At the end of September, the nation’s media outlets produced dozens of stories about the latest news in spinal cord injury research: paralyzed people walking again. The University of Louisville and the Mayo Clinic both published papers outlining advancements in epidural stimulation that have allowed three participants with chronic SCI to take steps under their own power.
These studies were the continuation of years of research dating back to 2011, when Reggie Edgerton, Ph.D., designed the first epidural stimulation trial for the Kentucky Spinal Cord Injury Research Center. That trial received significant mainstream media coverage because it was a major break¬through — one of the first times that SCI research moved from the theoretical to the actual. This wasn’t an SCI treatment story about experiments with rats or monkeys that could possibly be used on humans someday. It featured a man with chronic, motor-complete SCI standing under his own power for the first time since his injury.
There have been dozens of subsequent research publications outlining advancements and new types of functional improvement from epidural stimulation. None of them generated the same level of media coverage that the first report had. The September studies changed all that — national newspapers, glossy magazines and online media outlets all had some manner of story outlining these latest epistim findings. “Paralyzed People are Beginning to Walk with a New Kind of Therapy” from The Washington Post or “This Paralyzed Man Can Walk Again Thanks to an Incredible Device” from Men’s Health were typical of the recent headlines.
If you’re trying to catch mainstream media attention, paralyzed people walking again is about the juiciest click bait you’re going to find.
The Misplaced Focus on Walking
Susan Harkema, research director at KSCIRC and one of the studies’ authors, has published a steady stream of research focused on everything from locomotor training’s effect on bowel, bladder and sexual function to epidural stimulation’s effect on blood pressure regulation. After that initial 2011 report, she says reporters always asked the same question: When is someone going to walk?
Harkema says this question is rooted in the nondisabled perception of SCI. “The miracle is that you get up and walk again. … It’s what they think is going to sell, unfortunately.”
Harkema’s point about perception is an important one, especially when looking at mainstream media coverage of disability. This perseveration on walking isn’t just a media problem, it’s a societal problem. The inability to walk is the most visible manifestation of paralysis. It’s why we use wheelchairs, and wheelchairs are not subtle. But for people who have lived with significant, chronic paralysis, walking is often dwarfed by other concerns.
Impaired hand function, blood pressure, sexual function, bowel and bladder dysfunction — these are complications of paralysis that, depending on injury level, dominate our lives far more than an inability to walk. Societal narratives about paralysis focus on walking because those narratives come from a nondisabled perspective. And how would anyone nondisabled know about those issues, unless they have personal experience with SCI?
The Evolving Nature of SCI Research
Up until recently, this myopic focus on walking extended into the research community as well. Kimberly Anderson is a scientist and professor at Case Western Reserve University whose work focuses on bridging the gap between the research community and the spinal cord injury community, as well as translating effective research into clinical treatments. She is also a quadriplegic who, upon starting her post-doctoral research in the early 2000s, wondered why so many SCI researchers focused solely on locomotion. “I wasn’t seeing much research on cervical injury models and hand function, very little on bladder and bowel, and almost zero on sexual function,” she says. “I was talking to a researcher and he said, ‘I agree those things are probably important. But until I see data that says they’re important, I’m going to keep doing what I’m doing.’”
The exchange prompted Anderson to collect that data. In 2004, she published a groundbreaking survey, “Targeting recovery: priorities of the spinal cord-injured population.” The results codified what those with SCI already knew — walking is not at the top of our wish list.
The survey found that for quads, the number one functional priority was increased hand and upper-extremity function. For paras, it was sexual function. Overall, walk¬ing was fourth, behind sexual function, bowel and bladder function, and trunk control.
In the 14 years since that survey was published, more researchers have started coming around. There are a host of studies now focused on improving secondary complications of SCI — transcutaneous stimulation to improve grip strength in quads, magnetic stimulation to restore bladder control, FES implantation to improve bowel function, epidural stimulation as a means of improving cardiovascular function, next generation diaphragm pacing for high quads, and the list goes on.
Of course, walking and lower-extremity function is still a major component of research, but these days scientists like Harkema are taking a broader aim at functional recovery. “We’re really more focused on the whole system,” she says.
Telling Our Stories in the Age of Clickbait
Of course, data may persuade scientists, but autonomic nervous system function isn’t going to generate a viral click storm. A problem with covering disability in the modern media landscape is that dis¬ability is complicated. Telling accurate stories to an audience not familiar with the intricacies of SCI requires explanation and context. Those two commodities are increasingly difficult to find in a media culture that requires writers to deliver stories on a near instantaneous timeline, courting an audience with ever-shortening attention spans.
There is some hope, though. At the end of October, another study was released in the scientific journal Nature. This one came from researchers in Switzerland who also used epidural stimulation, though in a new way, to get a trio of participants with incomplete SCI walking again.
National Geographic covered the study in “New Spinal Cord Therapy Helps Paralyzed Patients Walk Again,” by Emily Mullin. While the headline bends to the public’s focus on walking, the article itself does an excellent job of making the complicated science behind the research understandable to the general public.
Just as importantly, Mullin takes the time to talk to SCI researcher Chet Moritz of the University of Washington to provide perspective on how this specific study relates to the broader research landscape. She also cites Anderson’s 2004 study and gives a quick overview of the other functional priorities of people with spinal cord injuries.
In terms of word count, those additions are a tiny fraction of the total. But in terms of broadening readers’ understanding of a community with which they may have no personal experience — other than admiring a courageous wheelchair user out grocery shopping — they are vitally important.
Nondisabled reporters can tell accurate, informative stories about people living with SCI, but it requires taking the time to delve beyond ingrained narratives. Living with paralysis is about a lot more than an inability to walk. Fortunately, learning about the reality of spinal cord injury isn’t particularly complicated. Just ask us.
• “New Spinal Cord Therapy Helps Paralyzed Patients Walk Again,” nationalgeographic.com/science/2018/10/news-spinal-cord-injuries-walk-again-electrical-stimulation-health/
• “Paralyzed People are Beginning to Walk with a New Kind of Therapy,” washingtonpost.com/health/2018/09/24/paralyzed-people-are-beginning-walk-with-new-kind-therapy/?utm_term=.794391fb830b
• “Three People with Spinal Cord Injuries Regain Control of Their Leg Muscles,” nature.com/articles/d41586-018-07251-x