The R Word
Happy World Inclusion Day
Let’s break down the word retarded and dig into its “etymology”
(the study of the origin of words and the way in which their meanings have changed throughout history)
In the mid 1960’s the general terminology of “mentally retarded” was assigned to any person with an intellectual disability. It was a replacement of nomenclature from “feeblemindedness” and “idiocy”. It was also around this time that the term Down syndrome was aptly renamed after English scientist John Langdon Down, who was the first to study the condition in the late 1800’s. Before this, the official medical and social label was, “Mongoloid Idiot”. The World Health Organization requested to abandon the term only because it was causing embarrassment to the people of Mongolia and Greater Asia. Unbelievable.
The official WHO rebranding was not out of respect for people with Ds being labeled by physical description (the shape of their eyes) but rather because the people of Mongolia did not want their name to be associated with people who had Trisomy 21.
“In 1960, the average life expectancy for a person with Down syndrome was 10 years old. Today, it is 60 years old! ”
It cannot be overstated that a diagnosis’ name and official descriptors can directly affect the public association and treatment that go along with a diagnosis. The chromosomes are the same then as they are now. So, what has changed?
The difference can be directly tied to the regard and value of life placed on the person.
(Remember this was also the time that people with intellectual disabilities were routinely institutionalized in places dangerous conditions and abusive environments because of their socially agreed upon worthlessness).
A heart surgeon told a mother in 1980, “Your son is a Mongoloid, your best bet is to leave your baby here and pretend you never had him. He will be nothing but grief and pain to you and his heart defect will kill him.” This excerpt comes from Karen Ellis’ account written in Dr. Nakaidohs book, “Healing Hearts.” This exchange happened at the same hospital where Annie received her open heart surgery in Fort Worth, TX some 41 years prior. It all started by calling an entire group of people “Mongoloid Idiots” – the undesirable references to Down syndrome, and negative attitudes led to a belief that children were undeserving of medical care. The ripple effect of those attitudes is how the life expectancy was 10 years old, and it all started with the name.
I was told by a woman when I was pregnant with Annie that the negative association with the word retarded was overblown. She gave the example of the word “fire retardant” and told me how it is something used to slow the spread of a fire because “all retard means is slow”. I remember trying to not roll my eyes at her (as if I needed an English lesson). Yes, the word retard, by definition, means to slow down. Annie is watching Little Einstein’s as I write this and a character just said “slowly, slowly, ritardando.” Ritardando in music theory means, “a gradual decrease in speed.” Cambridge dictionary now defines the word retarded as, “a word used to describe a person with a learning disability that is now extremely offensive.”
The problem, I would argue, is not the word.
The problem is what we did with the word.
Society equated this word to describe something that is stupid, annoying, and bothersome.
“I didn’t like the movie at all. I thought it was retarded” – adjective, undesirable
“Are you retarded?! Why didn’t you catch that ball!?” – comparing a person’s cognitive or physical error to a person with a learning disability in a derogatory way
“I can’t come to the party because of my mom’s retarded rules”- adjective, stupid or annoying
The commonality shared between all 3 examples of the word is that they evoke negative feelings and/or make fun of something or someone.
To Learn Is To Grow
Each time I hear this word used as a hateful adjective, knowing it’s a word tied to my daughter’s identity, I feel myself go red.
Spencer and I were on a 90’s movie kick last summer and couldn’t help but notice how the word retarded was used in almost every single film. This word was deeply engrained into Hollywood and, by proxy, our homes.
Over the last 3 years raising Annie, I have found that the hardest group of people to speak to about discontinuing the use of this word is my parent’s generation. A majority of people over the age of 50 years old, in my experience, have told me they do not see the harm in using the word by stating something similar to, “it is not a big deal” as some form of a defense. It’s shocking.
I have found that it is easier to convince a terrifying, cooler than anyone, teenager to stop the R word than a grown adult.
Before I began dating Spencer in 2012, I used the R word regularly. I had never even considered its hateful and harmful impact and it is something that I am ashamed of. Spencer also used the word as a teenager (see 90’s childhood) up until he volunteered at a small preschool on our college campus that taught him better -- Kinderfrogs, the same school we send Annie to today. I said the R word soon after we met, and he kindly asked me not to use it and told me the reasons why. I immediately understood. All the time he had spent volunteering with these amazing kids had changed his heart and rid his vocabulary of the word.
We had no idea at the time that we would be Annie’s parents in the near future, glad we learned then!
I asked my dad, Annie’s grandfather, to share a bit about his perspective change and this is what he sent.
“Since Annie has came into our family she has changed many things for us in so many positive ways. She has taught us not to take health for granted, she has brought us closer together as a family and she has made us appreciate and love each other in a way that we had not done so before.
Annie opened my eyes to a lot of things that I was either oblivious and ignorant to, or at least naive in my understanding and acceptance of. In the past I looked upon people with DS as being retarded. Since Annie has been in my life I now understand that DS is not at all what I thought it was and the word retarded should not be associated with DS nor any other birth or mental condition; in fact, it should not be used at all. Including when it is used in jest, it is hurtful and demeaning.
I am ashamed that I was so uneducated and oblivious in the past to so many things r.e. DS and certain words and terminology. Sometimes God educates us, opens our eyes and hearts and changes us for the better by changing something in our lives that at first seems devastating, but ultimately turns out to be a major blessing. To me and my family, Annie is that blessing!”
Relationships and love change everything!
Please stop the use of this word in your vocabulary and teach your children better.
As the take the pledge advocacy group says, “Spread the word, to end the word”
(spreadtheword.global)
