Belated But Essential Steps to Respect

When the people we entrust with our health and wellbeing use the term "retarded," they grant legitimacy to a word that has been deemed offensive by the culture at large. They cause harm to the very people they have pledged to heal.
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love couple with down syndrome
love couple with down syndrome

In late October, Matt Holder, of the American Academy of Developmental Medicine and Dentistry (AADMD_ and Janet Froetscher, President and CEO of the Special Olympics issued an "urgent" letter to their colleagues urging doctors, dentists, nurses, and other health professionals and students to stop using the word "'retard' and its various forms (e.g., retarded, retardation) with patients and in all other circumstances, such as consultations, presentations, classroom and beside teaching, Grand Rounds, medical records, and journal articles and other publications." It includes a link to a page on the AADMD website that lists "steps to respect."

A part of me is gratified by this action. As the parent of a child with Down syndrome, I hate to think of such outdated and insulting terms being used in a clinical setting. But another part of me was left asking: "really?" Why the sudden sense of urgency? I'm dismayed that the authors still think there is need for a letter like this. Why are doctors--who should be on the front lines in caring for the physical and psychological needs of their patients--so late in coming to the table?

At one time, the "R-word" -- as it has come to be known by people who would once have been branded with the term -- was seen as a neutral description, a welcome substitute to terms like "cretin," "idiot," and "feebleminded" used by doctors, scientists, superintendents, and other professionals to categorize those we now call people with intellectual disabilities. But that was long ago.

Today, "retard" is an insult kids shout at each other on the school yard. It means someone is slow, clumsy, and incredibly stupid. It's a word that gets bandied about on TV (it regularly peppers the prison-speak in episodes of Orange is the New Black, for example), and in comic films like Ben Stiller's Tropic Thunder. When Rahm Emmanuel was White House press secretary, he referred to an opponent's ad campaign as "fucking retarded." In 2012, Ann Coulter tweeted, "I highly approve of Romney's decision to be kind and gentle to the retard" following a Presidential debate with Barack Obama. Although the term is still in use, most people would probably agree that it is hurtful and offensive. Lady Gaga, Lebron James, Kirstie Alley and other celebrities have publicly apologized after being called out for using it in interviews and tweets.

Their awareness is the result of decades of campaigning. In 1991, ARC, the world's largest community based organization of and for people with intellectual and developmental disabilities, changed its name from Association of Retarded Citizens to "the Arc" in recognition of the term's insulting connotations. The Special Olympics began its "campaign to end the R-word" in 2004. In 2010, the actor John C. McGinley (father of a son with Down syndrome) enlisted in the "Spread the Word to End the Word Campaign." In 2010, Rosa's law removed the terms "mental retardation" and "mentally retarded" from federal health, education and labor policy and replaced them with people first language "individual with an intellectual disability" and "intellectual disability." Even the Supreme Court got on board earlier this year, when it used the term "intellectual disability" for the first time in the Hall v. Florida decision.

"The word retard is considered hate speech because it offends people with intellectual and developmental disabilities as well as the people that care for and support them," says Karleigh Jones, a Special Olympics athlete from New Zealand. "It alienates and excludes them. It also emphasizes the negative stereotypes surrounding people with intellectual and developmental disabilities; the common belief that people with intellectual and developmental disabilities should be segregated, hidden away from society, which, in my opinion, is really old fashioned."

To be fair, many doctors are not so old-fashioned. Of the various kind and professional doctors who have treated my son, none has ever said the word. A search of my campus library catalogue reveals a sharp decline in the words "retarded" and "mental retardation" in medical literature of the past decade. Still, when I gave a lecture to obstetrical residents at a major New York hospital this fall, they were incredulous when I said I found the term offensive. When doctors use such language, they explained, they are an objective description of a patient's cognitive abilities and potential. Despite my insistence that those words carry a history that makes it impossible to use them without bias, most of the residents seemed unconvinced.

"Does it really matter?" they asked. Why not just tell it like it is? Regardless of terminology, aren't doctors just describing a person with a low IQ? And would that person be any different if another word were used? Isn't this a bit like offering aspirin to a patient with ebola?

Well, no. (And don't get me started on the reliability of IQ tests.) As the letter from Holder and Froetscher suggests, it matters very much whether healthcare providers describe a person as "mentally retarded" or "intellectually disabled." Terminology can make a real difference in how that person is treated and their potential understood. In the case of Down syndrome, there is even more at stake. As increasing numbers of women undergo prenatal genetic testing, they will grapple with what to do if they receive positive results (indicating Down syndrome or another genetic disability). Research has shown that how a diagnosis of Down syndrome is described has a significant impact on women's decisions about whether to keep or terminate otherwise wanted pregnancies. It means something quite different to say that a potential child will experience "developmental delays" than that they will be "mentally retarded."

When the people we entrust with our health and wellbeing use the term "retarded," they grant legitimacy to a word that has been deemed offensive by the culture at large. They cause harm to the very people they have pledged to heal. I appreciate Holder and Froetscher's letter at the same time I wish it didn't have to be written. The best explanation I know for its importance is the one offered by Joseph Franklin Stephens, a Special Olympics Athlete and Global Messenger from Virginia, who wrote in response to Ann Coulter, "What's wrong with "retard"? I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the "in" group. We are someone that is not your kind. I want you to know that it hurts to be left out here, alone."

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