I read a heart wrenching and infuriating story yesterday morning and haven't been able to stop thinking about it. I have gone back and forth about how, and if I should write about this... it touches several topics close to my heart and it's quite difficult for me to "go there"... but this isn't about me. This is the story of sweet Amelia Rivera and her amazing family. They need help and their story needs to be heard. Things like this cannot continue to happen.
Please read about the Riveras here and then come on back...
There are so many things wrong with what is happening to the Rivieras. I really am not sure where to begin. I guess I will start with the obvious, the narcissistic transplant doctor who thinks that "mental retardation" is an appropriate term and how he seems to believe he is either a psychic or God. I thought the deinstitutionalization of intellectually challenged people happened in 1965, please explain to me how this is any different? Where are the Kennedy's when you need them?!?
How can this "doctor" believe that being intellectually challenged should limit anyone's life... dare I say he speaks as if Amelia is not worth the life saving procedure? How does a handicap make one's life less valuable? And to tell a devoted and loving mother that he has "been warned" about her... warned that she would do what... anything to save her daughter? Fight with every ounce of her being to get what her daughter deserves? That she won't allow her daughter's dignity to be disparaged? Or that she just simply won't give up on Amelia?
Although I do believe this doctor is grossly inappropriate and I would
love to place complete blame on him (along with some other painful things) unfortunately it seems I can't. According to the Transplant Guidelines it appears that hospitals have a bit of leeway when determining their eligibility criteria. One hospital lists this in their guidelines...
Absolute contraindications or disqualifying conditions for kidney transplant include:
• Severe mental retardation and/or multiple congenital abnormalities associated with severe limitation (cases to be discussed by the hospital’s bioethics committee)
How should anything other than the standard medical contradictions disqualify anyone from a life saving procedure?
Ohio State University published a study in 2006 that states-
Individuals with IQs between 50 and 70 were significantly disadvantaged in seeking heart and liver transplants and they were moderately disadvantaged in seeking kidney transplants, while those with lower IQs were even more disadvantaged.
It also states-
House and Thompson’s (12) review of the psychiatric aspects of organ transplantation asserted that patients with significant MR are poor candidates for organ transplantation. They did not explain this opinion other than to suggest likely problems with compliance.
And then the most outraging comment-
Savulescu (13) questioned the public policy of equal access to donor hearts for people with Down syndrome. We should face reality, he urged, quality and length of life and probability of benefit (and cost of treatment) are relevant in determining who should receive treatment [heart transplantation]. Severe disability in some circumstancesshould disqualify a person from access to scarce resources .
Amelia's doctor and her social worker (whom I'd also like to kick in the teeth) at CHOP's (really CHOP's, really? I expected better from you) seemed to be eluding to the same "concerns". That because of Amelia's intellectual abilities and her need for constant care that she should not receive a lifesaving procedure. In my opinion there is no choice... no decision for anybody to make! We all give our children constant care, granted they are at many different levels and Amelia's would be extremely high, but it is done by us none the less. It is our job, our duty as parents and for most of us our passion! It is not for a doctor to tell us that it's not worth it. No one should have to power to decide that someone's intellectual abilities make them more valuable than anyone else! When will it be taken a step further? When will someone be told that because their IQ is "only" 100 a different candidate, who's IQ happens to be 120, will receive the transplant first. Or perhaps it will effect a child who is awaiting adoption or in foster care with no permanent guardians, after all it's about who will take care of them, right?
Although hospitals try to get away with barbaric discriminating acts such as these there are people fighting for the families. The Convention on the Rights of Persons with Disabilities has specific rights in place and the refusal of treatment for Amelia is in breach of many. The CRPD is in place to prevent and remedy offenses such as this and I have no doubt if this is forced to go to court CHOP's will lose. Even so, the real point is that there shouldn't be a fight in the first place... the articles set forth by the UN through the CRPD are there for a reason for Christ's sake!
Obviously this is outrageous but what can we do to help... in the immediate this is a good start.
follow the above links and sign the petitions! support the Riveras!
Long term... hug your babies extra tight and teach them. Teach them that everyone is equal, everyone is valuable, and everyone is different! No one is "worth" more than another. People with disabilities are real people with many things to offer.
Teach them compassion.
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