My First Time

If you ask a mom in the disabilities community about the first time she heard the r word after she learned of her child’s diagnosis, I can guarantee she remembers. This is the story of my first time.

The ocean air hits my face and I welcome it. I finally begin to relax. The past 24 hours were exhausting. Truthfully, the past year was, but we are here. Our family is on the beach and on vacation. My feet brush against the rough sand as I try not to move. I don’t want to wake the baby. She is wrapped in a beach towel resting in my arms. We sit under the umbrella.

There is a large group of people in our crew. Sienna and I are somewhat off to the side. I don’t know everyone here. The beers are flowing. I notice a beach tag girl coming towards us. I gesture to my mother to hand me the bag where I stored our tags. A person in our group says, “Uh-oh. Here they come. When I was young, we used to pretend we were r******* to get out of paying for beach tags.” A few people laugh. A few people look toward me to see how I will react. Someone notices the tension and swiftly changes the subject.

My heart races. I feel the blood pumping swiftly through my veins. That relaxation I felt evaporates into the air. My stomach flips, and I feel as if I could throw up. My body sinks into my beach chair. I don’t think I could move if I tried. My head feels dizzy and light. My arms grip the baby protectively and instinctually. My eyes water and I am grateful for the sunglasses on my face. I knew it would happen. I knew this moment would come, but I didn’t expect this physical reaction. I didn’t expect it to hit me this hard.

I want to wrap Haley, Sienna, and me in a bubble and float off to a deserted island where no one can touch us. I want to protect them forever. How will I do this? Will I ever be strong enough to defend her? Will she hear this word? Will it cause this physical reaction? Will Haley hear it?

Obviously, I recovered from this moment. Shortly after this happened, I started my blog. Now when people say this word in front of me, they catch themselves. They cover their mouth, look at me and say, “I’m sorry.” I appreciate that. I do. But I can’t help but think…..what if I wasn’t here? Would they still stop mid-sentence? Would they use the word freely? Is my presence the only thing stopping them from saying it?

I’m posting this, because I want you to know how much this word affects us. I want you to understand the physical reaction it causes me. I want you to stop using that word all the time. I don’t want to hear I am overly sensitive or being too P.C. I don’t want to hear you weren’t talking about my child. None of that matters.

In the past, I gently corrected people when I heard this word. I’d be lying if I didn’t acknowledge the fact that I remember each and every person in my life that said this word in front of me. I do and it hurts. It’s a gut punch. I am sick of being gentle. I am not gentle anymore. Life hardened me. Expect to be educated if you say this word in front of me.

Have you ever heard of Rosa’s law? President Obama signed this law on November 17, 2009. The law removes the terms “mental re*****tion” and “mentally r*****ed” from federal health, education, and labor policy. It was replaced with the following people-first language; “individual with an intellectual disability” and “intellectual disability”.

The r word is never acceptable. If you see it on any medical paperwork, please inform the office that they are violating the law by using outdated terminology. If you hear a friend say it in casual conversation, ask them not to use it. Remember this story. There are thousands more like mine.


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