“Mom, that means he’s pulling my tooth out, yes?”
The dentist went on to say they prefer to use the term wiggle. Tom looked at me and asked again if the dentist was going to pull his tooth out. I again said yes.
Then the dentist went to give Tom a shot of “Silly Juice” which would make his mouth feel “funny.”
“Mom, that’s Novocaine, right? And, my mouth is going to feel numb, right?”
I’m not the dentist’s favorite mom.
I’ve never been comfortable using words that soften things. When my kids ask me a question, I give them the most honest answer that I think they’re able to handle.
My parents did the same for my sisters and me, and I found it less frightening, not more.
I love words. I’m a writer who’s married to a writer. We’ve been teaching our children that words can empower, inspire, and educate. They can also anger, sadden, and hurt people.
Choose your words carefully was a phrase I heard often growing up, and I use it myself with my three children.
So why does the R word bother me so much? The word is used to medically define developmentally delayed people with below-average IQs.
It’s just a word. Right?
Or is it?
I remember clearly the afternoon I sat at my kitchen table listening on the phone while a pediatric neurologist explained the results of my two-year-old daughter’s MRI.
The doctor explained that because of the brain damage that showed up in the MRI, my daughter’s larger-than-average head size, and the shape of her eyes, it was possible that Lizzy could have a very serious genetic disorder.
The doctor told me it was possible that her skills would start to decline and that we should look out for any signs of deterioration.
She was two. She was barely talking. How much more could she degenerate? My heart stopped and our world changed.
All I could think about was children making fun of my sweet daughter.
My own memories of girls being mean to me or kids calling me stupid came flooding back to me. I was a typical girl with dyslexia.
If kids were mean to me, what were they going to do with a child whose disability was so apparent? What were they going to do to my child who didn’t have my gift of being able to communicate?
I still remember the summer I was 12 when my parents sent my younger sister and me to a day camp.
There was a girl with special needs in the 11-year-old group. I knew they were cruel and made fun of her. They treated her like she wasn’t a person.
Was that my daughter’s future?
Retard. Retarded. Retardation. Those words were very much in my mind.
When Lizzy was six weeks old, I was holding and cuddling her. I became alarmed when I realized she wasn’t looking at me the way I thought she should be.
That started a long parade of visits to specialists and therapists to help our daughter have a “normal” life.
But Lizzy’s issues defied conventional diagnosis. She didn’t fit any model or standard disorder. Just when a teacher or therapist was about to throw in the towel with Lizzy and claim her progress had stalled, Lizzy would turn around and do something brilliant. Every specialist was, and still is, confused.
Four MRIs, countless tests, several more specialists, and ten years later, we still don’t have an answer.
Her IQ tests puts her functioning in the level that the R word would pertain to. She has a very hard time communicating. Her voice can sound altered, and kids, understandably, have made comments that she talks funny.
When Lizzy was five, we were touring the school at which she would attend kindergarten. We walked into the classroom of the speech therapist who had a class going on. I helped prompt Lizzy, and soon she was talking a bit to the teacher.
One child commented that her voice sounded very funny. I was about to explain in a friendly and easy to understand way why that was, when a little boy said to the child very excitedly, “but she is talking. Lizzy is talking.”
As I looked at the little boy, I realized that two years earlier he had been in a preschool class with Lizzy for kids with speech difficulties. Lizzy could barely say a word back then.
He remembered her and was so happy that she could talk. He didn’t care what her voice sounded like.
I was most afraid of how children would react to my daughter but have found that children are likely to understand and want to help Lizzy.
Last year, I was at a playground with my kids, and Lizzy ran to another section where some older girls were playing. I was nervous that they would ask Lizzy to move out of their way and she would either not hear, not respond, or just start screaming or saying nonsense words they would surely find strange.
I smiled at the girls as I started to explain Lizzy had some special needs. One girl looked at me and with a smile said, “It’s OK. I know Lizzy from school. I help out her class at gym sometimes.”
“Hi, Lizzy. Do you remember me?”
Lizzy smiled. The girls were very sweet to her and played with her for a bit until we had to leave.
I’m not going to lie and say that I never get frightened about what my daughter’s life will be like. Or say that we have never encountered the occasional narrow-minded person. But for the most part I have been pleasantly surprised at how people have welcomed Lizzy into their lives.
Of course Lizzy is a pretty amazing girl.
Our daughter is a funny, creative person who loves to tell stories. She loves anything pink and feminine and enjoys picking out very cool outfits to wear. She also loves shoes and jewelry.
Whenever we go into New York City, Lizzy loves to stop and look at the store windows. Chanel and Dior outfits are favorites. Jewelry always makes a big impression. Once, she was enthralled with a display featuring diamond-encrusted shoes that took the sting out of having six vials worth of blood drawn.
Her laugh is contagious, and she has two loving brothers who are willing to do almost anything to make her giggle or laugh.
She has amassed a collection of tiaras, hats, purses, and necklaces from so many people that we will soon need a separate room to house the gifts of her many admirers.
Lizzy is a beloved daughter, sister, granddaughter, niece, cousin, student, neighbor and friend.
And that is my problem with the R word.
In it’s most clinical term, it refers to one side of a person. The side that can be measured by an IQ or other developmental test.
When the R word is casually used to describe either ourselves or someone else when they do something we deem stupid, dumb, or absent minded, I realize that we are not trying to hurt people with a real disability. But how could it not be insulting to someone who is just trying to do their absolute best?
The campaign to end the R word isn’t meant to stop anyone from being themselves or censor free speech. It’s meant to bring understanding to a segment of the population which for so long has been misunderstood or invisible.
As family members and friends of people who have an intellectual disability, we know the value that each person has brought to our lives and communities.
Everyone has special talents and gifts. By marginalizing people with outdated terms, we make it easier to ignore their humanity.
We also cut ourselves and our children off from knowing some amazing individuals.