The R Word

By: Jada Gordon

Illustrations By: Katie Herchenroeder

 

My uncle Kenny has rightfully assumed the role of an old man at sixty-one. He’s moody, unbothered, and only comes out of his room when he wants to eat. He’s humorous in his actions, like when he snatches my mom’s glasses off of her face runs off with a mischievous childlike laugh erupting through the halls. I can’t help but match his ear to ear grin when he seldom flashes it. I feel like I know what flows through his thoughts when I visit him, but I will never know.

My uncle Kenny has been developmentally disabled since birth.

He’s lived in group homes and institutions his entire life. He spoke as a child, however, he barely speaks now. He says the word “Papa” with a melodic, jovial nature that renders me filled with joy. My mom, aunt, and uncle Alfred say “Papa” to my uncle Kenny and his face lights up. I see the memories come back, the familiarity is there, and he lets his smile dominate his face. My uncle Alfred puts on the song “Duke of Earl” and sings along to the melody in a goading manner. Uncle Kenny tends to lose all sense of time and space.

He smiles, laughs, and sometimes bounces up and down on the couch. I’m in a space communicating differently, being absorbed by his energy and mannerisms. This is what he knows and what I’ve adapted to. I see the power of words take effect in these moments.

My uncle Kenny is the reason why the word “retarded” is not utilized in my vocabulary.

As a child, I never understood how this word could hurt, given that just about everyone used “retarded” so casually. Along with the phrase “that’s so gay,” “retarded” was the word that circulated around my peers’ mouths, demeaning people for lack of knowledge and/or intellect. Although I would see my uncle Kenny when I would spend time with my grandmother on warm spring days, summers, and the visits to the group home, for some reason it never registered to me how “retarded” would disrespect people who truly are developmentally challenged.

We giggled, we laughed, we taunted but never understood its capacity. Words have power but understanding that power is a different story. As a kid, I was put into a different environment with uncle Kenny and his fellow roommates. I had to understand how people who couldn’t communicate in ways I could. Building trust and a rapport were essential. For uncle Kenny, who can’t speak and communicate effectively, he still has a brain, feelings, and voice that can’t be silenced.

So the word “retarded” is a word I find to be damaging and demeaning to his process and his story.

Additionally, it helps to say that he did not have to be developmentally challenged. He was brought into this world in an unfair and cruel manner. As my grandmother was in the midst of labor, she was supposed to have a cesarean section performed. However, sixty-one years ago, a woman had to have her husband’s permission to do so. The hospital could not reach my grandfather in time, so the nurses forcefully made my grandmother give birth to my uncle Kenny.

Upon his arrival, he was deprived of oxygen for twelve minutes.

This rendered him severely mentally disabled. When I was told this story, I was shocked – to say the least. I was shocked by the medical malpractice of the staff at this hospital. How could a hospital go on with doing this to someone? I was disgusted by the sexist rule of having to ask my grandfather’s permission to perform a medically obligated procedure to preserve my uncles’ safe arrival into the world.

In addition, knowing that black women are more prone to death via childbirth than any other woman of color and white women was what made me furthermore furious. The blatant disregard for my grandmother and her child were evident. Thinking of what uncle Kenny’s life could’ve been is what makes it painful.

At the age of five, uncle Kenny was sent to the now infamous Willowbrook State School in Staten Island. Willowbrook State School was once described by Sen. Robert Kennedy as a “snake pit” due to their conditions and questionable medical practices and experiments. Willowbrook opened as a state-supported institution for the intellectually disabled in 1947 but was eventually closed in 1987. Willowbrook was supposed to hold a capacity of four thousand children but expanded to six thousand children by 1965. Willowbrook had a hepatitis A outbreak throughout its first decade of operation.

The medical staff consulted with medical researchers Saul Krugman and Robert W. McCollum about the outbreak. Krugman found that ninety percent of the children contracted hepatitis A upon their arrival. To discover the ins and outs of the hepatitis virus, which were unknown at the time, Krugman decided to use the children of Willowbrook as experimental subjects to answer these questions. He fed them live hepatitis and watched the effects it had. These tests were called “The Willowbrook Studies” and were considered to be “the most unethical medical experiments ever performed on children in the United States,” according to vaccinologist Maurice Hilleman.

Eventually, the hepatitis study had been discontinued; yet reports still flooded in of children living in squalor and horrible conditions in an overcrowded facility. The school was seen as a warehouse for mentally disabled people in New York City. Children were neglected and abused severely for years. My uncle Kenny would reportedly go into emotional fits when my family was about to leave during their visits.

I could only imagine what he went through when the family left.

I think about all those other thousands of children who never got visits from their families. Who was there to love and teach them? Although it may be harder to teach and communicate, those kids were and still are worth it. Uncle Kenny was lucky in that regard, he had family around him to let him know that he’ll be okay and teach him right from wrong.

Watching my family – specifically my grandmother –  around uncle Kenny is a delight. They don’t treat him as if he were mentally disabled. The joy surrounding him is so warm even he doesn’t realize it. However, when he does, the joy is reciprocated in abundance. He knows our faces and our voices.

He is not helpless or worthless and never should have been treated as such. The word “retarded” writes him off as if he is just that.

I like the word “special” much more than “retarded” simply because we’re all special, we’re all different. We all communicate and discover the world and all it has offer differently. Now that I’m older and understand the trials and tribulations of what an actual mentally disabled family member went through, “retarded” is a word I won’t use to ever describe another person, their intellect, or their lack of knowledge on something.

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