3 Ways to Connect with the Down Syndrome Community

Martin Luther King, Jr. once said, “Let’s build bridges, not walls.” His words offer a challenge worthy to be considered.

For many years, walls were built to keep people with Down syndrome separate from their families and communities. Those with an extra chromosome were seen as immoral, the result of sin, a burden on the entire family.

Medical walls were built by surgeons who refused to provide life-saving surgeries for newborns diagnosed with Down syndrome.

Domestic walls were built by ‘experts’ who strongly encouraged institutionalization and forced sterilization of children with Ds.

Verbal walls were built by degrading language used to describe people with Ds.

Vocational walls were built by employers paying less than minimum wage for employees with Ds.

Educational walls were built by schools that will not include or provide appropriate services for students with Ds.

How sad that we humans have used our time, energy, and resources to stack bricks rather than dismantle them.

In the U.S., the walls of institutions and other social barriers continue to fall but there are still (less obvious) walls that need removed in order to include and build relationships with people who have Down syndrome. Sometimes these walls look more like fear, ignorance, or apathy:

• Fear: “I don’t want to inadvertently say something wrong or offensive so I’ll just not say anything.”
• Ignorance: “I don’t know how to relate to those people. I just don’t know what to say.”
• Apathy: “I don’t feel like connecting. And why should I? It’s not my job.”

If we’re honest, each of us has some resistance or even aversion toward certain people who are unfamiliar or seem annoying to us. Avoidance is an emotionally safe response, the default that keeps us from risking a few splinters and laying down planks to bridge the divide. In church culture this avoidance might be couched in religious language, “I just don’t think I’m called to serve those kinds of people.”

I’m not suggesting that everyone in a church community should work exclusively with those who have disabilities. I am however, suggesting that those of us in church culture may be guilty of using religious language as an excuse to distance ourselves from those we’re called to engage. Serving with an ‘us-them’ perspective in any capacity isn’t effective for wall removal and bridge building–nor does it reflect the character and work of Jesus, the One many of us claim to follow.

So, how can we break down walls and build bridges to connect with those who live outside our socio-cultural circle? How can we move from knowing about Down syndrome to actually knowing people with Down syndrome, especially if they’re not a part of our daily life?

I offer these simple steps.

3 Steps to Connect with those who have Down syndrome:

1. Initiate. When you’re out in public and see someone with Down syndrome, make eye contact, smile, and say ‘hello.’ This simple gesture reminds the person with Ds and the parent of a child with Ds that they are worth your attention. If you really want to go bananas, you might even introduce yourself (gasp!). Take a moment to chat. Look to the parent or caregiver for cues, if needed. Ask about their day, the purpose of their outing, school, work, etc., (any topic you’d chat about with a typical family). Most parents appreciate when people make the time and effort to introduce themselves and get to know their kids. Don’t let fear, previously awkward meetings, or apathy squelch an opportunity to engage. You’ll likely leave that brief encounter encouraged and inspired–but even more, you’ll assure a family that they matter.

2. Invite. If you know of someone with Ds, a parent raising a child with Ds, or your child has a classmate with Ds, include them whenever you can. Whether you’re hosting a birthday party or a gathering in your home or meeting friends for a playdate, extend the invitation, even if you don’t know them well.

Sam and I recently attended a birthday party for a kid in his class at school. I was nervous as we knocked on the door of an unfamiliar home, where I wondered if he would be included. I silently chastised myself, as one of Sam’s classmates greeted us at the door and welcomed him with great enthusiasm and a gentle hug, “Hi, Sam! Hi! Wow! Sam, I didn’t know you were going to be here! Yay! Sam, you’re here!” This 5 year-old boy was so genuinely thrilled to see Sam that I dropped my purse and stood by the door for a minute, struggling to swallow the lump in my throat. I didn’t realize how much I wanted him to be included, to be seen and valued by his peers.

Be like Sam’s classmate and send the invite. You’ll leave a grateful parent speechless.

3. Volunteer. This third step in connecting with people who have Ds seems most effective with specific, consistent work over time. Your faithful presence in local organizations and programs and/or in a church setting provides opportunities for you to regularly connect with the Down syndrome community.

Our non-denominational church has worked hard to specifically include those with different abilities. They provide a buddy for Sam (and several other kids) every Sunday. Once a month, they host a family respite night, as well as a parent group for those raising kids with different abilities. Free childcare is provided at each monthly gig for all of the kiddos. Yep, you read that right. ALL of our kids. For free. I get all verklempt just writing about it.

This inclusive approach works well with committed volunteers (like you) and a compassionate community whose leadership not only values people with different abilities but also provides support, resources, and encouragement to their families.

For those of us who have minimal, if any, contact with people who have Down syndrome, we would do well to initiate, invite, and volunteer wherever and whenever we can. Choosing to do so will help dismantle walls and build bridges that connect us to a community full of wonder, where we can love the oft excluded, learn from each other, and find our lives enriched.

If you’re interested in connecting and developing relationships with those who have Down syndrome or finding organizations that specifically serve those with intellectual disabilities, here are a few options to get you started. Check your local area for more details.

• National Down Syndrome Society: The leading human rights organization for all people with Down syndrome. Click here to learn more: https://www.ndss.org
• Buddy Walks: Annual walks held throughout the country, with the goal of promoting education and acceptance of people with Ds. Click here to learn more: https://www.ndss.org/play/national-buddy-walk-program/buddy-walk-faqs
• Special Olympics: This is the world’s largest sports organization for people with intellectual disabilities. A variety of volunteer positions are available to help serve and support athletes and their families. Click here to learn more: https://www.specialolympics.org
• Gigi’s Playhouse: An organization that seeks to “change the way the world views Down syndrome through national campaigns, educational programs, and by empowering individuals with Down syndrome, their families and the community. We offer free therapeutic and educational programming to individuals with Down syndrome and their families.” Click here to learn more: https://gigisplayhouse.org
• Night to Shine: Sponsored by the Tim Tebow Foundation, Night to Shine is an annual global event where people with disabilities participate in prom. From the limos and red-carpet entrances to professional photographers, karaoke, and dancing, this night was created to remind participants of their inherent worth. Click here to learn more: https://www.timtebowfoundation.org/ministries/night-to-shine

If you want to diversify your social media contacts by including people with Down syndrome, I recommend Instagram to follow these educational and entertaining accounts:

@theluckyfewofficial

@eicherumba

@changingthefaceofbeauty

@happysoulproject

@cedarsstory

@karenjp0915

@lifewithmicah

@jimboistheman

@rubysrainbow

@globaldownsyndrome

@littlest_warrior

@ndssorg

@johnscrazysocks

@savedownsyndrome

 

Where do you see walls in your community and how can you help dismantle them?

Where do bridges need built instead?

What would it look like for you to initiate, invite, or volunteer?

*Bridge photos by Arcaion at pixabay.