We love the stories of people with disabilities accomplishing great things or “beating the odds.” Beethoven was deaf – he’s one of the most recognized composers of all time. Helen Keller was the first deaf and blind person to earn a college degree – she was an author, political activist and lecturer. Stevie Wonder was born blind – he’s an accomplished and beloved musician.
I see this theme play out when it comes to other disabilities. My youngest daughter has Down syndrome, so I try to keep up with the many happenings in the Down syndrome community. I’ve read articles of people with Down syndrome earning college degrees. I’ve watched viral videos of individuals with Down syndrome and marveled at the clear speech, the eloquence, the powerful messages, the TED talks. I’ve read of kids with Down syndrome winning spelling bees, reading better than their typical peers, taking standardized tests with no accommodations.
We share the videos and the articles, and we say, “See, look at what is possible, people with Down syndrome can accomplish great things!” And it’s true, people with Down syndrome can accomplish great things. But sometimes I feel these stories are highlighted to justify why people with Down syndrome deserve a chance, why they should be accepted. “See, they’re almost ‘normal.’”
I’m afraid that when we only focus on the stories of the individuals who are an exception, we do a disservice to the vast disability community as we fail to show the wide representation of disability.
Perhaps it is because whether we want to or not, we are all susceptible to the messages that permeate our society: talent, performance, and intellect are what matters most, and the more you fall away from that, the less value you have in society. These are ideas that have been present for as far back as we go, across cultures and beliefs.
The truth is this was something I had to wrestle with when my daughter was first born. I thought, “For as long as she turns out to be as great as Pablo Pineda, it will be okay.”
But my child is not the exception, she is the average. Perhaps in some areas she struggles a little more, but this I know: her life has just as much meaning and value as mine or the person with the higher IQ, and her life is beautiful. She has much to offer and contribute to this world and those around her. I know from a personal standpoint, she has been the most influential person in my life, she has changed me for the better, and I like to think that her influence in me has spread as I relate to others. She has also made me frustrated when she’s not listening or refusing to obey, made my heart melt when she hugs me tight and tells me she loves me. She’s a full person.
And her life matters. Her story matters. Yes, we need to show the world the kids with Down syndrome beating the odds, but we also need to show the kids with Down syndrome who are non-verbal. We need to show the kids with Down syndrome who have a dual diagnosis of Down syndrome and autism. We need to show the kids with cerebral palsy who can walk, and the kids with cerebral palsy who use a wheelchair, and the kids with cerebral palsy who need total care and support because of their limited mobility. And we need to show the kids with autism who are on top of their class, and the kids with autism who are non-verbal. We need to show the world the vastness of disability.
It is about living life to the fullest, and that looks different for every person.
All stories matter.
All life has value.
My daughter has Down syndrome. She is not the exception, she is herself. I don’t want her to be “normal,” I just want her to be her. To me, she’s perfect exactly the way she is.