I've commented before on the fight that Joe and Chrissy Rivera have waged with the Children's Hospital of Philadelphia (CHOP) to get their three-year-old daughter, Amelia Rivera, a kidney transplant. In January, Chrissy blogged that syndrome that a CHOP doctor had indicated to the family that Amelia's Wolf-Hirschhorn diagnosis created concerns quality of life concerns, given that she's "mentally retarded", that made her ineligible for transplant. The Riveras did not want her placed on the donor transplant list, as Chrissy was willing to donate a kidney. They were asking for the hospital to do the surgery.
Wolf-Hirschhorn syndrome is a chromosomal condition, It causes physical and intellectual disability, as well as a variety of severe health problems.
The hospital denied the allegations that they discriminate on the basis of intellectual disability, as Amelia Rivera's case implied. However, once the story hit the national news, people quickly decided that something had to be done. An online petition demanding that the hospital do Amelia Rivera's transplant surgery got over 50,000 signatures.
Good News for Amelia Rivera
According to Disability Scoop (http://www.disabilityscoop.com/2012/08/09/after-girl-transplant/16208/), it was the petition that prompted CHOP to re-evaluate Amelia Rivera's case. She's been cleared for the transplant surgery, with her mother as the donor.
Good for CHOP for Coming Around, But...
I don't know about the rest of you, but I find the idea of a medical system where people are deemed eligible or ineligible for transplant surgeries based on the medical professional's assessment of potential quality of life profoundly disturbing. I've already heard too many stories about doctors (and other professionals who use the medical model of disability) who would rob people with intellectual disabilities of fundamental rights (and this has, at times, included the right to life) because of quality of life/"contribution to society" issues.
It's a way of viewing people that not only makes major assumptions about the person's capacity to have a fulfilling life (assumptions that are inappropriate in the extreme for a three-year-old who almost two decades of development ahead of her), but of the capacity of the people around her to assist her to develop a life that she finds meaningful. I've worked almost exclusively with young adults and adults with intellectual disabilities in my career, and been thrilled with how far some of them come with setting and meeting life goals in a very short time with good support from formal and informal networks. To say that
"This three-year-old isn't going to have a good quality of life because she's mentally retarded" and then deny a treatment on the basis of that is criminal to me.
Yes, good for CHOP for coming around and seeing that they should be doing this transplant surgery for
Amelia Rivera. However, it saddens me that they had to come around at all. For anyone who doesn't think that people with disabilities don't face hurdles in society, ask yourself if any doctor, ever, would have said about a three-year-old without a disability, "Well, I don't think that this child will have a good quality life, therefore I think she's ineligible for transplant."
Three years old.
I submit that it wouldn't happen. What do you think?
Thank you to everyone who signed the petition and fought for Amelia Rivera.