4 Lessons My Job Taught Me About Down Syndrome


Just over six months ago, I took a dream job with a small family foundation focused on serving families and children with special needs. I’ve spent this time 100 percent focused on the Down syndrome community – and specifically, working for an innovative social enterprise that is helping to strengthen and support the fundraising, social media and community-building infrastructure of the many small, local Down syndrome associations around the country who put on annual events known as the NDSS Buddy Walk®. Here’s what I have learned during my time working within the Down syndrome community:

1. People-first language is essential. One of the first things I learned is that we never call children with Down syndrome “Down syndrome kids” or “Down’s kids.” People-first language means always leading with the child or individual. Down syndrome is merely a condition and one part of the whole child. A child might have red hair, green eyes, a fantastic smile and Down syndrome – it’s just one factor and shouldn’t be considered the defining one. Similarly, you might meet a young adult who has Down syndrome – but that young adult is so much more than just that one diagnosis. In our words and in life, we must always focus on the person first.

2. The ‘R’ word is never OK. It blows my mind that there are still people who say, “Oh, don’t be so serious, I’m just goofing around, I don’t mean any harm” to defend their use of the ‘R’-word. STOP using it to describe yourself, to describe your friends, to describe anything. Even – and especially – if you think you mean well, stop saying it. It is a horrendous thing to use language that hurts others so deeply it makes them want to vomit. Why would you ever want to use a word so hurtful and hateful? Yes, we as a society used to use that word – but that was before we knew better. File it away with other hate speech and do not use this word. Please and thank you.

3. The medical establishment has it wrong about Down syndrome. Perhaps one of the most shocking things I’ve learned during my time working in this amazing community is just how negatively most medical practitioners share this diagnosis with families. It’s usually preceded by an “I’m sorry” and delivered in a serious or even sad tone. Are you kidding? These people either just had a beautiful baby or are about to have one – unless there’s some sort of life-threatening situation going on, let’s start with congratulations! I loved this blogger’s take on the diagnosis and how this important news should be shared. Clearly, doctors know a lot – but they don’t know everything, especially when it comes to Down syndrome. The docs who deliver the news so gravely clearly haven’t been to a dance party with kids or adults who have Down syndrome.

4. The Buddy Walk® is an important event worthy of your support and participation. There are many causes in this world – some get a lot of attention, others are lesser-known. I love the way a rare disease like ALS became part of the country’s consciousness this summer when the ice bucket challenge went viral. I wish for something like this to happen to the cause of Down syndrome awareness, because these kids and individuals are part of our community and part of us. As is often said in these circles, “We are more alike than different.” It’s so true – but sometimes it takes having a friend, neighbor, relative or colleague with Down syndrome to learn how truly alike we are. I encourage you to seek out the local NDSS Buddy Walk® in your area, find a team and walk with them, or simply make a donation. Funds go to much-needed support services that can be a real help to families and individuals with Down syndrome. And you will never attend a more joyful, fun and family-focused event than the Buddy Walk.

I will leave this job a better person – and that’s not something we can always say. I’m so glad my chosen career path brought me into the Down syndrome community even if for just a short while, and I can honestly say that I will always be a fan of the Buddy Walk and the great work that local and national Down syndrome organizations are doing for families, children and adults with Down syndrome. Next time you see someone with Down syndrome out in your neighborhood or community, smile and say hi. You might just make a friend for life.

This post originally appeared on DS-Connex.

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