this nonsense they would be laughed off or lynched with extreme prejudice. But apparently my logic does not apply to "mentally retarded" people at the Children's Hospital of Philadelphia.
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