The Complexities of Living with Spinal Cord Injuries and Disorders: Understanding Accessibility and Daily Challenges

I thought that I should take a moment to share with you folks what I have learned regarding the complexities of spinal cord injuries and disorders.

I work with an organization that advocates on behalf of people with spinal cord injury. Some of our members have been injured in accidents and others have degenerative spinal cord disorders.

Over the past two years I have overseen many webinars where they discuss the various types of issues a person with spinal cord injury or disorder (SCI/D) confronts. As a listener, I have learned quite a bit about SCI/D. The topics we’ve covered range from getting the right type of wheelchair to maintaining sexuality after a spinal cord injury.

I’ve developed a much greater understanding of the daily challenges people with SCI/D face. With that understanding, I’ve come to appreciate how adaptive and creative these individuals must be. When the environment is not designed for you, you have to find ways to make things work. One of my friends said, “We are the original hackers. We have to hack everything because it’s not built for us.”

You see, it’s not as simple as just sitting in a wheelchair. There are many other considerations—from waste removal to skin protection, pain management, transportation, and more. Most of us have no idea how complex this really is. For a long time I thought that if your legs didn’t move, that was it. But I was wrong about what a spinal cord injury entails.

Because of what I’ve learned, I have a great appreciation for what companies like mine and others do to make living with SCI/D more accessible. Some ways to help (beyond donating money) include simply following accessibility parking and other laws designed to make the environment accessible. It might seem like an inconvenience, but it’s important to respect these measures.

For example, consider accessibility parking spots. A common complaint I’ve heard is, “Why is the spot so big? It’s wasted space.” But think about someone with quadriplegia using a motorized chair. They might have a sliding door and a ramp that comes out so they can exit. If a car is parked too close next to theirs, they wouldn’t be able to get out. I hope this helps you understand why those spaces are designed the way they are. There’s much more involved, but that’s one quick example to consider the next time you think about accessibility features.