6 Lessons From My First Months in the Down Syndrome Community

Down syndrome was never a big part of my life until last summer when, feeling a bit anxious about my lack of personal connection to the community, I joined the Down Syndrome Association of Greater Cincinnati as their new Outreach Coordinator. The disability world is not new to me; my cousin Andrew has autism. Over many years, holidays, birthday parties and movie dates, I’ve experienced the wonderful and challenging aspects of loving someone with a developmental disability. But until very recently, I haven’t known many people with Down syndrome. My job involves engaging and educating the community so that the world continues to be a more welcoming, inclusive and safer place for people with Down syndrome.

Along the way, I’ve learned a few things:

1. If you’ve met one person with Down syndrome, you’ve met one person with Down syndrome.

I’ve learned there’s a spectrum, just like there’s an autism spectrum. Everyone with Down syndrome is different, just as we are all different. I’ve met artists, business owners and entrepreneurs. Kathleen is a social butterfly; Sarah is incredibly shy. Some people have a lot of medical and mobility challenges; others are athletes. Some people with Down syndrome are incredibly kind, others are not so nice at times. Some love sports, others are great at ballroom dancing. We are all different and to think that all people with a certain diagnosis are exactly the same… well that’s just silly.

2. People with Down syndrome come from all backgrounds.

Down syndrome is a genetic condition, the most common one (about 1 in every 700 births), and it occurs regardless of race, ethnicity, gender or economic background. This doesn’t mean all communities treat people with Down syndrome in the same way: many cultures around the world still have a challenging, and in some cases deeply discriminatory, relationship with Down syndrome. I’ve learned that traditions and perceptions range in the U.S., too. For example, African-American and Hispanic/Latino families love their children with Down syndrome just as much as any other family, but community traditions and a history of institutionalized racism in our country can make people in those communities feel reluctant to reach out, and then disengaged from outside resources and support. I’ve learned to keep reaching out so that everyone feels welcome.

3. Intention is different from impact.

We all struggle to say and do the right thing. We may not intend to be hurtful or condescending, but our words and reactions can have that impact. It might feel natural to say, “I’m so sorry, that’s terrible!” when an infant is born with Down syndrome, but the impact of those words can be painful and long-lasting. I’ve learned to congratulate families on the birth of their beautiful new baby and express support, not condolences. I’ve learned not to assume what someone is capable of. I’ve learned to consider my impact (and of course I still make mistakes).

4. Cities, states and countries make laws that affect people with Down syndrome, without asking people with Down syndrome.

An important part of my job involves advocating for the rights of people with disabilities and pushing for laws that will protect their civil rights and help them thrive. I’m astounded at the number of local, state and federal laws that exist or are being created without
substantial input from people with Down syndrome or the families and friends who love them. Oftentimes, lawmakers simply aren’t reaching out. If they did, they’d find that this community has many strong voices, fierce advocates and small and large organizations across the country dedicated to supporting people with Down syndrome and other disabilities.

5. People with Down syndrome can do anything.

Natalia is bilingual. Chad and April both work at Cincinnati law firms. Nathan is a budding photographer and loves yoga. Rebecca
has encyclopedia-like knowledge of movies. Megan gives presentations to elementary school students. Ashton is super passionate about basketball. Jack is really good at ballet and scored a role in “The Nutcracker.” Payton rocks it at school and on the cheerleading team. I’m not discounting the members of our community with communication challenges or medically complex lives; these children and adults are completely capable of reaching their goals and can expertly communicate affection and understanding.

Empathy is a super power.

I’ve learned that people with Down syndrome have an amazing capacity for love and compassion. My friend Jill gives great hugs. Chad is still searching through “all the fish in the sea” for “The One.” Ten-year-old Carly knows just what to say when you’re feeling anxious. Patrice can tell when my coworkers are putting on a brave face but actually having a bad day. After an already tiring workday and a specifically challenging moment in which we were both struggling to understand each other, one of the adults I work with looked me in the eyes and said “Thank you, I love you.”  I think she meant: “Thank you for trying. Thank you for listening. Thank you, I appreciate you.” What if we were all capable of expressing such blatant empathy and appreciation? Think of what we
could accomplish together.

Written by Mariclare Hulbert

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