Dignity Now

A young woman named Amelia was recently denied the opportunity to get on a waiting list for a kidney transplant because, according to the Nephrology Department at Children’s Hospital of Philadelphia, she is “mentally retarted”. The hospital deemed  Amelia unworthy of this critical health-care procedure, based on their pre-conceived notions about her “quality-of-life” as well as “her mental delays”. The hospital even went so far as to say they would not even perform the transplant if Amelia’s family came up with a donor. They simply will not perform the procedure no matter what, essentially choosing to let Amelia… um… well let’s just say that Amelia’s mother says that the young girl’s future depends on this transplant.

This is discrimination of the highest order. Special Olympics Chairman and CEO Tim Shriver calls it a matter of “life and death”. We’ve been through this before, but let’s go through a few things again…

  • People with intellectual disabilies deserve every  right that “typical” people enjoy, including access to health care.
  • A disabiltiy does not define an individual’s “quality-of-life”.
  • A person with an intellectual disabiltiy is a person first! Any medical diagnosis is just a part of the overall picture of who that person is.

Those of us who work in this field, as well as family members of people with disabilities, and franlkly most people alive in the United States in 2012 have met countless individuals with intellectual disabilities who have contributed greatly to society and made the world an infinitely better place. We have also met some people with disabilities who have a poor quality of life. Just like we have met some people without disabilities who have made great societal contributions and some people without disabilities who have a poor quality of life. A person’s disability is not what defines her quality of life or worthiness to live her life.

Being refused medical care because of an intellectual diability is no different than being refused for one’s religion, or sexual orientation, or the color of one’s skin. It is an issue of basic human rights. It is up to all of us to speak up when we encounter instances like these. We cannot afford to remain silent.

For more information on this particular situation, please visit Amelia’s mother’s blog post.


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