Rosa’s Law Ten Years Later: The Road to End the R-Word

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Content warning for ableism, discussion of eugenics and forced sterilization, and uncensored use of the r-word. On October 5th 2010, President Barack Obama signed Rosa’s Law, which changed the medical usage of the r-word (“medical retardation”) to “intellectual disability”...

Image description: Black bold text that says, “R-WORD” with a red no sign crossing it out with a white background. October 5th, 2020 is the ten year anniversary of the passage of Rosa’s Law, which ended the medical usage of the r-word from U.S. legislation.

Content warning for ableism, discussion of eugenics and forced sterilization, and uncensored use of the r-word.

On October 5th 2010, President Barack Obama signed Rosa’s Law, which changed the medical usage of the r-word (“medical retardation”) to “intellectual disability” in U.S. legislation. The use of the r-word was removed from federal health, education, and labor policy in the United States. Rosa’s Law was inspired by Rosa Marcellino, who is now a nineteen-year-old young adult with Down Syndrome, and was just nine years old at the time of passage of the law. The diagnostic term, “medical retardation” was Rosa’s IEP category for eligibility, and she and her family worked to have this term officially removed from the health and education code in her home state of Maryland, and throughout the United States. The term, “intellectual disability” was adopted in the DSM-5 in 2013, largely due to Rosa’s Law. The campaign to end the usage of the r-word in school IEPs, in hospitals, and in the common vocabulary started in 2009 with the “Spread the Word to End the Word” campaign, in which over 1,000,000 people signed a pledge to end the R-word. The campaign is now branded as “Spread the Word: Inclusion,” which focuses more on the broader need to include people with intellectual disabilities in all aspects of life, and especially in decisions involving them. 

Today (October 5th, 2020) marks the ten year anniversary of the passage of Rosa’s Law. While the r-word is largely eliminated from our medical usage, unfortunately, the r-word remains in our vocabulary, and most commonly is used as an insult. Today, the r-word is often used to describe inadequacy or incompetence, especially in regard to a person, an event, or an occurrence. Ableist slurs such as the r-word and other slurs like, “moron,”  and “imbecile” that were historically used as basis for eugenics and forced sterilizations, as well as forced institutionalization, continue to harm and stigmatize people with intellectual disabilities today. The r-word is also used to insult and demean other neurodivergent and disabled people including autistic people, people with ADHD and Tourette’s syndrome, people with physical disabilities such as epilepsy, people with mental health disabilities, and people who are nonspeaking. It is used online in crude Internet memes, but also publicly in informal, everyday use: “I made a r——ed mistake.” “That was so r—–ed.” It is also used to insult public figures and politicians, such as the current presidential candidates, Joe Biden and Donald Trump. People on the right call Democrats “libtards,” people on the left call Trump and his policies “idiotic” and “r—–ed.” As much as I am against Donald Trump and his hateful and ignorant rhetoric towards many marginalized groups including disability communities, using ableist words to insult him back does not hurt Trump, it hurts disabled people who are most impacted by these words.

The word, “retard” dates back to 1426, and stems from the Latin verb, “retardare” which translates as, “to hinder” or “make slow.” The English usage of this word has a similar meaning, slow and delayed. The medical use of the word, “retard” was first used with regard to IQ scores in the 1900’s as a substitute for other words, such as “idiot,” “imbecile” and “moron.” The word, “idiot” was used for IQ scores 0-25 and in the journal, “Backward and Feeble Minded Children” published in 1912, is described as, “Those so defective that the mental development never exceeds that or a normal child of about two years.” The word, “imbecile” was used for IQ scores of 26-50, and the clinical description of “imbecile” is, “Those whose development is higher than that of an idiot, but whose intelligence does not exceed that of a normal child of about seven years.” The word, “moron” was used for IQ scores of 51-75 and was clinically described in the “Backward and Feeble Minded” journal as, “Those whose mental development is above that of an imbecile, but does not exceed that of a normal child of about twelve years.” These descriptions, rooted in the ableist mental age concept, dehumanized individuals with intellectual disabilities for decades since the early 1900’s. The adjective, “retarded” appeared in a clinical context in journals, such as a quote from a pediatric journal in 1909, “Then there are the ‘backwards,’ or the retards for their years, and those subnormally endowed in respect to mental gifts….” The clinical terms of, “idiot” “imbecile” and “moron” were eventually retracted due to negative public sentiment, and were replaced with the not-at-all-better descriptions of “mild,” “moderate” “severe” and “profound” mental retardation.

The r-slur and similar slurs were born out of the fear of disabled people “overbreeding” and “threatening the quality of the U.S. race.” In an effort to keep disabled people out of America, the first major federal immigration law, the Act of 1882, prohibited entry to any ‘lunatic, idiot, or any person unable to take care of himself or herself without becoming a public charge.’ This exclusion was tightened in 1907 to add “imbeciles” and “feeble minded persons” to people who were automatically excluded, and inspectors were instructed to detect “any mental abnormality whatsoever.” The Commissioner General of Immigration reported in 1907: “The exclusion from this country of the morally, mentally and physically deficient is the principal object to be accomplished by the immigration laws.” Following a diagnosis of “idiot” “imbecile” and “moron,” people with intellectual disabilities were forcibly sterilized due to the sterilization laws that were introduced in many American states to stop people with intellectual disabilities from having children. American based scientists, such as Alexis Carrel, believed that the US Constitution that granted equality to all people was an “error” and wanted to force disabled people to forced sterilization or death. He wrote in his book, Man, the Unknown, that, “The feeble-minded and the man of genius should not be equal before the law. The stupid, the unintelligent, those who are dispersed, incapable of attention, of effort, have no right to a higher education.” Carrel’s book sold more than two million copies and he even won a Nobel Prize.

Forced sterilization was upheld in the U.S. Supreme Court in 1927 in the case, Buck v. Bell, which focused on a woman with an intellectual disability named, Carrie Buck, who the state of Virginia wished to sterilize, claiming that her “feebleminded” genetic traits would be passed to her offspring. Carrie was raped by a relative of her foster family, and she was institutionalized by her family to cover up the rape. The court rejected Buck’s argument that involuntary sterilization was “cruel and unusual punishment” and violated the Eighth Amendment, and Chief Justice Oliver Wendell Holmes wrote that, “Three generations of imbeciles are enough” when explaining the court’s decision. This ruling, which has never been officially repealed by the Supreme Court even today, led to many more decades of women with intellectual disabilities being abused and forcibly sterilized in the United States.

By 1938, 33 American states permitted the forced sterilization of women with intellectual and learning disabilities, and 60,000 Americans underwent sterilization until the 1970’s. Laws also restricted the right of certain disabled individuals to marry. An article published in the journal of the American Psychiatric Association in 1942 called for the killing of all “retarded” children over five years old. When the Nazis introduced their own sterilization laws, such as their 1933 Law for the Prevention of Progeny With Hereditary Disease, they used United States sterilization laws for the blueprint of their own. After World War II, the Nuremburg court did not order reparations to be paid to families of disabled people killed by Nazis, and forced sterilizations of disabled people were not seen as war crimes. German doctors accused of murdering disabled people justified their actions by pointing to other countries, including America, that had forced sterilization laws in place.

In 1954, Frank Rooney’s novel, “The Courts of Memory” was one of the first popular non-medical uses of the r-word as an insult: “God, you’re simple, Dick…you’ve got an IQ about equal to a squirrel’s. You’re retarded, do you hear me?” Since then, “mental retardation” had a double use as a general insult, and as a clinical diagnosis given to people with intellectual disabilities. The diagnosis of “mental retardation” was used to grant or deny accessibility rights, used to justify sterilization of women with intellectual disabilities, and used to force people with intellectual disabilities to be institutionalized against their will. 

Because the r-word is still heavily used in informal conversation and in pop culture, some people have made arguments for reclaiming the slur, saying that if we cannot get rid of the slur entirely, perhaps it can be reclaimed for empowerment instead, such as how the words, “crip” and “cripple” have been reclaimed by advocates with physical disabilities. I am highly against this idea for the same reason that I as an autistic person am against reclaiming the ableist and offensive puzzle piece symbol for “autism awareness,” which is that its history is so historically dark and tainted by people outside disability communities, and specifically outside of intellectual disability, nonspeaking, and neurodivergent communities that are most affected by the use of the r-slur. The original meaning of the r-word is “to hinder” or “to make slow,” and reclaiming the word does not change its original meaning and origins. Since the r-slur has not been completely eliminated from the mainstream vocabularies of the general public, it is still widely used to bully and ostracize people with intellectual disabilities.

Reclamation of the r-slur would also be very unequal among disability communities. Not everyone would have the same ability to reclaim this slur, and the same word that one person may use as “empowerment” may cause trauma and harm to another. There is still too much institutional power of the r-word that is held by people who are not disabled, and without a wider push of reclamation from a united marginalized community, using the r-word around non-disabled people would reinforce this institutional power rather than strip them of this power, which is required for reclamation of slurs. Lastly, people with intellectual disabilities are leading the charge to end the use of the r-slur, not just from our medical usage, but from our everyday use. There is no good reason in the year 2020 to use the r-slur when the communities that have been the most impacted by its usage have made it clear this word continues to hurt and stigmatize them. 

Growing up as an autistic person, like many in my community, I also have been hurt by the r-word. I have felt pressured to “mask” or hide my stimming to not look so “weird” in front of others. I did not disclose being autistic to anyone and feared being stigmatized and bullied if anyone were to find out. But despite my efforts, I still heard people talk about me at school: “She’s so r—-ded.” “Look at that r—-rd.” “What a f—-ing r—-rd.” Now as an autistic adult and advocate, I still become emotional when I hear that word, because I remember how low I felt when people used that slur against me, and how ashamed I felt when I thought I looked “too autistic” in front of others. 

Today, I will correct someone when I hear them say the r-word. They may either call me “too sensitive,” or apologize and say something along the lines of, “I’m sorry, I meant to say, ‘stupid’” or, “I meant to say, ‘dumb,” and replace one offensive and ableist slur with another. I’m not perfect, and sometimes, internalized ableism gets the better of me and those casually used ableist words enter my vocabulary as well, but with more practice and self-awareness, I have become much better at catching myself and using alternatives for ableist slurs. Removing ableist language is an ongoing process that takes effort, especially for ableist words that seem to be automatic and embedded in our culture. We can all do better by changing not only our language, but our thoughts when speaking to and about individuals with intellectual disabilities. Do not forget the history of the r-slur rooted in eugenics and dehumanization, about the young adult woman with Down Syndrome, Rosa Marcellino who inspired Rosa’s Law, and about the community of neurodivergent and disabled people working to remove the r-slur once and for all.


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