In 2013, Falk College associate professor of public health, Dr. Katherine McDonald, received a grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, a part of the National Institutes of Health (NIH), to address the pressing need for scientific knowledge to improve the health of persons with intellectual disability.
During the study, an expert panel created a survey administered to 500 people across the U.S. to learn about their views on doing research with adults with an intellectual disability. One of the panel members was Micah Fialka-Feldman, a Syracuse University student, teaching assistant, and staff member. Feldman, who will graduate in May 2015 with a certificate in Disability Studies, helped design the Project ETHICS survey and assisted with recruitment and sharing findings. During the project, McDonald was contacted by documentary filmmaker, Dan Habib, an Emmy-nominated creator of the award-winning documentary films Including Samuel, Who Cares About Kelsey?, Restraint and Seclusion: Hear Our Stories, and many others on disability-related topics.
Habib is the filmmaker at the Institute on Disability (UCEDD) at the University of New Hampshire, and was appointed by President Barack Obama to the President’s Committee for People with Intellectual Disabilities (PCPID) in 2014. Fialka-Feldman also serves on the PCPID, and for the past year, he has been filmed periodically by Habib for an upcoming film with the working title, Intelligent Lives.
As a young boy, the public school system placed Micah in a special education classroom. In first grade, he told his parents, “I want to go in the same door as all my other friends.” After his parents battled extensively with the school district, Micah was included in general education classes through high school. He developed a close circle of friends, had access to supportive technology, and his educators held high expectations for his academic success.
Intelligent Lives explores how segregation of people with intellectual disability became the norm, why this segregation is slowly being dismantled, and how some people with intellectual disability are blazing a bold new path, including Feldman, the film’s central character. Currently in production, Intelligent Lives will be completed by the fall of 2017. Of the film, Fialka-Feldman notes, “Dan’s film will help show people how those with disabilities can do great things.”
“Project ETHICS is community-engaged research. The film is about expanding ideas of intelligence – community-engaged research draws from similar ideas. Rather than trained scientists controlling research, we work hand-in-hand with community members who have lived experience and draw from their expertise to create research questions, methods, dissemination, and action to follow. This way of working legitimizes the value of lived experience, and emphasizes that a broad array of stakeholders can (and should) contribute to research,” explains McDonald, principal investigator for the Project ETHICS study and a faculty fellow at the Burton Blatt Institute (BBI).
On a recent trip to Syracuse, Habib filmed Fialka-Feldman participating in Project ETHICS work. During multiple site visits to campus to film, Habib and his team spent time with Feldman, his friends and colleagues to capture Micah’s vibrant academic, work and social life. The visits include filming Micah at home, working at the SU School of Education, attending his public health class taught by professor of practice, Jim Byrne, and working as part of a discussion group about research findings in Project ETHICS. Habib also filmed Micah’s Circle of Support meeting, which he runs monthly. He invites those he finds provide him with positive support to talk about what is going on in his life, and what is coming. Micah directs the meeting, discussion, and decisions but is open to input from others.
“Project ETHICS is an important element of Micah’s experience at Syracuse,” Habib says. “Like Project ETHICS, this film will help the general public understand the dramatic shifts underway in our understanding intellectual disability. The reality is that if Micah was born in the first half of the 20th century, his IQ score of 40 would have most likely necessitated a life of institutionalization. Fortunately, Micah was born in 1984, and Intelligent Lives will show that we can transform education, employment and human service systems to examine the capabilities of each and every person regardless of appearance, ability to speak and move, or test scores.”
“This film is a key component to challenging dominant cultural narratives about people labeled with intellectual disability. We need films that reflect disability rights, and showcase people with disability leading meaningful lives as caring, capable citizens” says McDonald.
To watch some of Habib’s previous films, go to www.iod.unh.edu/inclusivecommunities