Guest blog post by Adrienne Bievenue
I’ve been in the Down syndrome community for 22 years now, thanks to my son, Russell. That’s 23 times I’ve celebrated Down Syndrome Awareness Month. That means 23 Octobers where I celebrated the beauty of Down syndrome. We’ve met some amazing families on our journey. We have rejoiced in all the accomplishments and cried through the pain alongside all these families who are on this journey with us. In our community, as well as other disability communities, being included has been a tough journey. Sadly, being included is something we are all still fighting for, even in 2020.
Along the way we have cheered on some amazing “rock stars”. We have paved the way with shows like Born This Way, movies starring people with Down syndrome, kids making cheerleading teams, prom kings and queens, etc. We celebrate with you while sitting at home. We cheer you on and are proud of those moments, as if they were all our children. I get emotionally invested!
I know in the Down syndrome community it’s taken us a long time, and a bit of a fight, to be included. I’m thankful for the rock stars that have helped change the perception of those with Down syndrome. Our children and adults with Down syndrome truly can do what their typical peers can do.
But sometimes disabilities aren’t pretty. Down syndrome isn’t always pretty. There are a lot of comorbid things that can go along with Down syndrome. And when it’s not “pretty”, it gets harder to be included. It gets harder to be chosen to be in that calendar. Or in that photo campaign. Or on the jumbo-tron in NYC. Or featured in that news story. Or less stared at. Sometimes it’s harder for that child or adult to navigate life. Sometimes they won’t achieve what some of their peers with disabilities are doing.
There are g-tubes, ankle braces, gait trainers, communication devices, chewy tubes, insulin pumps, hearing aids, and a lot of other “things” that make the disability less “pretty”.
It makes these accomplishments less relatable for some of us in the Down syndrome community. While we do cheer on Russell’s peers, we can’t help but wonder why we don’t share the “ugly”. I often wonder why my one-eyed, non-verbal (as in completely, never talked), Autistic child in a wheelchair who stims on his pant legs and chews on the end of a pillow isn’t being celebrated. Deep down I feel it’s because he is less “pretty”. If I am being honest, I recognize that it can be more difficult to look at a child with one eye who is moaning. A child who will never walk again. A child who stims all day. A child who now has Tardiv Dyskinesia from years of being on a medication he needed. But that’s my son and he deserves to be loved, included, and celebrated!
I wish there were calendars or photos that celebrated and honored ALL of this. All the “ugly” parts we seem to only share about in private groups on Facebook, or our therapists or our BFFs. That’s the beauty of having a disability (or 2 or 3 or 4). We are all uniquely made and beautifully “ugly”. Russell is beautiful the way he is, even if there are others that have a hard time seeing his beauty. I wish we shared more of this “beauty” so everyone can see ALL the things.
This Down Syndrome Awareness Month, I join LuMind IDSC in celebrating the theme of #StrongerTogether. We ARE all stronger together. When we’re a community. When we welcome everyone, honor everyone, celebrate everyone, cherish everyone, and recognize the gifts and the beauty of each and every individual.
My Russell is beautiful and perfect in all his imperfections. Aren’t we all? Aren’t we all “Stronger Together” when everyone is included and each milestone – big or small – is celebrated?
We will keep cheering you all on! We know many of you are cheering us on. Because we’re a community. And we are…Stronger Together.
