In 1981, just before I turned 12, my family packed our belongings and emigrated my then 15 year old brother and I from the small island of Taiwan. We arrived in Wichita, Kansas, where the vast landscape seemed to go on endlessly. I was immediately struck by the casual friendliness of the American people, cake that came out of a box (just add eggs, oil, and water!), and paper towels that you throw away after one use. I had understood that I was going to learn English and live in a place very different than Taiwan, but I would not fully grasp the different trajectory my life was about to take.
Nearly a decade later, Orlando Cotto arrived in Bloomington, Indiana, eager to further his study of percussion music. As a young man growing up in Puerto Rico, he had taught himself to play the hand drums at the age of five and started touring with a folk music and dance troop by the time he was in middle school. As he began formal education in classical music in college, however, he realized that his musical career on the island was going to be limited. He sought to expand his opportunities by applying to a graduate program at Indiana University and he was accepted.
Somehow, Orlando and I met, fell in love, and got married. Our lives were good. Both of us had advanced degrees in our respective fields. Orlando was performing frequently and had steady teaching jobs that brought good income. I had a job that I loved and it came with awesome benefits. I was enjoying my new found passion in SCUBA diving, something I would have never done had I stayed in Taiwan. We owned a home. We owned a cat. We were living the American dream.
Or so we thought.
Then I became pregnant. We found out at 20 weeks gestation that our baby boy had Down syndrome. As we were given the awful task of deciding what to do with the pregnancy, we knew immediately that we were going to be this boy’s parents. What we were afraid of was how the world was going to respond to an innocent child with Down syndrome.
Our immediate concern was not the reactions of our family members who lived thousands of miles away. We had a much more pressing need of finding people locally who would accept our son for who he was and building a local network that would provide us the nurturing and support on a daily basis.
Our search began with one person, one place at a time. The therapists from early intervention services immediately gave us the support and optimism that we needed. Then after interviewing several family day care providers, we found, and fell in love with, one family day care that accepted Luis one hundred percent for who he was. And we heard from friends and met strangers who disclosed to us that they had family members with Down syndrome. Then we joined Chesapeake Down Syndrome Parent Group (CDSPG). Here we met so many wonderful families that have the same fears, hopes and dreams for their loved ones with Down syndrome. Here we don’t have to explain ourselves to anyone. We were loved and supported.
Then our network grew exponentially when we tapped into social media. Through Facebook, chatrooms and listservs (plus many more!), we reached even more people than we could ever have imagined. We had access to information and advice that we could not have by staying local. More importantly, I began to hear incredible stories about individuals who had the courage to dream a different future for their children and the determination to make their vision come true. I was truly moved when the Stephen Beck, Jr., Achieving a Better Life Experience Act of 2014 (ABLE Act) became law. As many of you already know, this law will give people with disabilities more control their own finances without so easily losing federal benefits in the current system. But what you may not have known is that, after Mr. Beck and his friends conceived this idea around a kitchen table, he spent the next eight years bringing this vision into law. They were probably thinking only of their children when they started this but now their actions will benefit millions of people!
I then realized that this is the American Dream: to create something out of nothing. I realized that sometimes the opportunities are not to be sought; they are to be created. I now believe that in America, if you can see it, it can happen. I have begun in my small ways to truly live my American Dream. By organizing education workshops for CDSPG I am creating opportunities for families and self-advocates to talk and think about the future they want. By inviting speakers to the DS community, I am telling them that we are united and that we are not afraid to ask for respect, acceptance, and a life worth living. America has always been about creating opportunities and reinventing yourself. And that dream applies to people with Down syndrome too.