To find victory, our collective voice must be loud and united

Posted by Reeve Staff in Life After Paralysis on June 22, 2020 # Research

By guest blogger Dinesh Palipana

I sustained a spinal cord injury in 2010. Since that time, I’ve met a lot of people with different views on spinal cord injury research. Many have lost faith. I understand why. In my own journey, I had experiences that tested my trust in the world of research.Dinesh

Not long after my accident, I met someone from the United Kingdom who claimed to be a neurologist. The well-dressed, well-spoken man told me that he was developing a brain-spinal cord prosthesis that would bypass the injury and restore function. He had a website that listed a raft of honors, awards, and qualifications. I was a medical student at the time and asked some questions about spinal cord physiology surrounding what he was proposing. That's when I started to see the holes. The guy had no idea how to answer my questions. What's more, he asked me for $500,000 to participate in the trial. When I investigated further, he turned out to be a conman who’d taken money from retirees in the United Kingdom. He was known to the police.

I kept looking. Animal trials happened. Human trials happened. I emailed researchers. More often than not, I got a cookie-cutter response.

Being a medical student, some scientists made the time to talk to me in person. I found some of these conversations to be paternalistic. I once spoke to a researcher investigating olfactory ensheathing cell transplants for recovery. This researcher told me that the team is cautious because harvesting olfactory cells can cause a partial loss of smell. A loss of smell they feared would cause depression. One may also not be able to smell things like a fire efficiently.

Our conversation became heated at that point because I suggested that a loss of mobility can cause depression. In fact, it’s one of the most common comorbidities after a spinal cord injury. What's more, one cannot run away from a fire without sufficient mobility.

While I was in the United States as an exchange clerk, a couple of professors made time to have a chat with me. One professor took me in and began to grow my interest in spinal cord injury research. My conversations with him were some of the most intellectually stimulating ones I’ve had in my whole life.Dr. Dinesh Palipana

I later finished medical school and became a doctor. I was thrusted into a position where I found the ability to take control of research that would one day benefit you and me. Today, I lead promising spinal cord injury research alongside passionate collaborators using brain-computer interfaces, electrical stimulation, and drug therapy.

Still, I’m saddened to see the politics in academia. I see the egos. I see the reluctance to collaborate. All this hinders progress.

We are at a time when a working therapy to restore spinal cord injury is not only possible but is emerging from science. But, we as a community of people with spinal cord injuries must be unified in our push for a working therapy. Our collective voice must reverberate through the scientific world. We must encourage spinal cord injury researchers to collaborate and pool their resources. To whatever extent we can, it's time for all of us to take ownership. We’ve waited too long.

George Bernard Shaw said that, “The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore, all progress depends on the unreasonable man.” Let us be unreasonable together. One day, I hope to stand with you to celebrate the different world that we create.

Dinesh was the first quadriplegic medical intern in Queensland, and the second person to graduate medical school with quadriplegia in Australia.

Dinesh is a senior resident in the emergency department at the Gold Coast University Hospital. He is a lecturer at the Griffith University with research interests in spinal cord injury.

Dinesh was awarded the Medal of the Order of Australia in 2019. He was the third Australian to receive a Henry Viscardi Achievement Award.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.