Recently I had the privilege of speaking at a two-day get together hosted by the United Brachial Plexus Injury Network in Lake George, New York. I was invited to provide a presentation on ADA issues which affect this particular group of people, of which I am a member, and to speak about what I have been able to achieve in my athletic career in Para Cycling. I have met and have several friends with BP injuries, but I had only interacted with these people one-on-one until attending this function. It was eye opening to meet so many people with similar injuries, representing the full spectrum of how a BP injury can affect a person. I was able to bond with several people about similar interests and life experiences that very few people can sympathize with. There were many break-out sessions available which were excellent, however one in particular left a very bad taste in my mouth.
I attended a presentation by an occupational therapist which was titled Lifetime Exercises for Teenagers and Adults. The agenda for the session was how to overcome limited ability of the injured arm to achieve full function. While on the surface that doesn’t sound too bad, this presenter took the wrong approach, in my opinion. Don’t get me wrong, I truly believe with my type of disability, there is room for improvement with dedication, tenacity, and determination. Through pursuing high performance, I have been able to attain certain levels of functions I have never had in my life. These are mostly very small tasks, things like being able to touch the hair on my head, but it’s a big deal to me. However, based on my experience, there is no way my arm will ever do 100% of what my good arm is capable of.
I will not name this presenter, but her premise was that since it takes nerves 12-18 months to heal, all our nerve damage was healed since we were toddlers, and any difficulty we have currently with our injured arms is simply a brain mapping issue. She said that recovery can be 100% for all of us. Now, I respect that this person has been working for 45 years in occupational therapy. I respect that she has a lot of experience working with people with BP injuries. However, I do not respect her opinion on the nature of my disability, given she has never experienced what I experience daily since I was born. Her implication was that none of us ever worked on physical therapy long enough. We never paid enough attention to how to perform PT exercises properly. That the experiences of physical limitations we have grown up with has always been more or less in our heads. The paralyzed muscles that I can’t feel are fine. The nerve trigger point in my neck where my nerves were damaged doesn’t exist. The fatigue my injured arm encounters no matter how years I work through physical therapy is probably because I do it wrong.
As a Paralympic athlete, it is my job to push my body to it’s limits. My arm is the single biggest limiter to high performance in my best race on the bike. I lack the strength and stability of my upper body to get out of the start gate as quick as someone who is able-bodied. Much of my training in the gym is focused on trying to squeeze every last drop of function out my injured arm that is possible. I want my injured arm to become the Olympic ideal of what a partially paralyzed arm is capable of. My arm will never be 100% better, but it can be better than it is.
The purpose of this rant is that I would encourage anyone with a disability of any form to respect the insight of a medical professional, but never allow anyone to deny your own life experiences. No one knows what you go through better than you do. This Occupational Therapist certainly had good intentions, but her philosophy only served to invalidate my life experience. From that point, I had no faith in her method. Empathy is on the decline in our society. Any amount of empathy a person can exercise will go a very long way to the people who receive it. If you happen to be a medical professional reading this, my advice would be to take an honest stock of your ego. To consider that maybe you don’t know exactly what your clients or patients are going through.
It must be understood that no matter how well anyone with a disability navigates life, we all have a stock of traumatic experiences. To undermine those experiences is plainly insulting. Sometimes ignorance or arrogance can feel like a personal attack. My hope is that empathy makes a return to mainstream culture, and that those with disabilities value their experiences more than the comments of others.