Body
In 1988, Kenneth Jennings broke his neck on the opening kickoff of a Chicago high school football game. He was only 17. He remembers doctors and psychologists talking to him during his lengthy stay at the Rehabilitation Institute of Chicago (RIC), now known as the Shirley Ryan AbilityLab. But no matter how comforting they were, in the end, they walked out of his room, something he would never be able to do as someone with tetraplegia who was paralyzed from the neck down.
Jennings’ injury made national headlines and one day he got a visit from Darryl Stingley, a former professional football player who had broken his neck during an NFL game and also was mobile in a wheelchair. “He was still enjoying life and doing all these different things, and he understood what I was going through,” remembers Jennings. “After that, we built a relationship where he was like my father, friend and mentor. He taught me what it was like to be a man in a wheelchair. I wanted to give back like he gave to me.”
That’s exactly what Jennings is doing as one of roughly 40 “peer mentors” at the Shirley Ryan AbilityLab. The nearly 20-year-old program is run by the hospital’s Henry B. Betts LIFE Center, a multi-media education center and web portal that provides patient education and consumer health information for people with disabilities, their families and health professionals. “The premise of peer mentoring is that having a spinal cord injury is an life-disrupting experience,” says Allen Heinemann, PhD, Director of the Shirley Ryan AbilityLab’s Center for Rehabilitation Outcomes Research. “People want to know ‘How can I live with this?’ People who have been through it can answer questions like ‘How do I get to my doctor’s appointments? Will I be able to have a relationship? How do you do this task or that task?’ The questions range from the mundane to the sublime.”
LIFE Center Manager Lisa Rosen co-founded the peer mentoring program in 2003. There had always been some informal mentoring going on as patients talked with other patients or hospital volunteers with disabilities, but Rosen realized there was a need for a more structured program. “Just because someone has a disability doesn't mean that they will be a good peer mentor,” she says. “Peer mentors provide a patient's perspective. They are living examples of people who have made a successful transition back to the community and are not defined by their disability.”
He taught me what it was like to be a man in a wheelchair. I wanted to give back like he gave to me.
Kenneth Jennings, Peer Mentor at Shirley Ryan AbilityLab
Body
Mentors are recruited, trained and coached by Education Program Manager Cristina Mix, who then connects them with patients who have similar conditions and lifestyles. Those include the range of people treated at the Shirley Ryan AbilityLab including those with spinal cord injuries, traumatic brain injuries, limb loss and stroke. The mentors are trained on how to navigate difficult conversations without advising or prescribing specific things. “Individuals are going through so much and may be overwhelmed and vulnerable,” says Mix. “Through education and peer mentoring, we want to empower people to make their best health-informed choices.”
New patients receive an information packet that includes materials from the LIFE Center. They are told about the peer mentoring program and asked if they are interested. Many people with recent spinal cord injuries are initially very focused on being able to walk again and some say they don’t want to meet with anyone in a wheelchair. “Sometimes a patient isn’t ready, but a family member or friend is,” Mix says.
Peer mentors have many roles in addition to one-on-one visits, which can be either in-person or virtual. They participate in panels and classes for patients on everything from traveling with a disability to being your own advocate. They are also included in an annual lecture to first-year medical students at Northwestern University’s Feinberg School of Medicine, many of whom have never met someone with a disability before.
There is actually a waiting list to become a peer mentor at the Shirley Ryan AbilityLab because so many patients are interested in giving back after they leave the hospital, Mix says. But mentors must have at least two years of experience of living in the community before they are eligible to join the program and go through training. “We want them to have that life experience,” she says. Rosen and Mix coach new mentors on listening skills, how to “read a room” and how to interact with patients in ways that don’t give them false hope or tell them what to do. New mentors are shadowed by Mix during their early sessions and receive feedback on their conversations.
“I’m trying to deliver hope. Life is not over. That’s why I tell them all the things I’m doing in life,” says Jennings, 51, who coaches high school football and lives independently in a Chicago home that the city gave his family after his injury. “I tell my patients they need to become the CEO of their body. They have to take control of their care. I have to hire and fire my caregivers. I have to make sure I have the right supplies and that my house is clean. That’s me taking control.”
I open my life to them.
Jorge Alfaro, Peer Mentor at Shirley Ryan AbilityLab
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Chicagoan Jorge Alfaro has been a peer mentor for 15 years. He was injured by an accidental gunshot at the age of nine, before the peer mentoring program existed. When he was in his teens, he was fitted for a body brace at RIC and introduced to wheelchair competitive sports by an RIC recreational therapist who also used a wheelchair. Alfaro had been doing informal mentoring of people with disabilities for years when he heard about the Shirley Ryan AbilityLab formal peer mentoring program. He knew he wanted to participate.
When Alfaro meets a patient with a spinal cord injury for the first time, he tries to quickly get a read on the person and their lifestyle. “Were they a gang member or were they captain of the football team? You need to think about their confidence level prior to their injury because everyone loses some confidence,” Alfaro says. “I have to do my mental homework. I have about 45 seconds to put it together.”
He lets patients do most of the talking even though some are reticent at first. He answers their questions about personal things like having someone help you with bowel and bladder function, sexual relations after a spinal cord injury and how to deal with phantom pain. “I open my life to them,” he says. “I tell them that people may have to assist you now, but you can still be independent and have freedom of choice. I explain to them how I became a confident person.” In addition to playing adaptive sports himself, Alfaro now coaches a rugby team for people with tetraplegia and runs a junior wheelchair basketball program.
When patients ask if they will ever walk again, Alfaro reframes the conversation. “I tell them ‘I’m about the here and now. Until you’re walking, I’m going to tell you things that aren’t in the pages of a book,” he says. “There’s no nurse button when you go home. I’m going to give you skills you can take home with you.’”
