Body
When people wake up in a hospital paralyzed from a spinal cord injury, their world is turned upside down. They are usually in pain and very worried about whether they will ever be able to work again, play sports or function as someone’s sexual partner.
For many patients at Shirley Ryan AbilityLab in Chicago, the first step towards envisioning their new life comes from watching a video series called “Voices of Experience,” produced by Chicagoan Thea Flaum, founder of the Hill Foundation for Families Living with Disabilities together with the Center for Rehabilitation Outcomes Research (CROR) at Shirley Ryan AbilityLab.
The 10-part video series was created with funds from the Midwest Regional Spinal Cord Injury Care System grant to Shirley Ryan AbilityLab. Flaum and Allen Heinemann, PhD, CROR’s Director, brought together clinicians, therapists and people with spinal cord injury to help select subjects that would be of greatest interest to people with new spinal cord injuries. Topics included greatest fears, coping with anger, concerns about sex and dating and handling family relationships. Next, Flaum and her staff combed through their existing video library of interviews of people with spinal cord injury and selected segments related to each topic. These segments were then edited together to produce each video in the series, which are part of the patient education video library at Shirley Ryan AbilityLab. They are also available online at FacingDisability.com.
“At the hospital we do a really good job of teaching patients with spinal cord injury about their medical needs, but people still struggle to adjust to their new normal,” says Lisa Rosen, Manager of the LIFE Center at Shirley Ryan AbilityLab, which provides educational resources for patients, their families and care partners. “The natural tendency is to believe their identity is gone. It’s critical for them to see Thea’s videos so they can see others taking control of their lives and having a good life.”
Flaum spent her 35-year career as an Emmy-winning television producer working for major TV networks including ABC, NBC, PBS and HBO. She created “Sneak Previews,” the popular movie review show, and counted Chicago film critics Roger Ebert and Gene Siskel as friends. When she was thinking about what to do after she retired, Flaum envisioned using her journalism and production skills to help people with disabilities.
Flaum’s adult daughter, Vicki Hill, had been paralyzed after a summer diving accident at age 22. Hill didn’t let her injury stop her college career; she went on to complete a master’s degree in rehabilitation counseling and became a researcher in CROR. Heinemann, met Hill’s mother Thea when she was filming a news piece in the hospital.
Flaum and her husband, Robert Hill, started their nonprofit foundation to help people with spinal cord injuries and their families. “Because spinal cord injuries are relatively rare, most families don’t know anyone else who is paralyzed. It’s isolating and difficult,” says Flaum. “So I thought: ‘What if we did something that dealt with people’s actual life experiences?’ People could go to a website and learn from what other people had gone through. As we say in our family, ‘Nobody knows what you’re going through like somebody who’s already been there.’”
As a former television producer, Flaum thought filmed interviews with people who have been living with spinal cord injury was a great way to share insights, fears, practical tips and hope with people with newly acquired spinal cord injury.
Flaum took her idea to Joanne Smith, MD, CEO of the Rehabilitation Institute of Chicago (which would become Shirley Ryan AbilityLab in 2017) and Henry Betts, MD, Smith’s predecessor and a pioneer in the field of rehabilitation medicine. Both wholeheartedly approved of the concept. Flaum spent the next two years working with rehabilitation hospitals to find people to interview for her videos.
“Thea has a unique combination of lived experience as the parent of a child with a disability and the ability to tell stories through video,” says Heinemann. “Her work has done and continues to do a world of good.”
In addition to the “Voices of Experience” series, FacingDisability.com has more than 2,500 videos of people talking about their experience with paralysis as well as interviews with family, friends and care partners. There are also videos featuring medical experts explaining things like how the spinal cord works and what rehabilitation will look like and about common medical problems that come with spinal cord injuries.
Users can search for videos by age, gender, time since injury and severity of injury. A person with an injury that results in paralysis of all four limbs can sort for videos featuring people with the same condition. “They are not scripted like the answers you get from produced videos,” says Rosen. “You can see the emotions of the people on the videos. It’s real and raw. It’s so liberating to see that these people are normal and just like you.”
More than 40 rehabilitation hospitals run videos from FacingDisability.com on their in-house television networks.
Six years ago, Facing Disability moved into the realm of social media. In its private Facebook group, members can view posts by each other, ask questions and offer advice. The group has more than 5,000 members and is followed by 12,000 people.
Flaum’s work goes beyond video production. She sits on an advisory board for CROR’s Midwest Regional Spinal Cord Injury Care System (MRSCICS) grant and advises on another grant to promote patient-centered care by developing resources for patients and care partners, students, and clinicians to enhance and sustain the use of standardized assessments as part of evidence-based practice.
If there’s one thing Flaum hopes to change in the world, it’s the idea that people who go on to live productive lives after experiencing a disability are the exceptions or somehow superhuman.
“People with spinal cord injuries are just like you and me,” she says. “It’s really important to stop looking at them as heroes when they live successful ordinary lives. It does a disservice to them to think that you need to be extraordinary to overcome this ‘tragedy.’ The main story is there are thousands of people living with a spinal cord injury and they’re living like everyone else.”