As an SCI researcher and a person with a spinal cord injury, Alexander “Sasha” Rabchevsky sees “both sides of the story” when asked to reflect on how SCI research has evolved over the past three decades. He’s learned his unique position can be an advantage and a source of frustration, but he is dedicated to improving the quality of life of his fellow wheelers.
Passion for Science
Rabchevsky, 52, has been a research scientist and a professor of physiology at the University of Kentucky since 1997. A T5 spinal cord injury between his sophomore and junior years in college set him on the path to his career. He wasn’t focused solely on a cure, but says, “If there isn’t a cure for spinal cord injury, I want to be in a room of authoritative people and have them tell me why not.”
With that in mind, Rabchevsky headed for medical school and chose the research route instead of working to be a practicing physician. “I felt like I’d help more people by doing research,” he says.
Today, Rabchevsky teaches medical, graduate and undergraduate students, with a focus on neurophysiology and neuroendocrinology. Most of his research is SCI-related, much of it using rat and mouse SCI models. He carries out experiments to improve ambulation, but is more passionate about his research that could improve day-to-day quality of life for people with SCI, focusing in particular on spasticity and autonomic dysreflexia. “While we’re waiting for a cure to walk or use our hands, I want to be able to pee and poop and have sex,” he says. He focuses on autonomic dysfunctions, including unregulated cardiovascular and metabolic syndromes that frequently develop with a sedentary lifestyle.
He thinks the research community’s focus on a “cortically driven” approach to regaining volitional, complex movements may have diverted attention and funding from proven approaches that could help people with SCI do more. One such area is functional electric stimulation. Rabchevsky has been a vocal advocate for FES implants since 2002, when he received one that enabled him to stand up with a walker and ambulate — albeit with strenuous effort.
“We could’ve been improving upon the FES put into me 16 years ago!” he says. “I know I’m an anomaly, but I often wonder why the heck aren’t there more SCI folks being implanted with upgrades?”
“If government and private foundations had spent significant money — like that directed to the stem cell research field or other more ‘sexy’ genetic approaches — into technologies to improve FES that have already been proven to work functionally, then I think that researchers might not be so hastened to develop ‘usable’ exoskeletons,” he says. “Everybody who is willing to work hard to get a known functional outcome would be getting FES implants.”
As you can probably tell, Rabchevsky isn’t shy about sharing his two cents. He takes pride in representing the SCI community as the lone wheelchair user in many scientific discussions and is aware that makes some audiences more receptive to his ideas and thoughts.
“Sometimes I think I get the benefit of the doubt because I am a wheelchair user,” he says. “But I also claim that I don’t know the answers. There are a lot of times when I’ll scrutinize other people’s plans and they’ll say, ‘Well, if you know, why don’t you tell us?’ My response is, ‘I’m not saying I know. I just know that’s not right.’”
Rabchevsky’s efforts to educate the general public about SCI and to involve advocates with SCI go beyond his research and professional role. In addition to his work with No Barriers USA (see sidebar), he co-founded the Kentucky Congress on SCI, and works with a nonprofit called Independence Place Kentucky that helps get people with disabilities back into society and into the workforce.
To the Summit, and Beyond
“In 2007, I went through a divorce and was depressed as I prepared to go to the second No Barriers Summit at Squaw Valley, and I asked myself, ‘What in the hell am I doing here with all these incredible adventurers who’ve lost limbs and even sight?’
Within a day of being there, it changed my life. I was climbing mountains. I scaled a 100-foot cliff. I got to go geocaching … I bought what No Barriers was selling hook, line and sinker.
I fell in love with these folks. They were a fledgling organization, basically, with testosterone-laden guys with disabilities who were doing amazingly crazy things. I joined the group and it became like family.
I’m excited about this year’s summit, October 5-6 in New York City. It’s the first time we’ve had it in a big city, and that presents a whole new set of opportunities … and obstacles.
Any time there’s a crisis regarding accessibility, I’m one of the guys the board or staff calls. It’s not like I have all the answers, but, as a wheelchair user, I do have a history of being able to work through things.”
I take a very low dose of oxycodone under medical supervision to help relax my bowels so that I don’t have to go every day, which also affects bladder spasticity.
Can’t Live Without:
No Barriers co-founder Mark Wellman’s adaptive climbing aids are so incredible that even if you’re not a climber, with some innovative rigs and nondisabled friends you can tackle some of the craziest sheer rocks.
Craziest Thing I’ve Done:
Myself, another para, a man with no arms and blind adventurer took chairlifts up a mountain and “rolled” down an incredibly steep trail of switchbacks in order to go 30 mph down a 3,000-foot Alpine slide in Winter Park, Colorado.
Why I Joined United Spinal Association:
Rabchevsky is a new member of United Spinal, but has crossed paths with the organization in many endeavors, including his work with the National Spinal Cord Injury Consortium, of which United Spinal is a member. “So, in a way, I am intimate with United Spinal,” he says.