A New York Times article by Dan Barry and Sonia A. Rao touched a nerve in me. The on-line article, published on 26 January, is titled “The ‘R-Word’ Returns, Dismaying Those Who Fought to Oust It.” The piece was republished on 29 January in the print edition under the title “Spewed by the Powerful, a Slur Over Disabilities Has a Revival.”
There are things that I avoid discussing publicly. Those closest to me understand that I live behind a wall, or as I prefer to call it, a no-fly zone of approximately five feet. This shouldn’t be interpreted to mean I am unfriendly, uncaring, or disengaged. This means I am cautious about what I reveal about myself. I am an observer, taking in, and for all the candor, bluntness, keeping much to myself. So imagine my surprise when, after reading the article, my wife said, “You should write about your experience with the R-Word.”
I have read and re-read Barry and Rao’s article, thinking about the people whom society has deemed intellectually disabled and marginalized who have touched my life. There was Ruby, a young girl who participated in an educational program in urban Paterson, New Jersey, from 1969 to the 1970s. Ruby clung to me. After one of the classes, she gave me a sketch. I still have it. And, among others, there was Tommy.
I met Tommy at a communal prayer service. While I was praying, Tommy approached to ask if he could pray with me. He was kindhearted, gentle, though at times frustrated. He liked sports and collected metal toy cars (Hot Wheels). Besides having an intellectual disability, Tommy had serious health issues.
One day, I received a telephone call from his mother. Tommy was in the hospital. He was dying. “Would you come to see him?” The short version is that to give his parents a chance to rest, I sat with him from 9 in the evening until 6 or 7 in the morning, on some days a bit longer.
Tommy and I spent part of our evenings conversing, and of course, there were my feeble efforts to keep him comfortable when he became agitated or restless, encouraging him to sleep. In the mornings, as I prepared to leave, Tommy insisted I accept one of his football cards or a Hot Wheel. These gifts are on a bookshelf in my office.
Then came the telephone call from his father. Tommy was approaching the end of his struggle. I rushed to the hospital. His father was waiting for me in the hallway. Along with Tommy’s friends and nurses, we gathered around Tommy’s bed. A few minutes later, Tommy passed. “He was waiting for you to be here,” his mother told me.
The formal name for intellectual disability, according to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, fifth edition text revision (DSM-5-TR), is “intellectual developmental disorder.” This condition is often misunderstood, as the Cleveland Clinic website observes:
A common misconception is that intellectual disability is just a limitation on intelligence as assessed by a simple IQ test. An IQ test is only one piece of information. Some people have an average or above-average IQ but have trouble with other abilities necessary for everyday life. Other people have lower-than-average IQs but also have skills and abilities that are strong enough that they don’t meet the criteria for intellectual disability, or they meet criteria for a milder form of intellectual disability than an IQ test indicates.
The R-word (retarded) was often applied to me by teachers, classmates, and relatives. I was often mocked and humiliated both in private and in public. I had (and still have) a speech impediment that was exacerbated by periods of deafness from severe ear infections, and I was often ill. I was a slow reader, struggled with problem-solving, planning, and focus. These symptoms, which I still have to cope with, as noted by the Cleveland Clinic, go “beyond the traditional language and math skills an IQ test measures.”
The disparaging comments expressed (and continue to be made) to my face and behind my back left scars that I carry to this day. Like many others with intellectual disabilities, I live with a sense of being the “odd one out.” I am amused and baffled by those who refer to me as an intellectual, on one hand, and those who apply the R-word on the other. I often feel as if I am in an elliptical orbit around two planets, though at other times I feel as if I am in a parabolic orbit into infinity.
I was and remain fortunate to have people who took the time to see past my intellectual disabilities and behavioral misconduct these caused. Ellen McKenna, a neighbor who presented me with a thesaurus and encouraged me to write so I could express myself. Vera Austin, an educator and close family friend, created a game to develop math skills. Joe Maziel, a high school social studies teacher, had me retake an IQ test, then spent hours working with me after school. Bill Woods, the high school vice-principal, John Ianacone, Anne Peters, and Roger Hartley, high school teachers, took me under their wing to develop and refine my skills.
A 2023 population study by Keun Lee, Marco Cascella, and Raman Marwaha has established that “The prevalence of intellectual disability in developing countries is estimated to range from 10 to 15 per 1000 children; of those, about 85% have a mild intellectual disability. From 1 to 3% of the Western population is estimated to have an intellectual disability. Incidence is challenging to calculate accurately as mild disabilities may be under-recognized until later in childhood. Intellectual disability is reported to peak at the ages of 10 to 14 years and is 1.5 times more prevalent in males than females.”
The pain that those of us who live with intellectual disabilities, regardless of its form, suffer is exacerbated in the current political climate. The R-word is readily bantered about by podcasters, social influencers, students, business leaders and staff, rock musicians, white nationalists, and members of the Trump administration. They use the term to enhance their own false sense of superiority, to deny others their human dignity. In their rhetoric, their disparaging comments, those who denigrate people with intellectual disabilities reveal to us their moral and spiritual disability.
This is a human rights issue that should concern all of us. Let us treat and speak to others with the same dignity we want to receive. Let us recognize our common humanity with those who live with intellectual disabilities.
Below are links to resources for information and assistance.
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Sources:
National Library of Medicine
Intellectual Disability: https://www.ncbi.nlm.nih.gov/books/NBK547654/
Available Information and Assistance:
The Arc of the United States: https://thearc.org/
The Arc of Ontario: https://www.thearcontario.org/
Center for Parent Information and Resources
The Clevland Clinic:
https://my.clevelandclinic.org/health/diseases/25015-intellectual-disability-id
Each State and Canadian Province has resources for providing information and resources.
Image: The Intent of Earth, the Claim of Heaven © 2025 Charles van Heck
Charles van Heck's Woodhull Journal 
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