Disability, the “Quality of Life,” and Amelia Rivera
The Children’s Hospital of Philidelphia in the United States has allegedly refused to allow two-year-old Amelia Rivera to receive a kidney transplant–even if donated by a family member specifically for the purpose–because they assume her ability to enjoy life–i.e., what they call her “quality of life”–is somehow diminished simply because she has an intellectual disability.
I encourage readers to follow some of these links so they can learn more about the situation and what people are saying about it:
First, read what Amelia’s mother has said.
People wanting to hear from the other side can read a generic statement from the hospital (though it does not refer to Amelia Rivera by name) at CHOP’s Facebook page.
For people familiar with their excellent work, it should be no surprise that the organization “Not Dead Yet” has blogged on the situation as well. (For those not familiar, “Not Dead Yet” campaigns to educate medical personnel and the general public to stop assuming that having a disability means that your life somehow is no longer worth living.)
If you want to find many more links to what many other bloggers have said, visit the Children with Special Needs page at About.com.
I would argue that CHOP’s decision to refuse a kidney transplant for Amelia Rivera would be in violation of international law: learn more about the Convention on the Rights of Persons with Disabilities (CRPD), in particular Article 5 (non discrimination and equality) and Article 10 (Right to life). I feel doctors need better education about the real lives of real people with disabilities and how we actually experience our lives–this would relate to Article 8 in the CRPD which calls for countries implementing the CRPD to take action to raise awareness about human rights for people with disabilities.
A petition urging the hospital to allow Amelia Rivera a kidney transplant is available at the Change.org site.
The Change.org site also has another petition urging change in policies affecting decisions about organ transplants nationwide in the United States.
Thank you to Dave Hingsburger for helping bring this situation to my attention. Speaking of Dave, it seems suitable to mention that he is heading a campaign for people to use the date of January 23rd as an “International Day of Mourning and Memory” to honor the memory of people with disabilities who have lived and often died in institutions never knowing freedom (there’s a facebook page on this also). He also wants for the day to celebrate people with disabilities who have advocated for their own value of life–for example, a woman with Down Syndrome named Sandra Jensen who successfully fought against a hospital’s decision to refuse her a life-saving organ transplant. This day could also be used as a day of action to help bring freedom to the millions of people around the world who still suffer in various types of institutions. If this interests you, a few organizations you may want to investigate include ADAPT, People First (self advocacy movement led by people with intellectual disabilities, there are chapters around the world try googling for one in your country or region), Disability Rights International which fights against the institutionalization of children with disabilities, and various self advocacy organizations led by autistic people such as ASAN. And there are many more organizations you could investigate, so please don’t view this as a comprehensive list.
Learn vocabulary and feed the hungry at freerice.com
ReunifyGally 
Andrea, thanks for bringing so much information and so many opportuntities to get information and help out. I’m always impressed with your willingness to gather and share information. This is really, really helpful.
Dave Hingsburger
16 January 2012