Her words stung with such intensity that I felt like I had just done battle with a porcupine.
On that Saturday several years ago, I had some errands to run out of town, so after the regular morning routine of getting me out of bed, getting into my wheelchair and getting dressed, my caregiver and I set out. The errands didn’t take very long and to be honest, I don’t even remember the specifics of what they were. We decided to stop for lunch before we headed home, and my mind was focused on the cheeseburger and fries I anticipated as we entered the restaurant and waited to be seated.
When the hostess came over, she took one look at me and then directed her question to my caregiver. “Do you need a children’s menu for her?”
I was stunned into silence for several seconds, trying to absorb the shock as a billion thoughts ran through my head. “Why does she think I can’t understand her? Doesn’t she know how patronizing her question is? I am 46 years old. My wheelchair does not whittle away my age. Why does she think my disability gives her permission to dismiss me?
My poor caregiver didn’t know what to do, and her eyes, wide with disbelief and almost desperate for help, met mine. Eventually, I said, “no thanks, I am pretty hungry. I think your adult portion of whatever I order will be just fine.”
After we were seated, several attempts at polite conversation were made over what was to me a bland salad and a dry burger. My caregiver tried to steer my attention away from what had just occurred, but my heart simply wasn’t in it. I couldn’t figure out why, with all my accomplishments and education, this hostess thought that it was okay, even appropriate to assume that I was a child. I knew one thing for sure. That hostess probably didn’t give the conversation another thought. However, my thoughts about the experience didn’t end when I went to bed that night. In fact, the exchange would turn over in my head like a Mexican jumping bean on steroids dozens of times in the days and weeks to come. It wasn’t the first time that somebody had been unintentionally offensive because of my disability, and I was certain it wouldn’t be the last. So, I knew that I had to figure out how I was going to cope with the ignorance of others, no matter how unintentional it may be.
A few weeks later the phone rang. My friend Andrea had a request. “Do you want to come and speak to my daughter’s girl scout troupe? They are learning some things about disability issues and I thought you would be the perfect guest speaker.”
Some fear found its way to my belly as soon as I heard the words. “I can’t do that,” I said quickly and unequivocally. “These are kids. I don’t speak kid and I am not around them enough to know how to keep them interested in anything I talk about. I am way better with adults. They are much more my speed. I appreciate the invitation, but I would be too scared that I would screw something up. “Andrea laughed and encouraged me to think about it, but the discomfort I felt at the thought of talking to kids did not disappear.
That afternoon, the epiphany came. That is, most people are clumsy about people and things that they are unfamiliar with. I had just proven, in my conversation with Andrea, that I am guilty of it myself. When I am around a population of people I haven’t been around much before, like young kids, I tend to stay silent. I don’t know what I’m doing, and I don’t want to say or do anything that I shouldn’t, so it is easier to do nothing. And as much as I didn’t want anyone to judge me for my lack of action or experience, I suddenly realized that I could not fault the young woman who was the hostess at that restaurant either. She had probably not been around many people with disabilities in her life and therefore, she just didn’t know better. As I allowed that idea to seep into my soul, the next question for me became “What do I want people to know?”
I started to put my ideas on paper. They became an outline, which eventually became a book. “More the Same than Different: What I Wish People Knew About Respecting and Including People with Disabilities came out in May of 2018. In it, I share a whole lot of my personal experiences about living with a disability. I talk about what some people did right when we were interacting and what some other people could have done differently. I explain the steps I wish people would take whenever they see a person in the community struggling who might need some assistance. I also share some effective ways to communicate and make accommodations for people with disabilities. Additionally, I talk about what to do if you just don’t know what to do.
Shortly after my first book signing, some people in my community started asking me to speak to various groups about ways to support and empower those of us with disabilities. I have spoken to college classes, book clubs, the staff at various hospitals and even a huge group of city employees in Topeka. Yes, I even got over my fear of talking to kids. I tailor each presentation to the specific audience I am speaking to. On this journey, I have been fortunate enough to have presented to people of all ages. My goal with each presentation I give is to challenge some negative perceptions that people may have long held toward people with disabilities and to make the point that disability is a difference and not a weakness.
Every time I get an email about another potential speaking opportunity, I smile and silently thank that young hostess whose question that was directed to my caregiver eventually uncovered what has become the focus of my professional life. I share my message of empowerment as much as I can with the hope that every effort might bring about ripples of positive change.
Most days I am very busy, but when I stop for lunch, I always eat an adult-sized portion.