Advocates discuss disability, stigma
CRANBERRY TWP — Disability and stigma were the topics of discussion at an outreach event at Cranberry Public Library hosted by a new countywide advocacy project.
Butler County We Belong screened the documentary “What Are You Thinking?” that encouraged people to look at their stigmatizing behavior and how to change it. After the film, a panel of local advocates discussed the documentary, shared their thoughts and answered questions.
“One of the barriers between people with disabilities and people without is that we may assume we have the answers, but we don't have the right answers,” said Brenda Cole, strategic program development officer for Community Care Connections.
Butler County We Belong is a Pennsylvania Developmental Disabilities Council grant-funded project of Community Care Connections, a disability support organization based in Butler that serves more than 700 people in nine counties, Cole said. The goal of the project is to raise awareness for people in Butler County with disabilities to have the right to live, work and play in their communities.
The discussion panel consisted of Kathy McDonnell from the National Alliance on Mental Illness in Butler; Suzanne and Nicolette Fenello, mother and daughter advocates; Kelsey Bergbigler, an advocate; and Tammy Rose, family information specialist at the Center for Community Resources.
Suzanne Fenello said her experience with special-needs individuals growing up was seeing them segregated completely from the general population, which is the same experience many middle-aged and older people in the audience shared. That changed when she had Nicolette, who has Down syndrome.
“So when I had Nicolette, I wasn't sad for me. I was more sad for her because I thought this was the world she would have to live in,” Suzanne said. “But I learned that there was way more life for her and that we could personally create and set her future.”
Ending stigmas is more than just not saying or thinking blatantly derogatory things. The film pointed out how people often say how inspiring or heroic people with disabilities are for doing everyday tasks.
But this makes people with disabilities feel as though they are being pitied when they are just doing the same things as everyone else like buying groceries or going to the bank, the film explained.
“We aren't people to be pitied. We're people,” said Bergbigler, who was born with muscular dystrophy. “Unless we ask for it specifically, we don't need prayers.”
Some people in the audience of about 20 were worried about trying to be well-intentioned by saying positive things but being misconstrued, while others did not see it as an issue.
Bergbigler tried to clear up the confusion by asking people to think about what they find inspiring.
Is it that the person is doing everyday tasks with a disability or is it that they are actually doing exceptional things, she said.
The group also discussed next steps on how to end stigmas and foster understanding for those with physical, intellectual and mental disabilities. Inclusion and education are both key.
Kate Cala, executive director of East Suburban Citizen Advocacy in Murrysville, said the group just started hosting inclusionary playgroups for young children to expose them to other children who are different from them.
One woman suggested going through some kind of simulation activity or virtual reality simulator that would allow people to experience life as a person with a disability.
Cole said just having conversations with people who are differently abled can help. “I think that change or awareness or knowledge comes through being open to friendship,” she said.
