It was a muggy July day when my family piled into the car to make a grocery run and take care of some errands in town. My sixteen-year-old brother, AJ, grumbled when I sat too close to him in the car, so naturally I had to tease him for being so grumpy. Our mom sighed and told us both to cut it out.
“Jenna, he’s just bored with summer. You know how much he hates having nothing to do, and he misses his friends,” she said to me.
“And he misses his girlfriend. Apparently he’s a real hit with the ladies at school,” our dad quipped in.
By this point AJ was firmly ignoring all of us, staring out the window and sulking as teenagers do.
I’m sure many of you who have siblings also have an abundance of similar stories. As the oldest sibling, you get dibs on poking fun at your little rascal and, in turn, you exercise fierce protection over them should someone outside of your family dare to make your little brother or sister feel small.
AJ is without a doubt the most loving and caring person I know. He has a big personality full of joy and laughter and he truly appreciates the simplest things—like helping our dad complete a woodworking project on our family’s farm. He is athletic and artistic and takes pride in his drawings and sketches. But AJ’s also a little bit different. He has Downs Syndrome.
For most, the fear of their younger sibling being bullied fades with time. Once they’ve found their group of friends in high school, they breathe a sigh of relief knowing that from here on out it’s mostly smooth sailing.
But not all of us are afforded the luxury of having peace of mind. This is something I (and every one who has a brother or sister with a disability) am reminded of every single time I hear someone use the r-word: retarded.
The r-word was originally coined as clinical medical terminology to explain developmental delays, intellectual disability, and impeded function of the brain as a result of brain damage or conditions onset by improper cell division in utero. But in contemporary culture and society, the word is used derogatorily and derisively. It is used as a synonym for ‘dumb’ and ‘stupid’. This kind of use of the word, as the Spread the Word to End the Word campaign articulates, “only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity.”
This word is one of the most widely used and accepted forms of hate speech. Its very use impedes social progress because it equates those who are living with disabilities or handicaps as sub-human and undeserving of respect and common courtesy. Regardless of whether or not it is directed toward someone with special needs, these ugly connotations attached to the r-word make its use incredibly offensive to members of the special needs community and those of us with friends or family who are living with a disability.
Almost everyday, I hear the r-word used freely as a slur by children, peers, and even middle-aged adults. It makes me feel both angry and sick to my stomach. I feel angry because its usage is one of the most derogatory ways to convey regard for someone or something as inadequate, useless, and lacking intelligence. My anger extends to the fact that it is used so freely and permissively in ignorance, which leads many people to see nothing wrong with it.
Then I feel sick thinking of my greatest fear: a group of children or adults directing that word at my brother, AJ. I think of them pointing and laughing. I think of him not understanding, as they laugh harder when he starts to smile too because he genuinely loves seeing others enjoying themselves and being happy. Then I feel scared because I don’t know if that has ever happened to him, and I don’t want to imagine that it has. I wonder what may have transpired in junior high and high school in the minutes that he didn’t have his teachers or teaching assistants with him. I know that no matter how much I love him all of my love can’t protect him from the ugly side of humanity.
This tumultuous cycle of emotions is not unique to just me. My best friend and sorority sister, Erin Williamson, has a 16-year-old sister named Amy, who has Downs Syndrome as well. Having heard all about her, I was excited to meet Amy just a few months ago. When I did, I knew she was without a doubt the most clever, witty, and self-aware young woman I’d ever met. She’s also a distinguished track star and pianist.
Once, when talking about our siblings, Erin stopped and said, “I know she’s a much better person than I could ever hope to be.” Like me, Erin is continually amazed by her sibling’s strengths and the incredible adult she is growing into.
“I know that Amy will be able to accomplish anything she sets her mind to. I want her to live a life that she deems is fulfilled. If that means falling in love, then I hope she does. Amy is extremely empathetic; she will stand up for anyone that’s being hurt. When I say anyone, I mean one time she [even] defended a kid that was bullying her, because he was being bullied, himself. I don’t know anyone else that would do something like that,” Erin said.
Regardless, Erin echoes similar fears as mine for her sister, and intolerance for the usage of the r-word.
“I hope she continues to say, ‘I have Downs Syndrome, I am not Downs Syndrome’ She and I know it doesn’t’t define her. I fear that ignorant people will try to stand in her way. When I hear the word ‘retarded’ used as common slang, I’m appalled. I get mad at how ignorant and uncaring that person is … and then I feel sorry for them. I feel sorry that they will never know how fantastic those individuals are that they use as jokes. I’ve found people with disabilities to be some of the kindest people, and to have the most inspirational accomplishments. They are not their disability,” she said firmly.
Erin and I, along with thousands of other advocates for this special community of men, women, and children alike, hope to see this attitude of passivity change. The r-word doesn’t define either AJ or Amy. Their abilities, and accomplishments, along with their love and their contagious laughter define them in ways that a word never will.
It takes courage to explain the significance of the r-word to those who either don’t know or are willfully ignorant of its implications. It also takes courage for those who do use it to take a step back and see that it’s wrong. The key to changing the attitude around using the word ‘retarded’ is to educate others on why it matters with courage, fortitude, and respect. Even if the only person you educate is yourself, it’s one less person living in the dark. That alone adds one more voice to our movement of eradicating the r-word for good.
Happy Holidays, from me and AJ to you. In exchange for your time, I hope we’ve given you reason to think before you speak and to encourage your friends to do the same.