I wanted to send you a quick note asking you to take some time covering the first UN sanctioned World Down syndrome day on March 21st, 2012. There is a civil rights movement going on for people with Down syndrome (and other disabilities) that is an amazing once-in-a-lifetime occurance. It is unfolding before our very eyes, and with the United Nations jumping on board it is a perfect excuse to showcase how far people with DS have come, what exceptional things people with DS are accomplishing, and the bright future just around the corner.
When my daughter was born with a surprise diagnosis of Down syndrome I was in a state of shock like a drunken stupor. Quickly thereafter, the nurse started piling on all of the medical problems she would be prone to having and all the things she could never have or do (never drive a car or get a job, never have private health insurance, never own a house, never get married or have children). These were insurmountable challenges for a first-time father. (When the nurse started to tell me she would be forced on to Medicaid because insurances could discriminate against her and thus she would be forced into poverty to qualify for Medicaid I was in disbelief – this was not the America I was born and raised in. And from that very conversation forward, I committed myself to seeing Brianna’s civil rights restored to the status of an ordinary American.
In the last generation there have been mazing transformations in the quality of life for people with DS. In the 1980’s their expected lifespan was 25 years, today it is about 65 years (amazing). Just thirty years ago they were locked in institutions like criminals and today they often are in classrooms and jobs alongside typical peers. People with DS hold jobs, are actors (Lauren Potter comes to mind), get Married (Monica and David is a documentary movie on the topic), drive cars, and even go to college and own businesses.
At the same time they still are not given the chance to fully participate in society. They are often under-employed or unemployed, not given all the services in schools they need to be successful and productive, and housing options can be limited. More so, they suffer from outdated stereotypes that create self-reinforcing barriers.
Contrary to common understanding, most of us parents with a child with DS find them to be an amazing blessing on our lives. Our other children are more well-rounded and empathetic to others. We are less likely to get a divorce. Our children add tremendous value to our lives, and we know that once society at large begins to see people with DS with the same perspective as us, many of these barriers will shrink or disappear. And we will all be better off.
It would be amazing if our local media could help us get the story out about people with DS’s positive impacts and amazing contributions. It could be on the day of March 21st or a short human interest story each day of the week. We have amazing actors (Lauren Potter) and professional sports players (Albert Pujos) and advocates, regular people doing amazing things. How many times in your life will there be a people improving their acceptance and quality of life so rapidly? By changing people’s perceptions even a little, we can help accelerate a greater equality for and improve the quality of life for many deserving Americans.