Changing the Conversation about Intellectual and Developmental Disabilities in the Community
When it comes to creating a true sense of community for children with intellectual and developmental disabilities (ID/DD) and their families, "the movement is only as strong as who we involve in it and lift up." So says Anna Perng, who speaks from a lifetime of experience.
All of which she brought as a parent partner on a PCORI-funded project aimed at breaking down barriers to community participation for people with ID/DD.
Perng is a first-generation Asian American who grew up at a time in New Jersey, when she attended school with few others of her same ethnic background and when students with disabilities were segregated away from general education students, and received little support or recognition.
She had selective mutism, an anxiety-based disorder, preventing children from speaking in certain settings, often at school. Many assumed she was just a shy girl, but her English teacher recognized that something more was impeding Perng’s ability. She recruited a retired speech and language pathologist to help Perng build her skills. When they finished working together, Perng delivered a speech in front of her classmates—a life-changing moment.
Perng grew up to use her voice in the Obama administration and as a community activist helping immigrant families who have children with disabilities. She helps linguistically isolated families in Philadelphia’s Chinatown and Greater Philadelphia understand their children’s civil rights and how to obtain support services.
“Some of my personal experiences have informed my work on language access, intersections between race and disability, and how we perceive people as being deserving of support and who we consider as having potential,” said Perng, who founded the Chinatown Disability Advocacy Project. “My experience, along with my children, has given me a more layered look at how people are accessing their world.”
Her sons have autism spectrum disorder, a developmental disability that can cause communication, behavioral, and social challenges. Her youngest uses an alternative method of communication and has apraxia of speech—a neurological disorder affecting his ability to create words. Her oldest communicates verbally and has attention deficit hyperactivity disorder.
About the Engagement Project
Participation and Intellectual and Developmental Disabilities
Project Lead: Tracy Jirikowic, PhD, OTR/L
What was the project's goal?
To build a regional and national network of stakeholder communities to identify research priorities for future comparative effectiveness research, addressing barriers to community participation for people with ID/DD and their families.
What types of individuals were a part of the stakeholder communities?
Occupational therapists, parents, self-advocates, adults who have ID/DD, researchers, and community organization representatives in the northwestern, northeastern, and southeastern United States.
What were the project's results?
Six stakeholder-identified research priorities for addressing barriers to community participation, a website, and stakeholder training videos for understanding the research process.
*PCORI uses the acronym IDD to represent the same concept ID/DD represents in this project.
Taking an Insider's View
Building a coalition to improve life for those affected by ID/DD requires insight into the needs and challenges people face.
“I remember when my older son was diagnosed in 2013. There were very few resources, and we had to find ways to navigate new systems and services,” she recalled.
It sparked her idea to organize an autism 101 workshop at a community health clinic with support from Roger Ideishi, JD, OT/L, and other community leaders. Their goal: provide families knowledge in a culturally safe environment and reduce disability’s stigma. More than 50 parents attended. The second workshop’s turnout outgrew its venue. Soon, service providers began referring families to Perng for help.
“The project and PCORI really excited me because they brought together a broader community of folks that might not interact and put them in touch with researchers who might not have considered community engagement so essential,” said Perng, the project’s Senior Advisor on Diversity, Equity, and Inclusion, who participated in Philadelphia’s meeting and the information access workgroup.
She helped inform Engage All Abilities, a website designed for people with disabilities to learn about the project, programming, and building research partnerships.
“We face incredible pressures, challenges, and setbacks, and it’s not always just because of our disabilities,” Perng said. “It’s because the world is not designed for us, and so, we’re constantly having to educate and advocate.”
Finding Answers Late in Life
It’s a sentiment Robert Smythe shares. He led the PCORI-funded project’s community stakeholder meetings across the country. A role he was destined to play given his background.
Smythe is a world-renowned theater artist who has won prestigious fellowships from the Guggenheim Foundation, Pew Charitable Trusts, and the National Endowment for the Arts. In 1985, he founded Mum Puppettheatre—emphasis on the word mum, as performances were primarily word free.
“I wanted to be able to go anywhere in the world and have everybody understand me,” said Smythe, the project’s Lead Community Engagement Coordinator.
Being understood is something that has frustrated Smythe throughout his life. While people often say he expresses himself eloquently, he sometimes finds others can’t follow what he thinks is clear thinking. After years of frustration, hearing a radio interview with someone diagnosed with autism as an adult led him to seek answers of his own from a psychologist specializing in social disorders.
At 50 years old, Smythe learned he is autistic. “It explained a lot,” he says.
When asked to be the Lead Community Engagement Coordinator for the project’s community meetings, he thought his late diagnosis made him unqualified. However, he realized that he had, indeed, lived his life with autism, and his perspective and comfort in front of live audiences could make a difference to stakeholders.
“I could stand up in front of a group and say, 'I'm autistic too, so I’m not talking at you, I’m talking with you,” he reflected.
Smythe developed a passion for connecting underserved audiences with theater performances after finding that Mum’s wordless approach was a natural fit for deaf audiences. Joining a project focused on increasing participation was a no-brainer.
Thinking Done Differently
Smythe fostered this vision in facilitating conversations with Perng and other stakeholders.
“In a room full of PhDs and caregiver families, I wanted to make sure that everyone felt they had important, relevant experiences and weren’t afraid to talk about that. We wanted to hear from everyone, especially those who live with autism every day,” Smythe recalled.
At meetings, families described frustrating experiences with organizations either assuming they didn’t know what they needed or that they knew what the ID/DD community wanted without consulting them.
Opportunities sometimes did not match their descriptions. For example, theaters offering sensory-friendly performances, but only once a year or with limited time options. Also, some places didn’t provide refunds or rescheduling—something parents needed with life’s unpredictability.
The Many Faces of Robert Smythe on Stage
Parents wanted venues offering flexibility and more opportunities for family engagement. Stakeholders also raised the issue of whether a diagnosis is necessary to receive services because the terminology defining conditions doesn’t apply to everyone.
Finally, many expressed the need to change the perception of ID/DD. Every person is different. Look at Perng’s children and Smythe. All have autism but face very different challenges.
“I think what’s really powerful about the PCORI-funded project is the idea that anyone can do this work,” Perng said. “You don’t need a doctorate. Having lived experience and valuing equity and accessibility makes you qualified to be engaged in and advocating for inclusion.”
More About this Story
Editor's note: PCORI has launched a series of stories to highlight its funded work in intellectual and developmental disabilities research, one of its new research priorities. In this story, we spotlight a self-advocate and a parent behind a PCORI-funded Engagement Award project, who also have made strides in their own communities to increase participation for individuals with intellectual and developmental disabilities and their families.
To learn more about the PCORI-funded project, its outcomes, and the researcher who spearheaded the work, see our first story in the series.
What Lies Ahead
The project has ended, but Perng’s and Smythe’s work is far from over.
Perng applied inclusion as a wellness indicator to Philadelphia’s Fashion District, training retailers to become more disability inclusive for shoppers and in hiring employees.
“We are trying to transform this perception that only government facilities need to think about accessibility. Rather, any place open to the public does because people with disabilities are in every neighborhood,” Perng said.
While her efforts to change the conversation about ID/DD remain local, Smythe’s have turned global.
He is working with the Brazilian artist and Instagram sensation Rafael Mantesso on a documentary about life with autism. Both men went undiagnosed well into adulthood.
“It’s very lonely to be someone who has this kind of difference or to take care of or be closely associated with it. It can have crippling effects on siblings and other family members because they can’t go out and do things regularly like other families can,” Smythe explained. “Since so-called normalcy is extremely difficult to achieve, people tend to withdraw and not become part of the fabric of society. This means others don’t have a chance to understand and appreciate their differences.”
By Melissa Schenkman, Writer and Editor
Posted: November 13, 2020; Updated: March 2021