What would a city for children with Down Syndrome look like?

Dustin DeKoekkoek and Dean Chamberlain are two Strong Towns members who recently connected via Facebook over their shared experience parenting children with Down Syndrome. In the US, thousands of children are born with Down Syndrome every year. I wanted to hear from Dustin and Dean about how we could better shape our cities to truly meet the needs of their kids, and children like them.

Today I'm sharing their responses to an email conversation the three of us had, and their overwhelming conclusion is that the small tweaks we could make to build safer, more productive cities for people will Down Syndrome will also benefits kids of all abilities — and make our towns much stronger in the process.

Dean and his family

Rachel: What makes a city ideal for a child with Down Syndrome (DS) in your experience?

Dean: I think a lot of the same qualities that make cities good for kids of all abilities make for good cities for kids with DS; however, when cities are missing vital components to make their communities kid-friendly I think that it more negatively affects kids with disabilities (such as DS) more than other kids.

Ideally, a city that is good for kids with DS has good (safe) non-personal auto transportation options, strong and supported schools (with good special ed!), lots of amenities (parks, library, community center, etc.) within walking distance, close-knit neighbors that know your kid, etc. 

Dustin: Much of what would make a city or town ideal for a child with Down Syndrome, like my daughter, is what makes a city or town ideal for any child. While disabilities impact all people no matter their background, socioeconomic and racial diversity in a city tend to create empathy.

When children grow up around those who are different than themselves and are taught that our diversity is a positive thing, they tend to be more accepting of someone like my daughter who may look or sound a little different than themselves. Additionally, cities and towns with infrastructure and land use that encourages interaction help create the social bonds that help us look past our differences and see each other as members of the same community.

Rachel: What would help your child thrive now and in the future in terms of urban design, transportation options, community, housing, etc.?

Dean: Right now, my son with DS is only 4 years old, so a lot of the direct "benefit" from good city form will come later on in his life. However, at his point in life, it's really helpful to have (a) walkability to parks, library, coffee shop, and other community amenities just like any small kids/parent with small kids would enjoy and (b) safe streets in case he (heaven forbid) somehow found his way out onto the street when we aren't looking. We currently live on a not-quite-stroad (residential State-Aid street that is much wider than it needs to be functionally) that I would love to have reduced in width or parking allowed on both sides (currently one-side parking) to slow the traffic down. Having good schools, including early education and special education, is really important upfront to help a kid with DS to make the biggest strides in advancement to help him with the rest of his life.

In later childhood, I can see the importance of having a street system that is safe for walking and biking being especially important for him since he'll probably be walking or biking to school with or without me, my wife, or our daughter. I want him to learn how to be independent to the greatest degree possible, and the ability to get himself from home to somewhere else safely is really important. 

In adulthood, I'm sure that housing, community, and (more) transportation options will be even more important. We have no idea how self-sufficient he will be when he's an adult, so he could need any range of living situations between living in a group home and living self-sufficiently in an apartment or the like. I think that something like an Accessory Dwelling Unit may be a good fit for him in the future, and we have been looking into adding one on top of our garage when we have to replace our garage to maybe have him live in when he "moves out" of the house.

I worry that the insane housing market will be an even bigger hurdle for him since I don't know what kind of income he will be able to attain (even more important to have that "missing middle" housing for him!). Having good community close-by to check on him will be important too, especially if he is on the more self-sufficient end of the spectrum. Either having us close-by to check in (like in a separate but close living option like an ADU) or being in a more actively monitored situation like a group home, he will need people to make sure he's safe, healthy, and keeping up with daily life tasks. In adulthood, he might need to use transit to get to a job since it's unlikely that he'll be able to drive to/from work. 

Dustin: At 6 years old, the things about a city that would most help my daughter thrive are safe streets, neighborhood parks, and inclusive schools.

Dustin and his family

We're fortunate to live in a community with a good street grid, fairly narrow streets and sidewalks. While this doesn't eliminate all speeding, the result is a fairly safe environment. This allows my wife and I to feel comfortable giving our children some independence outside the bounds of our fenced yard. We've recently started allowing my daughter who has Down Syndrome and her 9-year old sister to take our neighbor's dogs for walks around the neighborhood. While to them it's a few minutes of independence from their parents, we hope it is beginning to teach them the value of family and looking out for each other.

Family can be extremely important for people with disabilities, as they may need extra support systems. One day my wife and I won't be around and I'd like to think that even now, these walks around the neighborhood can be an opportunity for my daughters to bond and learn to rely on each other. 

Neighborhood parks play an important role by providing a public space for children to play and interact that is somewhere between playdates at a friends' house and letting my children play freely in the neighborhood. Individuals with Down Syndrome tend to have low muscle tone so my daughter can have difficulty keeping up with the neighborhood kids when they're riding bikes in the street or doing a lot of physical activity. Neighborhood parks, especially those designed to accommodate kids with disabilities, can provide an environment where it's easier for everyone, no matter their ability, to be included.

Being included is something that all parents wish for their children. Setting my daughter and her peers up for a lifetime of being included in a community starts early. As a parent, I see school as more than just academic but also laying the foundation for life after my daughter leaves the school system. School districts that default to segregating students with disabilities are teaching my daughter and her peers that those with disabilities cannot and should not be full participating members of their communities. Infrastructure that doesn't allow people with disabilities to participate fully is sending the same message. 

As my daughter grows older, other factors will become important. My daughter may or may not be able to drive, so access to transit is important. A mix of housing options that allows my daughter to remain in her community at various levels of independence will be important. A first step for her may be an accessory dwelling unit on our property. Or some sort of apartment with friends or shared housing. If she chooses to remain within one community, it would be ideal to have housing choices that allow her to transition from one life situation or level of independence to another.

Rachel: How can strong citizens help create places that are welcoming and accessible to parents and children with DS?

Dean: Honestly, I feel that there is often an underlying stigma between other people and families with DS that is usually not intentional but is mostly implicit in the way many others interact with us. My son isn't super social with other kids and isn't at the same cognition level as other kids his age, so we're often not the ones that get called to go on play dates. There's also kind-of a taboo on talking about DS or disabilities in general...

I think people don't want to point out that my son is different than other kids and thus make us "feel bad," but, because we're unable to talk about the "elephant in the room," we don't get as deep with others as we need to for forming meaningful relationships with others in our community (maybe this is a midwestern passive-aggressive thing... I don't know). I also think that it's harder for others to really get to know our son because they think they don't know how to relate to him.

That being said, here are some ways that strong citizens can help us out:

• Make an effort to get to know the individual and the family. Treat us like any other family, and don't be afraid to ask questions or invest in our lives. Volunteer to babysit and spend time playing with him. If you have kids, arrange a playdate (even if my son doesn't play with your kids, the social interaction is good for him and for his parents!).
• Keep an extra eye open for my son. Not only is it important for his safety but it's really assuring to us as his parents to know that our neighbors love and care about our son.
• If you are a policy-maker or significant policy-influencer, please keep in mind the intended and/or unintended results of your actions on the most vulnerable in our communities. Invite me to be a part of the discussion that your community is having on housing, transportation, urban design, etc. because you may not be aware of the impact that your decisions have on people like my son. 

Dustin: While it is important to recognize that we do need to be specifically considering people with disabilities in our communities, it's just as important to recognize that we all have times in life when we are less able than others. I really like the idea behind Gil Penalosa's non-profit, 8 80 Cities. The idea is that if everything we do in our public spaces is great for an 8 year old and an 80 year old, then it will be great for all people. 

More important than the physical infrastructure is being a welcoming and accepting community. One of the best things strong citizens can do is recognize that diversity is beautiful and makes our communities stronger. Take the extra effort to include traditionally marginalized people in community life, activities and policy-making and teach your children to do the same.

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About the Authors

Dean Chamberlain is a municipal civil engineer working for the City of Red Wing, Minnesota, which is a city of about 17,000 in southeastern Minnesota located in bluff country along the Mississippi River. Dean designs and administers many of the city's municipal street reconstruction projects, and he strives to incorporate improvements to pedestrian and bicycle infrastructure and safety into each of his projects. He is also looking to get more involved in his new community of South St. Paul, Minnesota as a strong citizen, and he is interested in potentially becoming a small-scale developer at some point in the future.

Dustin DeKoekkoek is a civil engineer working on urban transportation projects and a strong citizen of Mountlake Terrace, Washington, a city of around 20,000 a few miles north of Seattle. Dustin recently helped start a non-profit organization called the Mountlake Terrace Community Foundation which exists to strengthen the Mountlake Terrace community. Following the Strong Towns movement over the past 8 years has helped shape the way Dustin thinks about his community, understanding that many of the complex challenges our communities face can be solved from a botton-up approach.