March 21st is World Down Syndrome Day. You’ve probably met someone with Down syndrome before or know what Down syndrome is, but how often do you talk to people with Down syndrome? In this week’s episode, Disabilities Beat Reporter Emyle Watkins visits GiGi’s Playhouse in Buffalo, which provides a variety of social activities, classes and resources for people of all ages with Down syndrome. We interview three adults living with Down syndrome who share that the biggest barrier to equity might be the simplest to solve: it’s how we talk to and with people with visible disabilities.
PLAIN LANGUAGE DESCRIPTION: March 21st has been recognized as World Down Syndrome Day since 2012 by the United Nations. Down syndrome is a disability someone is born with because they have an extra (third) copy of the 21st chromosome in their DNA.
Disabilities Beat Reporter Emyle Watkins visited GiGi’s Playhouse, a center for people of all ages who have Down syndrome in Buffalo. The center offers different classes, activities, and resources. Emyle asked three adults with Down syndrome what they feel is the biggest barrier to being included or equal in the world. They shared that people treat them differently than people without visible disabilities, even though they do everything other adults do. Sometimes people talk to them as if they are children or they will talk to the person who is with them instead of them directly.
Emyle and the three guests: Faith Jaromin, Sydney Hanley, and Madisyn Ross, explore some of the ways people with Down syndrome are treated and what changes could better include them in the community. Emyle also explains how history has impacted how people might view and talk to people with disabilities, but that a lot has changed, and this is a good time in history for people to change how they talk to people with visible disabilities. Emyle and the guests also provide practical tips for how to treat people with visible disabilities in a way that is fair and equal.
TRANSCRIPT
Emyle Watkins: Hi, I'm Emyle Watkins, and this is the WBFO Disabilities Beat.
Often when I interview the disability community about the barriers we face, the issues are rooted in policy, finance, the way things are designed, or something that isn't always easy to change. But this week we're focusing on a barrier that is actually quite simple. It's how people with disabilities are treated in everyday conversation.
Tomorrow, March 21st, is World Down Syndrome Day. You might know what Down syndrome is and that people with Down syndrome have three copies of the 21st chromosome. But how many people who have Down syndrome do you talk to regularly?
Earlier this month, I spent the day at GiGi's Playhouse, a center for people with Down syndrome to connect through art, cooking, and fitness classes, as well as receive speech therapy, literacy tutoring, and more. When I started asking people with Down syndrome about the biggest barrier they face, I came to understand it's that people don't take the time to get to know them as people. Some of the adults I spoke to explained that being talked to differently, often in an infantilizing or childlike way, is the biggest barrier.
Faith Jaromin, who works the front desk at GiGi's Playhouse, described it as a weight on her shoulders.
Faith Jaromin: Like a weight has been brought down on the shoulders. It's not a burden, but a barrier for personalities, relationships, like that.
Emyle Watkins: She's 21 and has Down syndrome. She gave me a tour that day and explained to me what makes GiGi's programs distinct is the autonomy and respect people are shown there.
Faith Jaromin: ...any programs we can't find anywhere else we have here.
Emyle Watkins: What are some of the things that you can't find somewhere else?
Faith Jaromin: If you can't find a place where you have to exercise, because a lot of that has to do with the low muscle tone. We focus more on the mission of helping, never talking down, but actually helping with an open hand.
Emyle Watkins: Did you just say instead of talking down?
Faith Jaromin: Yeah, because a lot of people who have Down syndrome, get a lot of people, like grandmothers, like you know...
Emyle Watkins: A lot of people who treat them differently?
Faith Jaromin: Yeah. I would say that.
Emyle Watkins: Jaromin also pointed out that people often have assumptions about Down syndrome that aren't true. Like...
Faith Jaromin: Like they can't speak. They can't hear. They tend to assume. They assume a lot. Well, the saying, "Don't judge a book by its cover." That takes a whole lot of place.
Emyle Watkins: What would you like people to know about living with Down syndrome? Like, what's the truth about Down syndrome?
Faith Jaromin: That it's amazing. You can learn how to cook. You can learn how to paint and draw. As long as you be kind and accepting, you can actually accept the personalities that they [people with Down syndrome] have.
Emyle Watkins: Everyone I met at GiGi's Playhouse was living life like any other adult. Jaromin enjoys her job and likes to read and play Nintendo Switch in her free time.
I also had a long chat with Madisyn Ross and Sydney Hanley, who are both in their mid-20s. Ross is employed and describes herself as an aspiring artist.
Madisyn Ross: I am an aspiring singer-songwriter, producer, and an animator, actress, and stand-up comedian.
Emyle Watkins: And Hanley is currently a student at Hilbert College.
Sydney Hanley: Some of my hobbies that I like to do is bowling. I like swimming, and I really like hanging out with my boyfriend.
Emyle Watkins: We realized the three of us had a lot in common. We talked about dating in our 20s and our favorite coffee orders and a shared love of art and theater. And they pointed out to me, people miss out on connecting like this when they create a barrier by not treating someone with a disability the same as any other adult.
Emyle Watkins: When you go out to plays, Starbucks, and go to events, do you ever feel like people are nervous around you or don't know how to talk to you?
Sydney Hanley: Sometimes, yes.
Madisyn Ross: Also, they don't know how to talk to us. Yeah.
Emyle Watkins: How can they talk to you? What would you like them to come up and say to you?
Madisyn Ross: Well, like "You want to hang out, to have coffee?" And, "All right, let's find out if we have something in common."
Sydney Hanley: That's true.
Emyle Watkins: Jaromin also pointed out that another mistake people make is not talking to someone with a disability directly.
Faith Jaromin: When you see someone with a visible disability spending time with someone who doesn't have a visible disability, you shouldn't assume that that person is a caregiver or that you can't talk to the person with a disability. You should always talk to the person with a disability like anyone else.
Emyle Watkins: Do you wish more people took the time to know you and didn't focus so much on your disability?
Faith Jaromin: Yeah, that would help out a lot actually, because when I was in the hospital, for instance, my PHC, she talked a lot to my mother and not to me. So it's like, that was frustrating.
Emyle Watkins: Something I've learned as a journalist is that we talk about disability and to people with disabilities based on the way we view disability, and often we view disability based on the way we grew up.
People with disabilities have been fighting for equity in the United States for decades, and how we're viewed, described, and talked to by others has been part of that battle.
The last "ugly law", which outlawed visibly disabled people from being in public, was ended in 1973. People with disabilities didn't secure the right to live in the most integrated setting in their community until 1999, when the Olmstead decision was issued. And the US government didn't replace the phrase "mental retardation" with "intellectual disability" in government documents and laws until 2010.
All this to say, most of us have grown up in a world where people with disabilities have been largely segregated physically or by the language we use. But in a time where people with disabilities are now more integrated into our community than ever, one of the biggest barriers might also be the simplest.
Emyle Watkins: How do you wish people treated you?
Madisyn Ross: Like, respect. And you have [to] realize we are an adult and a woman.
Emyle Watkins: So the next time you see someone with Down syndrome or any visible disability, don't talk to the person next to them instead. Don't talk to adults like children. Just talk to people like people.
To listen to the Disabilities Beat segment on demand, view a transcript, and learn more about World Down Syndrome Day, visit our website at wbfo.org. I'm Emyle Watkins, thanks for listening.
