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View Point: Justice Delayed is Justice Denied! Amelia Rivera's story

 

Guest blogger Krista Flint of Inclusive Humanity and a member of CACL's Values and Ethics Task Force provides us with our most recent View Point post, about a little girl named Amelia who is being denied a kidney transplant because she has an intellectual disability.

Life Saving Transplant Denied As Child has Developmental Disability

So much of the work Inclusive Humanity has been engaged in over the last years has been in conjunction with groups and individuals who see how people with disabilities are made vulnerable within the medical community. Groups like the Vulnerable Persons Network in Manitoba, the Euthanasia Prevention Committee in Canada, The Informed Decision Making Task Force out of the US, and the Values and Ethics Committee of the Canadian Association for Community Living are working hard to create broader public discourse on these imperative issues.   It has become abundantly clear-in the thinly veiled language used in Grand Rounds, in the recommendations set out by highly touted medical organizations, and more recently in the exclusion criteria set out by some Regional Health Districts in response to a medical scarcity paradigm relating to the possibility of an H1N1 outbreak-it is open season on people with disabilities.

As recently as 1995 the University of Alberta Hospital in Edmonton was forced to reverse their decision and allow 17 year old Terry Urquart to be placed on the organ transplant waiting list as he required a lung transplant as a life saving surgery. The hospital board of ethics had previously stated that due to the fact that Terry had Down syndrome, his developmental disability made him ineligible for the waiting list.

Once again a North American Hospital has refused to allow life saving transplant surgery, this time in at Children's Hospital of Philadelphia, 2 year old Amelia has been denied the same right. Amelia lives with Wolf-Hirschorn syndrome a genetic condition that often includes developmental disabilities.

The Dr. in charge of Amelia's care has been very clear in his statement on the wisdom of donating organs to "children like Amelia"..."Amelia would not be “eligible” for a transplant even with a family donor because she is “..already brain damaged and mentally retarded.” Rivera recounts a very painful exchange that followed during which she said:

“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED! (from an earlier interivew on care2.com)

Rarely have we seen this kind of overt discrimination and direct violation of the UN Declaration on the Rights of Citizens with Disabilities. I guess we are finally seeing the actualization of what we have long suspected and experienced to be true about the value the general community places on a life with disabilities.

We can no longer afford to bury our collective heads in the sand and dismiss the experience of so many individuals with disabilities and their families in the hospital settings as being the exception to the rule. The time to wage this battle/campaign is now. For I fear if we continue to wait, we will have no one left to fight for. Each of us individually will come under untenable scrutiny as to our worthiness to belong, to be loved, and to be cared for, and ultimately to live.
We have much to learn from the social justice movements that have gone before.

Here is to Martin Luther King Junior Day,

"We know through painful experience that freedom is never voluntarily given by the oppressor; it must be demanded by the oppressed. Frankly I have never yet engaged in a direct action movement that was "well timed," according to the timetable of those who have not suffered unduly from the disease of segregation. For years now I have heard the word "Wait!" It rings in the ear of every Negro with a piercing familiarity. This "wait" has almost always meant "never." We must come to see with the distinguished jurist of yesterday that "justice too long delayed is justice denied."

Martin Luther King Junior

Amelia Rivera's story:

Read Amella'a parent's story about being denied a transplant on wolfhirschhorn.org

Show your support by:

Signing the petition: Allow the kidney transplant Amelia Rivera needs to survive

Or liking the Facebook Page

Note: part of this post also appears on Inclusive Humanity