Belonging Together

What support exists in St. Louis for people with Down syndrome?

St. Louis is an amazing region for families who have children with disabilities. I’m part of a coalition of service providers, and I can say that there are dozens and dozens of agencies dedicated to serving people with intellectual and developmental disabilities in our area, such as St. Louis Arc, Special Olympics Missouri, Easterseals Midwest, The Maren Fund, The Down Syndrome Center at St. Louis Children’s Hospital, Sunnyhill, and more. From recreation to day programming and employment services, St. Louis is really a bright spot in the region for services for people with disabilities. The Down Syndrome Association of Greater St. Louis is one of the largest Down syndrome associations in the country. We’ve grown a lot, so now people from around the country look to our organization for best practices and programs and services. I’m really proud of that and the support that we’ve gotten from the region to help us get to the point that we’re at.

Why is the work of the Down Syndrome Association of Greater St. Louis so important?

A lot of times I will look to history to inform why it is so vital to continue and to persevere. When I think about where the disability community was 50 years ago, they were still institutionalizing people and the life expectancy for individuals with Down syndrome in the 1980s was only 25. That’s because health care providers, generally speaking, were not paying attention to people with Down syndrome. Their lives were not seen as being valuable enough to invest in health care. They were being put in institutions where they were not educated, they were not cared for, and they died way too young. 

Now we can say, “Look how far we’ve come.” Kids are being educated much more in the general education classroom and they are included in recreational opportunities. They are being employed more than they have been before. But I don’t think we can forget where we came from because it’s too easy to go backwards. We have to keep fighting for inclusion because not only do we not want to go backwards, but we still have a lot of work to do. 

For instance, we would not know that there’s a connection between Alzheimer’s disease and Down syndrome if people with Down syndrome were dying at 25. But because they’re living longer, now we understand this connection. And because of that, there’s research being done around Down syndrome and Alzheimer’s, and we’re understanding Alzheimer’s disease for all people better. If we didn’t continue to push, if we didn’t continue to think that things could be better, we would not have gotten where we are. But we still have so much to do.

Tell us about that — what sort of work still needs to be done?

We just finished our strategic plan for the next five years and outlined four big goals. The first is advancing inclusive education for people with Down syndrome. We also want to transform health care for people with Down syndrome, specifically adults. There are far too few health care providers that know how to treat people with Down syndrome, and those are part of social determinants of health and health care education. These are really critical things to help people live their best lives. 

We want to continue to serve underserved communities, such as immigrants, Spanish-speaking populations, and families with low socioeconomic status. They need services as well, but they probably need them in a slightly different way. So how do we reach them? How do we meet them where they’re at to ensure that their loved one has what they need to thrive? 

And then the last (goal) is ensuring lifelong independence for people with Down syndrome. That means helping families get more therapeutic programming, helping folks learn the skills they need to live independently, and find employment in the community. Our vision is an inclusive community where all people with Down syndrome can reach their full potential.

What does it mean to you to do this work in St. Louis?

St. Louis is such a diverse, rich area, and we do have so much to offer. Building our inclusivity and continuing to focus on diversity, equity, and inclusion — and not forgetting people with disabilities in that conversation — is really important. I’m really proud that we’ve been able to work along with other great disability organizations to make sure that people with disabilities are included in that conversation. There’s still a lot of work to do, but St. Louis is such an open and generous population that folks really want to band together and help the community, and they really want to help our disability community. It’s also excited me to see how many good people there are in this region who are collectively working to make the region even better than we already are.

How did the “Belonging” exhibit come about, and what message do you hope it sends?

Randy Bacon is an artist from Springfield, Missouri, and he is a beautiful human who has dedicated his photography and videography to shining a light on populations that are not always seen — those who are experiencing homelessness, Indigenous people, people with Down syndrome and other disabilities. He really believes that every single human on the planet is unique and has something to offer the world. The message of our exhibit is about belonging. Belonging is one of the most critical components of inclusion — if you don’t create a space where people feel like they belong, you’re not doing the real hard work. You cannot include people as a token; they have to feel like they belong where they are. 

(Bacon) is able to get these amazing portraits of individuals where you feel like you can see their soul. We’re really trying to spread this message that individuals with Down syndrome have extraordinary lives. They have extraordinary gifts to bring to the world. They have beautiful messages to share with humanity. The most surprising thing to me when I got a sneak peek at some of the videos and the stories was that it’s not really about Down syndrome at all. It’s about our shared humanity, and you’re looking at it through the lens of somebody with Down syndrome. It’s about perseverance. It’s about resilience. 

The messages that you’re going to hear in this exhibit are so translatable to everyone. We’ve really tried to capture the stories of very different families of different races, ethnicities, and backgrounds. We have a mom who adopted her son with Down syndrome. We have the story of a sister who lost her brother with Down syndrome to Alzheimer’s disease, a family who has two children with Down syndrome. We want to show that people with Down syndrome are not a monolith; they’re all very unique in and of themselves, and they have beautiful things to share with the world.

What do you hope viewers take away from the exhibit?

I was originally thinking that I really want the world to see people with Down syndrome. I want legislative change, I want better health care, I want more inclusive education, and we’re going to be able to make this happen because we’re going to be sharing these voices. That is still true, but especially in the climate that we’re in right now nationally, things feel really divided. And I think this exhibit has the power to open hearts and minds beyond just the Down syndrome community. 

I hope that people witness this exhibit and they think about how they can go out into the world and be a better community member. They can be a better friend, better employee, just by having an open heart and an open mind to all different kinds of people. I hope that when people see this exhibit, they feel inspired and encouraged. There are a few messages in some of the videos that really spoke to me — for instance, when things get hard, you have to persevere. Who doesn’t need to hear that message? 

Hope, inspiration, perseverance. Let’s treat each other with this idea that we have a shared humanity and not everything has to be so divided.