COLUMBUS, Ohio — The therapy-play group for young children with Down syndrome sounds like a good opportunity, so Liasun Hodges plans to take 6-month-old Damani to meet with other parents and kids.
“If I feel like it’s beneficial for my child, I’m going to go,” she said.
Hodges wants to do all she can to help Damani thrive. But the 25-year-old will have to deal with her own unease when she drives across town from her inner-city neighborhood to the gathering in Upper Arlington, where she might be the only mom in the group who’s not white and living in the suburbs.
Having a son or daughter with the genetic condition isn’t the only common ground that matters, Hodges and others know. Support organizations often fall short in reflecting the diversity of Americans with disabilities such as Down syndrome, which is just as likely to occur in blacks as in whites.
“We’ve had some really honest discussions about what we could be doing differently,” said Kari Jones, president and CEO of the Down Syndrome Association of Central Ohio. “We know that Down syndrome doesn’t discriminate. Yet our membership right now is about 5 percent African-American, whereas 25 percent of the community is African-American.”
The local association is among several disability groups nationwide that are trying to do a better job engaging minorities. Connecting with a support and advocacy organization can make a big difference for parents and children, boosting knowledge and access to programs and even helping with health outcomes.
“There’s a lot of research that indicates that minority individuals with intellectual and developmental disabilities aren’t faring as well as whites,” said Peter Berns, CEO of The Arc, the nation’s largest community-based organization advocating for people with developmental disabilities and their families. “There’s more we could all be doing to meet people where they are.”
Support and advocacy organizations can appear unwelcoming to minority families for a variety of reasons, from meeting locations and discussion topics to cultural differences and socioeconomic disparities.
Areva Martin, a California attorney and mother of a son with autism, said most of the families she works with through the Los Angeles-based Special Needs Network report feeling “uncomfortable” participating in mainstream autism and disability-rights organizations. She launched the nonprofit group more than a decade ago to act as a link between underserved communities and advocacy groups and government institutions.
Martin said there are lots of ways for groups to make inroads. “Identify key organizations in minority communities and partner with them to build trust,” she said. “Build stronger bonds with faith-based organizations, particularly black churches.”
Jones, of the local Down syndrome association in Ohio, said there’s a realization “that we have to be more intentional about our outreach. You can’t just think that if you’re hosting something, people are going to automatically come.”
The association has organized meetings and social outings aimed at black, Latino and Somali communities. It also hired Gail Hubert, a parent and long-time volunteer, to head up efforts to reach black families.
“We know that we have a community out there,” Hubert said during a recent meeting at the King Arts Complex on the Near East Side. “We’d like to see more of them in here.”
Andy Shih, senior vice president for public health and inclusion at Autism Speaks, said culturally appropriate tone is important. Families shouldn’t feel guilty for not having participated, or as if something is being imposed on them. “One of the greatest barriers to doing more for these communities is to understand how to make these efforts mutually beneficial,” Shih said.
Hodges has no trouble seeing the value in all that the local Down syndrome association can offer. She loves that she made an early connection after finding out her son had the genetic condition, which affects one of every 792 babies born in the United States.
Damani’s family is loving and close and wants to learn as much as possible about both his needs and abilities. “She’s very enthusiastic about him,” Hodges said of her 8-year-old daughter, Keyara. “Her baby doll has come to life.”
Hodges, who lives in the Milo-Grogan neighborhood and works part time, doesn’t mind heading to other areas of central Ohio for activities. But she would like to see more people like her when she gets there. Hodges said she is multi-racial; Damani’s father is of Puerto Rican descent.
“I can explain my situation to you, and you’re going to have empathy, but you’re never going to quite understand,” she said. “It’s easier to speak up when you know there’s someone who can relate.”
When you’re the only minority in the room, “you sort of subconsciously start to single yourself out,” Hodges said. “You feel different.”
During last month’s Buddy Walk for Down syndrome, an event that drew thousands, Hodges was thrilled to come away with a connection as much for her as Damani. She and a Latino mom hit it off and plan to get together soon.
“We’re making a playdate,” Hodges said with a smile. “Just to talk.”