A blog post by PR and Marketing Coordinator, Mary Stanley
On March 1st, we ushered in the campaign to “spread the word to end the word,” referring to the use of the “R” word. This designated date fittingly rolls into a month-long promotion to raise awareness of Down syndrome. While most people are aware of this disability—and I use the term disability here, loosely—what we really need to stress this month are the abilities of people born with an extra chromosome.
In less than 30 minutes of research on people with Down syndrome, I came across several articles and blogs: one about a model, another about an author, and still another about a college student, all of whom possess the extra chromosome but refuse to let their diagnosis define who they are or limit what they can become. The common thread that runs through each of their stories is the need to change society’s perception of this disorder. Once we are able to do that and begin providing meaningful opportunities for individuals born with Down syndrome, what we find are people who have the potential to live rich, fulfilling lives, who bring as much joy and love to friends and family as any other member of society. From getting married—yes, I read about a couple celebrating 22 years of wedded bliss—to designing a clothing line, to owning their own businesses, to teaching pre-school, people with Down syndrome are demonstrating that, once the stigmas and, ultimately the barriers have been removed, anything is possible.
Changing the perceptions, I believe, begins with an understanding of who people with Down syndrome are and that understanding comes from families and friends sharing their wonderful and beautiful stories of the love and joy that these individuals bring to their lives and the overwhelming pride they feel in witnessing their accomplishments. “She doesn’t listen to what she can’t do and she makes everything seem possible. Her smile alone is one that brings you joy in an instant. We continue to be amazed at what she has overcome and how she has beaten such great odds. No one looks at her and sees Down syndrome. They look at her as a beautiful little girl who is ready to take on the world,” says a parent on the website, nothingdown.org, an organization devoted to educating parents, future parents, and the world about Down syndrome. Another parent on the website writes, “There is so much about Aiden that has brought our family joy and it’s hard to put it into words. His smile alone is enough to melt your heart. The constant love that he shows us is beyond words. He has brought our family and friends even closer just by being him and he has made all of us better people, more aware, more accepting. We couldn’t imagine life without him!”
To be clear, it is not just parents who have a profound love and admiration for people with Down syndrome. In a powerful essay written by 18 year-old Laura Hertzog, whose brother was born with Down syndrome, she writes, “ I didn’t ask for my brother to have Down syndrome, nor did my parents, nor did my brother. However, I know we can all agree David is the reason our family is so strong. It’s the reason my mother fights for to uphold human dignity every day. It’s the reason for my father’s compassion. It’s my reason for counting my blessings at night. It’s the reason for my sister’s generosity. Down syndrome may have put some road blocks in the way, may have caused some eccentric looks from strangers in the crowd, but ultimately Down syndrome has brought my family joy and has redefined perfection for each one of us.”
As we celebrate Down syndrome awareness month, and especially on March 21, which is World Down Syndrome Day, consider all that is possible for individuals with Down syndrome, when limitations are removed and opportunities of inclusion are offered. Please help others to better understand what it means to have Down syndrome by sharing your fondest and happiest memories of a person in your life with the extra chromosome.