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Matthew Holder

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A Word Can Be a Matter of Life and Death

Posted: 03/05/2013 9:51 am

Denying a life-saving kidney transplant to a child is not something that we accept as Americans. We go through great lengths to protect our children, and take extraordinary measures to help a child facing a life or death situation. This is part of our value system.

But values can be fragile things. Sometimes when we are not paying attention they can be undermined. Sometimes they can be unintentionally compromised by something as simple as a single word. Early last year, when she was three years old, Amelia Rivera needed such life-saving transplant, but doctors gave Amelia and her parents bad news -- she would not be considered for the operation.

This is where the power of a single word becomes so important. Amelia's mother, Chrissy, recounts the conversation with the doctor in January of 2012 in a blog post. As the doctor began to explain that Amelia would be denied the chance for a transplant, Chrissy recalls noticing highlights on the doctor's notes -- the phrase "mentally retarded" was peppered throughout Amelia's paperwork. Retarded, the R-word.

The ensuing conversation led to a pointed question, "This phrase. This word. This is why she can't have the transplant done?"

Followed by the crushing response, "Yes."

Medical decisions are always complex. And yet Amelia's hope for a kidney transplant was not denied for any scientific reason, it was denied because of the power of a single word, the R-word, and all of the connotations it carried with it in regard to creating arbitrary perceptions of what defines "quality of life."

Fortunately, doctors eventually reversed the decision and granted her the operation, but only after her family fought back and support for Amelia from people all over the world flooded the hospital where she was being treated. Now, Amelia is doing well and will get her new kidney this spring.

In the historical context, the medical profession has made great strides in treating people with disabilities. A century ago, the technical term for a child like Amelia would have been "imbecile" and even without a kidney issue, she would have almost certainly died in early childhood. Fifty years ago, health professionals would have institutionalized and likely sterilized her in a misguided attempt to prevent her from passing on her "feeble-mindedness."

Today, people with intellectual disabilities live in the community and well into adulthood, but as Amelia shows us, they are still not treated like everyone else. Even when the issue is not immediately life-threatening like organ failure, they face dramatic discrimination in access to medical services leading to poorer health, diminished lives and premature death.

Special Olympics maintains the largest database of health information for people with intellectual disabilities, and the numbers are staggering. More than 70 percent of its adult athletes are overweight or obese; 35 percent need new glasses; 30 percent can't pass a hearing test; and 24 percent have untreated tooth decay. The medical establishment is failing these patients, and despite our historical progress, the fight for equality continues.

March 6 is a critical battle in that fight with a concentrated effort on two fronts being spearheaded by the Special Olympics movement. During its annual Capitol Hill Day, athletes and others from 41 states will meet with member of Congress to ask for continued funding for Special Olympics' health and other programs. And, at simultaneous events around the country, students and others will hold rallies for Spread the Word to End the Word Day, the annual push to discourage use of the R-word.

As head of the American Academy of Developmental Medicine and Dentistry, I have been honored to join Special Olympics for years as its staff, volunteers, families, and supporters has worked tirelessly to push for policy changes. We have had some critical recent steps in the right direction.

  • At its annual meeting in 2012, the American Medical Association agreed to stop using the term "mental retardation" in its policies -- and at the same time, supported a process for government agencies to designate individuals with intellectual disabilities as a medically underserved population.
  • Just a couple weeks ago, The Social Security Administration announced its intention to make the same language change.
  • In May 2013, the American Psychiatric Association will publish the new DSM-5 (Diagnostic and Statistical Manual -- 5th edition). In it, the diagnosis of mental retardation is revised to intellectual disability (intellectual developmental disorder).

No one believes that if the R-word vanished, access to the best health care will suddenly appear and the medical problems faced by people with intellectual disabilities magically fixed, but language affects attitudes, and attitudes affect action. If health care professionals looked at the person first rather than the disability, there would be no questions whether that patient should receive an organ transplant, proper instruction on nutrition, or complete dental care. Some would argue that it is only a word or only a clinical designation, but equality in health won't come while we are still categorizing people in derogatory terms and using that as the basis for unequal care.

That is why words matter.

Amelia's mother Chrissy says it best. "To our family, [the R-word] was the equivalent of a death sentence, and all of us hope it can be erased from society."

 
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