I don’t remember life before Jason was born. I imagine I enjoyed my two years as an only child, but I simply have no recollection of life without him. The memories I do have include pulling Jason across our tile floor to hear him giggle, sitting together on the couch as we went on an imaginary trip with my dolls, and running along side him the very first time he rode a two-wheeled bicycle. There are other memories as well: visiting doctors' offices, watching therapists come in and out of our house, and constantly translating Jason’s developing speech to others. The memories meld together, not one more specific than another, not one less “normal” than another.
The first time I remember defining Down Syndrome was when my parents and I gave a presentation to Jason’s fourth grade class. We knew his peers were asking questions and felt if we could explain some details, they would be more accepting as they got older. They were, at times – but not always. As a sister I defended my brother when others took advantage of him or teased him. Many times Jason didn’t even notice, but I felt it was my responsibility to guard his dignity.
For many who have never met someone with Down Syndrome, it might be difficult to imagine how much can be gained from someone with a disability, someone who – by society’s standards – is lacking. People with Down Syndrome are burdened by many stereotypes - most degrading, if not offensive. None of them come to mind when I think of Jason. Through Jason, I have learned what it means to be strong, courageous, sincere, and honest. Jason has shown me how to forgive others, how to experience joy in the smallest of moments, and how to love radically.
As we grew up, I worked to create new ways for Jason to be included - founding a club to host social opportunities for students with and without disabilities in high school, Camp PALS, a sleep away camp for young adults with Down Syndrome, and in college an annual conference for children with Down Syndrome, their siblings and families. After graduating, I found a new home working for Special Olympics. Our mission challenges and inspires me every day, but the real honor is working for an organization that has directly enhanced Jason’s life.
My brother has been a Special Olympics athlete since he was very young. He currently competes in floor hockey and basketball, and just returned from the 2010 Special Olympics National Games with a bronze medal in soccer. Jason is also training in Special Olympics tennis and volleyball, and has weekly weight training sessions.
Beyond sport, Special Olympics has taught Jason about advocacy. After learning about the Spread the Word to End the Word campaign, Jason wanted to take a stand. The more involved we got in Special Olympics, the more Jason developed a voice. All of a sudden there were people who listened, who asked for his insight, and who actively pursued friendships. Through this simple acceptance, these acts of inclusion and demonstrations of value for another person, Special Olympics transformed Jason’s world and empowered him to begin reaching his full potential.
As a sibling of someone with Down Syndrome, I am frequently asked: Would you change it if you could? If you could separate Jason from his diagnosis of Down Syndrome, would you take away the disability?
Looking back, I consider the many ways I’ve worked to make Jason included, to have people see his value. I’ve never once considered changing Jason - I try to give others new experiences, transform their misconceptions and re-direct their expectations. If I am eliminating a disability, the disability is not in Jason – it’s in the world.
For every athlete like Jason Newbury, there are many more waiting for their chance. Donate to Special Olympics and help us reach out to one more person who wants to participate in sports and reach their full potential.