I can speak | Guest blogger Joel Vander Molen

Posted by Reeve Staff in Daily Dose on May 23, 2018 # Mobility

As a C2/3 vent dependent quadriplegic, I use a lot of equipment to get around, such as my chin-controlled chair and breathing aides. When most people see me, it is hard to get around everything and just notice me. When injured at age three, I didn’t notice as adults, teachers, doctors, and nurses, talked to whoever was with me instead of me. As I got older, I started to notice that some of those I interacted with weren’t always sure how to respond.

One the first reactions I remember was in first grade while my class was working on addition with a substitute teacher. The instructor handed out two dice to each student with the instructions to flip them and add the numbers. When she came to me, she said, “I’m sorry you can’t participate in the activity.”

I quickly corrected her thinking by taking my mouth stick, pushing down on the edge of a cube, and watched it flip. My nurse often had to retrieve them from the floor, but I could participate just like my classmates.

Eating in restaurants is a common area to get unsure reactions. The summer before my senior year of high school, my family, a couple friends, and I took Amtrak from our home in Iowa out to the Seattle area and then on to Sacramento. We stayed in the small town of Skykomish, WA and in the morning went for breakfast at the one restaurant in town.

As I looked over the menu options, the waitress came to take our group’s drink orders. She took my parents’ selection and then, talking to mom, pointed in my direction and asked, “Does he drink water?” I’m generally good at sarcastic replies to odd questions, but I wasn’t prepared for this one. I simply and quickly replied with my order. Every time she returned, questions were asked directly. She had learned to see me instead of everything I use, and that do drink water.

Teachers and small-town restaurants aren’t the only people that are surprised at what a high-level quadriplegic can do though. It would seem that medical doctors would know how to work with someone like myself, but it’s rarely the case. Having a caregiver with me at all times, some nurses and physicians want to talk to them instead of me. It isn’t uncommon for me to only see the side of the doctor’s face as he asks how I am doing and what brought me in. When training caregivers, I make sure that when speaks to them and not to me, they don’t say anything and that I’m the one responding. Now in my 33rd-year post injury, I am prepared for almost any reaction.

In 2004, I saw where my former grade school did a disability awareness segment for second graders by watching a video. A few inquiries later, I replaced the video with my live demonstration. Showing students how I get around just by moving my chin and writing with a pen in my mouth helped them experience a new perspective. As I gained a few years’ experience in working with the kids, I visited more grade schools in my area with the same message.

Children tend to learn quickly and by the end of my time with them, they see me as Joel instead of all my medical stuff. I may do things a little differently, but in the end, it accomplishes the same goal. Unfortunately, adults, including those in the medical field, don’t always learn as well.

I reached out to a few local colleges that offer majors in the medical field. I emailed different department heads wondering if I would hear back from any of them. I was eventually asked to come speak to Physical Therapy, Occupational Therapy, Respiratory Therapy, and EMS students. I visit with these classes annually and hear back from instructors that coming to work with the students has been eye-opening.

Living as a high-level quadriplegic, relying on mechanical ventilation, and on caregivers for every physical need has its challenges. With these, I am able to live the life I have been given and continue to be active. I’m thankful that I am able to work to change perceptions and hope to have a lasting influence for years to come.

Joel is a certified peer mentor with the Christopher & Dana Reeve Foundation's Peer & Family support program.

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.