My experience with disabilities started with my family. My grandmother had cataracts, macular degeneration, rheumatoid arthritis from age 70, and two full hip replacements at age 89 and 91. My family, however, never used the word disability to describe her. I actually didn’t make the connection that she had a disability until I was writing this. Disabilities simply were not talked about in my family. Since the topic was not interpreted for me, I accepted a mixture of what I learned in school, what I learned from my peers, and what I observed in the culture around me. These three teachers were not experts and provided a very one-sided perspective. This past year, however, I have had the opportunity to learn from an expert on disabilities, my Community Health Mentor, Dan* (name changed to protect privacy). Dan expanded my perspective on disabilities in three major ways.
First, Dan taught me it is important to go beyond what we see on the outside. Dan contracted polio weeks before attending college on a wrestling scholarship. When my CHMP (Community Health Mentor Program) group met him for the first time, he was in a recliner at an assisted living facility and was unable to move his arms due to post-polio syndrome. On the outside, this is the picture of someone who is dependent on others due to his condition. During that first meeting, Dan showed us that his left supinator muscle was active. Many years prior, Dan and his wife (who has a PhD in nursing) figured out that if he crossed his arms while holding a spoon in one hand, he could flex his supinator and raise the spoon toward his mouth. They had found a way for Dan to participate in feeding himself, thereby making him more independent. As an occupational therapist, I thought this was a fantastic solution to the problem of not being able to feed oneself. It’s easy to see people with complex conditions as needing assistance with all daily activities. However, Dan was able to figure out a way to participate in eating without most of the muscles of his upper extremity. When I looked beyond the surface, he didn’t need as much assistance as it seemed.
There was more to Dan than met the eye. Actually, there was much more. Each visit, my group would sit in his room while Dan blew us away with his stories. Dan had something to say and we were eager to listen. I learned from Dan that simple advocacy can help skilled but overlooked individuals bring their voices to the table.
Dan pursued a career in engineering, earning a master’s and then a PhD. He casually told us how he became a Dean in the 1980s before The Americans with Disabilities Act was in place. He shared the story of how he spearheaded access for people with disabilities on campus by petitioning the school and being awarded government funding. Dan was an advocate. His institution became the first school in his state to be accessible. Dan was in a place of influence and used that position to advocate for others. Dan himself had an advocate in his wife. Being soft-spoken, Dan shared that his wife spoke up for him and also encouraged him to speak up for himself. Our mentor was brought to the table by an advocate and then advocated to bring others to the table through his work at the college.
The stories didn’t stop there. In fact, the third thing I learned from Dan is that the human spirit is limitless. In addition to teaching and working as the Dean at two other schools, he worked in the local government, city council, and then became mayor. He taught himself to ski without the use of his arms. He figured out how to drive with his feet without a driving coach by using an adapted vehicle. He learned to use a computer with a foot mouse. He was able to dress himself independently until recently. At our last meeting, Dan shared that one of his most important accomplishments was to help found and serve on the board of a hospice, helping people to experience dignity at the end of their lives.
Dan told us these stories over many months in his humble, quiet way as if he was telling us what he had for lunch. Even though Dan may have downplayed his accomplishments, I know that post-polio syndrome has made his journey through life challenging. Disabilities are frequently seen as something that causes suffering in those they inflict. While the specifics of that idea are better explored elsewhere, I want to point out that challenges in our lives force us to either persevere or stop moving forward. If we endure through these challenges, our character is developed which can create a platform that allows us to have hope. That hope, throughout challenges that we will inevitably face, allows us to look past surface appearances, advocate to bring others to the table and follow our limitless human spirit to its innovative ends. I’m thankful that Dan exemplified this hope to my team.
Theo Davis is an Occupational Therapy Doctoral student at Northern Arizona University at the Phoenix Biomedical campus. He graduated from the University of Arizona with a BA in Near Eastern Studies. His academic interests include healthcare policy and motivational interviewing. In his free time, he enjoys eating and cooking and traveling to other countries where he can eat other's cooking. Feel free to contact him at ted35@nau.edu with any questions.