Spotlight on Neurodivergence: Jason McClure and Invisible Disabilities
Walking into his home, I’m welcomed with a vibrant display of artwork. Paintings line the walls, all of them, abstract and colourful, as if inspired by Picasso. With its airy windows and abundance of plants, Jason’s home is bright and welcoming though his life is not an apt reflection of this. As a neurodivergent individual, navigating society and the healthcare system was unnecessarily difficult. All because no one truly took the time to listen.
So this is Jason McClure’s story.
Jason suffered from a brain bleed and skull fracture when four years old. His parents were told Jason would remain in a vegetative state for the rest of his life. Yet he defied the odds. Today, Jason lives with frontal lobe syndrome. To doctors, this means the front part of his brain is damaged, leading to impaired function. To Jason, this means living with partial paralysis on his right side, blindness in the right eye, and deafness in the right ear.
Despite his promising recovery, navigating life as a neurodivergent individual has been anything but easy. As Jason likes to put it, “Living with an invisible handicap has never been like a bed of roses.” Growing up, Jason spent a year at the Glenrose Rehabilitation Hospital from 1977-1978. Surrounded by other neurodivergent children, Jason felt supported. His own experiences were reflected in those around him with an unspoken understanding of what it’s like to have your life inexplicably changed. But the real world was a different matter altogether. School was challenging for Jason and he was bullied. Unable to play sports due to his condition, Jason had difficulty fitting in. Watching movies and music became his solace. Today, his home is a myriad of memorabilia, his most impressive being Gene Simmons’ signed bass guitar. His home is an homage to Kiss and The Terminator but more importantly, it is an homage to a childhood that was denied to him.
As an adult, things did not improve much. Society often viewed Jason’s experiences as untrue. “People make the mistake of thinking they know everything based on what their eyes are telling them,” says Jason. Without a wheelchair, walker, or any other visible sign of disability, Jason is often mistaken as a neurotypical individual. To make matters worse, Jason has a hard time articulating his thoughts. When he does try to explain his disability, people are not patient with him, simply don’t understand, or just assume he’s lying. Jason recounts that “His words were falling on deaf ears.”
However, within the medical community, Jason faces a different problem. From his experience, especially in childhood and early adulthood, physicians would treat him straight from the textbook, pigeonholing him into standardized cases and symptoms, rather than treating him as someone with a unique form of a disease. He says to “... not assume you know everything about a patient solely based on their condition. As there are billions of neurons and connections in the human brain, there can also be a variety of potential outcomes which may occur in different people suffering from the same affliction.” It’s integral to remember that every patient’s case is different, influenced by their childhood, daily habits, and favourite foods. Only if we truly know the inner workings of our patients will we truly be able to treat them.
No matter who Jason interacts with, he’s always got the short end of the stick. With society, he is assumed to be like the average population. In the healthcare system, he is assumed to be like every other patient. Despite this, Jason is a resilient and friendly individual, always looking at the bright side of things and quick with a smile. Given Jason’s experiences though, it is difficult not to feel frustrated. He is a testament to how our current society functions not to empower neurodivergence, but to silence it. However, organizations within Edmonton are currently working towards creating a safe community for neurodivergent individuals. The Brain Care Centre is one such organization, a non-profit Jason is a client of. Yet change can be slow but we, as future physicians, can accelerate it.
While visiting Jason, I asked him what he would like to see from the future generation of physicians. Overall, he hopes we will be active listeners. “There are so many people today that are saying our healthcare system is broken. But I say you can change that.” Listening to patients will allow us to know the stigma, the bias, and the prejudice lodged within the system. Only if we listen will we be able to identify key problems and implement meaningful solutions. Even outside of this, listening can create better patient-centred care. After all, as physicians, we cannot take care of our patients’ most intimate needs during some of their most trying and heartbreaking times without actively listening.
