Speaking for Two: An Introduction
When I was a kid, my mom would tell me that everyone has a gift to share with the world. The idea of that fascinated me and it seemed like my life’s purpose was to find out what my gift was. Turns out that wasn’t necessarily true, but I did find my sought-after gift; or I should say, it found me. To sum it up into a word: advocacy. My gift is being a voice for the voiceless. Whether it be the mom who didn’t make it to the hospital before her baby passed away, the kid in school getting bullied, or for my brother Russell who can’t talk.
Hi, I’m Regan. I am the oldest sibling to two wonderful humans, one of which has intellectual disabilities. I live near Atlanta, Georgia and am a full-time nursing student, mom, and patient care technician in a level III NICU. I’ve been blessed to travel on a lifelong road of advocacy that has brought me to this point. I’m going to share it with you today.
My brother Russell was born when I was 5 years old and I couldn’t wait to be a sibling! He has Down syndrome and the explanation I received was: he would be just like other kids, just a little bit slower at some activities. (Shout out to my parents because how else would you explain a chromosomal anomaly that affects every cell and trait of a human, to a 5-year-old?).
And I took that with me everywhere. Some of my earliest school memories are of me explaining to my peers what Down syndrome was, with that exact verbiage. I never considered Russell different. We grew up together, learning a language and building a bond that is unparalleled by anyone. But Russell wasn’t exactly like other kids. Sure, in a 5-year-old’s mind he was: he played, ate, and went to bed just like me. The thing was, Russell didn’t talk. He was so fun loving, and kind hearted. He was the happiest person I knew. These were things that made him different, far beyond the extra chromosome.
I was excited to find opportunities to share Russell’s story throughout adolescence. I found a slightly stronger voice and felt passionate to speak up. In 2011, I ran a blog for personal use. It was just my place where I shared things I liked and was able to freely speak my mind. A day of morbid curiosity took me to a site to look up what the word “retarded” meant in slang terms. Some of you may know this part of the story, but I made a video regarding my disgust with the slang and derogatory use of the word.
It may be cheesy of me to say this — but the rest truly is history. That video changed my life. It was viewed by so many people that knew exactly how I felt. For the first time I realized that people will listen to me. I got my first glimpse of the power of passion and transparency. Words can hurt people, but they can also unite and heal. I made the video to speak up for Russell and ended up speaking up for many others. This video is viewed in various classrooms, meetings, and Special Olympics/Spread the Word events to this day.
6 and a half years later, here we are. I am now a young adult, building a life for myself and a child of my own. I’m finishing up nursing school this summer and am looking forward to taking my gift with me and continuing to spread it. I have encountered times in the NICU where I have been able to use my gift to help people. I’ve stood next to the sobbing young mom who doesn’t know what to do because her baby was just diagnosed with Down syndrome. I gave her these words:
“I do not have a child with Down syndrome, but I am a sibling. I know you’re scared right now but it will be okay. Your baby is going to be okay. She is still your baby, and some things in the future may be different than what you pictured but it will be okay.”
See what I did with the “he will be just like other kids” explanation? I told you I took it everywhere.
Thus, I planted what I like to call, a seed of inclusion. These are conversations or actions that exhibit inclusion in real life. For me, it was planted when I was 5. I have never known anything else. For others it may be planted later. The point being, those of us living without intellectual disabilities have a responsibility to include and advocate. Whether you accept the responsibility or not is up to you. I’ll leave you with a reminder that the use of compassion and empathy can move us forward better than anything else. Think of others. Mind your words. Include by example.
Regan Bievenue
If you have a story, video, photo, poem, essay, guide, dance, (or anything else) to share with the world, follow the three easy steps in this link or publish your story on Medium and email it to spalumbo@specialolympics.org. If you prefer, you could also put your story into a word document, let us know whether you would like it published under your name or anonymously, and email it to spalumbo@specialolympics.org.
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