The following is from my book “More the Same than Different: What I Wish People Knew About Respecting and Including People with Disabilities.” The book is available on Amazon.
The shrill of the phone ringing in my dorm room during the predawn hours of that morning in late October 1987 only added to the chill in the air. I knew that whoever was calling at that time of day did not have good news, and the flatness of my mother’s voice confirmed it.
“Your brother has been in a car accident,” she said grimly. “The extent of his injuries is unclear right now, but doctors think he damaged his spinal cord. He is not moving his legs on his own. Dad and I are flying out to where he is in a few hours, and we will let you know more information as soon as we have it.”
The thoughts swirling around in my head made me hang up the phone in a daze. It seemed like all the sadness I had ever felt in my life made its way to the pit of my belly and sunk as it combined with the weight of the overwhelming confusion. My brother, paralyzed? It couldn’t be true. This could happen in other families, but not to us. Since I had been born with cerebral palsy, our family already knew what it was like to have a member who used a wheelchair, so didn’t that make us exempt? What would be the point otherwise?
My thoughts spiraled downward as the morning wore on. Since he is only seventeen months older than I am, I don’t think he was old enough to understand that when my parents spent time with me in therapy as a young child, the time spent away from him wasn’t personal. As we got older, he always emptied the dishwasher and fed the dog because I wasn’t capable of doing so. Resentment ran deeper when he got his learner’s permit. Since I couldn’t drive, he took me to appointments and sports practices, and along the way, he often took his feelings out on me as well.
“I have to do everything for you,” he would yell. “It’s just not fair!”
“Sometimes I wish you could live my life for just one day,” I would counter. “You have no idea what it is like to live with a disability!”
So, as I sat in my room that morning waiting for news, I had to wonder if the universe had granted my wish just to spite me.
“I didn’t really mean it!” I screeched, from the deepest place in my soul. But nobody heard me.
If I were being totally honest about my feelings that day, in the midst of my grief, I was a little lost and resentful myself. If my brother was going to be a wheelchair user, what did that mean for me? Would I lose my place in my family? Would his need for more attention mean that my parents and older sister would love me less? Was that the way he felt throughout our childhood? The heaviness of the guilt threatened to crush me. And it might have done so if my worry for my brother hadn’t been so intense. How could I possibly be thinking of myself at a time like this? My brother was the one who needed help at the time, and that overshadowed everything I was feeling about myself.
His paralysis turned out to be permanent. In the months that followed, he went through rehabilitation and eventually resumed his life, albeit in a far different way than he had before. As I processed everything that had happened, I kept coming back to one question.
How could I help him?
I knew from experience I could help my brother with the logistics of living in a wheelchair, like learning how to navigate cracks in the sidewalk while pushing his chair and what the best course of action is when your wheelchair gets stuck in the snow, but I wanted to go deeper. How could I help him? And could I help other people with disabilities as well? As I continued to ponder these thoughts and questions over the next semester or so, one thought stuck in my head. My brother, myself, and anyone else with a disability could adjust and deal with their circumstances most easily, it seemed to me if the disability was not a factor to the people around them.
It has become my life’s work to use my knowledge and communication skills to encourage, educate, and empower people to respectfully break down barriers between those with disabilities and those without disabilities.
My brother now lives in the Northwest. His wife, four kids, and his consulting business keep him incredibly busy. Although time doesn’t permit it these days, he used to play wheelchair tennis and participate in wheelchair races. He hasn’t ever let anything slow him down.
The biggest thing his accident taught me is that disability has an open enrollment policy. Anybody is a diving accident or a slip on the ice away from their lives being changed forever. Disabling conditions also tend to get more prevalent as people go through the aging process. Therefore, the issues that are so important to me in terms of respecting and including people with disabilities could potentially impact everyone.
Even if you are not affected by disability directly, you might still see its effects around you. Maybe a family member, friend, or coworker has had a stroke, developed a chronic illness or been in an accident. Or maybe you just want to know more. Whatever the reason for reading this book, I hope to share some tools and skills that will help you on your journey.
In all the writing and speaking that I do, the most common feedback I get is from people who say, “I want to be respectful of people with disabilities; I just don’t know what to do. And because I don’t want to be offensive, I end up not doing anything.”
Let me tell you something. I get it. When I am around a population of people who are unfamiliar to me, I get uncomfortable, I don’t want to mess up. So I stay quiet. I can be safe that way. But the thing is, If I am safe, I never grow, And I don’t grow. I don’t want to be exactly the same person I was yesterday. I want to be better. I want to be more well rounded. And that means I have to step out of my comfort zone every once in a while.
So that is my challenge to you as it relates to people with disabilities. Say hello. Ask how you can best be of help to the person you know who just had a stroke. Their answer may surprise you. Because you just might discover that we are all More the Same than Different!