Hopefully, most readers know a simple fact about me by now: I happen to embrace my disability. I’d be the first to tell you that there have been many times throughout my life when my situation has caused frustration and pain. However, I have also been able to do many of the things that I have done in my life because of my disability, not in spite of it. I see my cerebral palsy as part of who I am. A characteristic, not a character flaw. And I see myself as complete and unbroken, even though there are many things that I cannot physically do for myself.
That being the case, I have been known to talk about my disability. Often. I speak to people about my thoughts and feelings and the way that my experiences have shaped my life. I talk about disability etiquette and disability empowerment, and ways that those without disabilities can be respectful of those of us who might need a little extra help. I also talk about rights, laws, and policies. I speak up in support of programs that would improve the quality of life of those of us with disabilities, and will advocate until my dying breath for people to be able to live in their communities with needed support, instead of in nursing homes. It is just what I do.
In all of my talk, the subject of accommodations comes up fairly frequently. When I talk to people about accommodating the needs of those with disabilities, they often think of physical things that need to be different. For example, wider doorways, ramps, braille menus, sign language interpreters, grab bars in the bathroom. But several years ago, my eyes were opened to a particular accommodation of a different sort. This one means more to me than any physical one ever could.
In 2007, I was crowned Ms. Wheelchair Kansas and got the opportunity to compete in the Ms. Wheelchair America pageant. I can say with conviction that meeting all the title holders from other states and hearing all they had accomplished made that week one of the most empowering of my life. It was there that I truly began to understand, deep within my soul, that I had the power to do anything I set my mind to.
All of the people I met were special, but two, in particular, stand out in my mind. Matt and Tracey were two of the judges. A married couple, neither one has a disability. From the moment that I met them in my first judging session of the week, I felt a connection.
The Ms. Wheelchair America pageant is not a beauty contest. According to their website, “it is instead a competition based on advocacy, achievement, communication and presentation to select the most accomplished and articulate spokeswoman for persons with disabilities.”
I knew before I left for the competition that I didn’t want to be Ms. Wheelchair America. I didn’t think I could handle all the travel. Also, since Ms. Wheelchair America is a nonprofit organization, and both state title holder and Ms. Wheelchair America are volunteer positions, the organization does not pay for caregivers to travel with the title holder. These days it is not possible for me to travel alone.
So, I knew I wanted to go simply for the experience. My only goal was to make a good impression on the judges. Their questions were intriguing.
“Who is your biggest mentor?”
“What makes you laugh?”
“How do you react when you find a handicapped parking space filled by a vehicle that has no proper registration to be in the space?”
“If you become the titleholder this weekend and get three minutes, or maybe just 90 seconds, with the president of the USA at the White House, what points would you make?”
“Sometimes able-bodied people are unsure about the proper etiquette in embracing or shaking hands with someone in a wheelchair. How do YOU help break down those barriers when greeting someone?”
“How do you go about welcoming someone who has a prosthetic arm – when you might normally shake hands?”
“This event is supposed to put a focus the abilities of a person who has a disability. What is your most important ability?”
I answered the questions as honestly and completely as I could. At the end of a week of judging sessions, there is a crowning ceremony. It is there that the judges announce the top five candidates who go then go on to compete for the title. Since I did not want to be Ms. Wheelchair America, I was not disappointed when I did not make the top five. In fact, I was genuinely happy for the women who did make the cut. So, after their names were called, I sat back to enjoy the rest of the ceremony with no expectations.
Awards were given out for Ms. Congeniality, Spirit, and Lifetime Achievement. I didn’t get those. But after all the other awards were given out, Matt, the head judge, had one more. He announced my name and asked me to join him on stage.
Seriously about eight women wheelchair users moved to the left so that I could go to where he was. He announced that the judges were giving me “The Bouquet Award” because, in their words, I had “the uncanny ability to leave the judges feeling a little more joy than they had before I entered the room”. No award of its kind had ever been given in MWA’s 35-year history.
After Matt announced the award, he did something amazing. He got on his knees to give me a hug.
Rarely had people done that with me before. One of the ways that I am a typical girl is that I love hugs. As a wheelchair user, though, they can be awkward for me. When people are standing over me, it is easy for me to feel overpowered, even when their intentions are good.
After the ceremony, Tracey came over to me and got down on her knees to hug me as well. It was obvious that neither of them thought anything of the accommodation, but it meant the world to me. I consider being able to hug someone a gift, and they made it possible for me to put everything I had into hugging them back. Simply priceless.
We have kept in touch. A few years later Matt and Tracey traveled to a city close to where I live for a weekend to celebrate their anniversary. We met for coffee. The first thing they did when they saw me in the shop? That’s right. They each knelt down and hugged me. It is a very loving gesture that makes me feel totally accepted in ways that I cannot fully explain.
For as long as I live I will fight for equal rights and equal treatment for those with disabilities. In the past, I have encouraged many people with disabilities to “stand tall” when living in a world more designed for folks without disabilities.
But go figure. In the single gesture of hugging someone, people make me feel like an equal when they get on their knees.