Many of us will transition out of college and into our career paths. “The Limits of My World,” tells a coming-of-age documentary about Brian Cassano, who is making the transition to adulthood while living with severe autism. The Dodd Human Rights Impact hosted a screening of the documentary followed by a conversation led by the director of the Human Rights Institute, Kathy Libal. Panelists included Heather Cassano, assistant professor in digital media & design, Dianne Bilyak, Connecticut disability rights advocate and Linda Rammler, a research associate at UConn’s Center for Excellence in Developmental Disabilities.
The documentary was directed and told from the perspective of Heather Cassano, Brian’s sister. She explains her brother’s story through thoughts she had while filming and narratives from their childhood together to where he is now. While growing up, Cassano said she realized her experience with Brian was different from other children with siblings and how isolating it is for siblings with autism.
“So, originally it was just going to be about my brother and that quickly became clear that I needed to put myself in it, put my own opinions in it,” Cassano said. “So, I hope by doing that I made it more relatable. So, people who know people with siblings that have autism and other disabilities, to other people who have an easier time relating to Brian, through me as a narrator.”
Bilyak talked about her experience growing up with a sister that has Down syndrome. She said her sister never thought of herself as someone with a disability, but that it was really society that made it look that way. Bilyak said it is due to society’s inaccessibility and failure to bring awareness about people with disabilities.
“I don’t think a lot of people realize that it’s not all a depressing situation, it can be really fun and because we’re the same age and so connected, I’ll say things to her I would say to any sibling or any friend that I have.”Dianne Bilyak, Connecticut Disability Rights Advocate
“I don’t think a lot of people realize that it’s not all a depressing situation, it can be really fun and because we’re the same age and so connected I’ll say things to her I would say to any sibling or any friend that I have,” Bilyak said.
Rammler spoke about developing the “one-page life course profile.” The profile takes a closer look at the individual needs of people with disabilities. Rammler said the chart looks at what individual strengths, preferences, passions, interests and what they don’t like. Based on the documentary, she saw that Brian valued his mother and sister. He liked water and eating what he wanted. From viewing the documentary Brian doesn’t like being misunderstood and she emphasized that people with disabilities should get the right to choose the things they want.
“In our traditional special education system, we often take away people’s right to learn because we make assumptions about what they can learn and those assumptions usually have to do with seeing them [as] incompetent instead of [having an] assumption of competence,” Rammler said. “I think that’s one of the fundamental things in human rights is that we look at people as competent and we try to figure out how we can give them whatever they need to communicate and to show that competence so people can understand.”
Cassano said the more that people get to know the personalities behind a person’s disability, the more society can see them as equal, so they can receive more services and create an overall more inclusive environment.
“I think the more we can personalize stories and the mroe we can get people to understand the different person’s perspective from a different way, the more understanding that promotes.”Heather Cassano, Assistant Professor in Digital Media & Design
“It was very hard to figure out how to tell Brian’s story at first because puberty was really tough for him and it is for a lot of people who have severe autism and from the outside, he could really look like a very violent person,” Cassano said. “My main goal I wanted to build enough character and have the audience understand who he was as a person so that they saw him primarily as the individual Brian Cassano, not as the disability that was causing him to act in a way that he [was] acting toward me and my parents.”
Rammler added the key is to provide a personalized plan for people with disabilities and their families to get the support they need. Bilyak said in a way everyone is a part of this community because we are just temporarily abled. She added we will all experience change in our daily routine as we age. One of the goals Cassano wants to achieve with the documentary is to show people there are other ways to communicate than verbal communication.
“I think the more we can personalize stories and the more we can get people to understand the different person’s perspective from a different way, the more understanding that promotes,” Cassano said. “That’s where the documentary, my chosen art form, is really powerful in that way in making those connections.”