When I was 12 years old, I received a diagnosis of Friedreich’s ataxia (FA), a rare neuromuscular disease. That’s also the year I met Ms. Wheelchair Maryland and started to dream of entering the Ms. Wheelchair pageant. But that goal quickly was overshadowed by the usual adolescent things.
Ms. Wheelchair America was created in 1972 by an Ohio physician to recognize the talent, capabilities, determination and courage of people with mobility impairments. Today, the nonprofit program is staffed and coordinated by volunteers throughout the country. The state and national Ms. Wheelchair America pageants select accomplished and articulate spokeswomen who can communicate the needs and accomplishments of their constituencies to the general public, business community and state legislatures. Contestants must be between the ages of 21 and 60 and use a wheelchair 100 percent of the time.
Because of my progressive disease, I was in a wheelchair full time by college. Despite dreaming of entering the competition, I never felt confident enough to become a contestant and kept making excuse after excuse, until finally I stopped dreaming. After dropping out of college in the last semester of my senior year (due to the school’s lack of accessibility), moving back home and holding only volunteer jobs in my church, I thought I was about as unsuccessful as it could possibly get. These were not the achievements I thought Ms. Wheelchair Texas would want to highlight.
Then, in 2007, my younger sister, Betsy, passed away from complications of Friedreich’s ataxia. A year later, my mom and I went to a National Ataxia Foundation conference where we met many other people with this disease. For the first time since Betsy passed, I didn’t feel alone with my fears and struggles.
I was surprised at how many people with FA lived lives similar to my sister’s life. This disease robs us of many things and makes us incredibly uncomfortable around other people. Not only are we shaky and uncoordinated, but our speech and hearing are highly affected. Because of that, many people with FA tend to isolate themselves from outsiders, who often judge us based on our slow speech. My sister did that. As much as I would like to say that I don’t fit into that category, I also sometimes get “hermit-like.”
After attending this meeting, I began having strong feelings about my life, and decided to enter the Ms. Wheelchair Texas pageant. I would show my friends with FA that you don’t need to be beautiful or have multiple accomplishments to be successful. They — and I — try at life. We wake up each morning and do not give up. Despite being scared of being judged out in “the real world,” I decided to let myself be put on display and actually judged, just to show my friends that we can overcome those fears. I also wanted to prove that there really is nothing stopping us from achieving our dreams. FA does not mean that we cannot do things; it just means it takes us a little longer to accomplish them.
These fears were why I had not entered the competition before. But now it wasn’t about me, but rather about all of the people with FA that I had met. And it was for Betsy, who had never thought she was capable of anything.
The sponsorship money came in very quickly, leaving me no room to back out. I am blessed to live in a small West Texas town that threw itself behind me in support. February 6-8, 2009, I found myself participating in the Ms. Wheelchair Texas pageant in Houston. I was living my dream.
I competed against seven other amazing women: Kelly Amato, Amanda Baze, Ana Calvo, Gloria Combs, Meena Outlaw, Chitra Viswanathan and Kemi Yemi-Ese. We not only became great friends, but we were able to inspire and encourage each other throughout the weekend. I am very proud to have been onstage with these women.
The foundation treated us like royalty. We got so much free stuff! Before the pageant, our hair was done by Chi stylists and our makeup applied by the salon at Neiman Marcus. But more special than the gifts and services was the way they treated us. They made us all feel like beautiful women.
There were about 350 people in the audience at the pageant, and although I’ve spoken in front of more people than that and not been nervous, I was terrified to be there.
As I was going up to the stage, I dropped three cards to my speech and couldn’t reach them from my power chair. I figured I could give my speech from memory, but after the first three sentences I blanked out. Instead of panicking, I said, “I’m sorry — I dropped my speech, hold on.” The emcee picked up my cards and I went on like nothing happened. The nervousness went away. I felt very lucky that dropping my speech was all that I did — not knocking over the microphone or rolling off the stage.
People stopped me the rest of the night and next day to say they were very surprised I didn’t win. I would have been surprised if I did win! The woman who won, Ana Calvo, is amazing. She was born with no arms or legs, but lives a full life and is a joy to be around. We all were given sashes reading “Ms. Wheelchair Texas Ambassador.”
Besides the competition, there were a variety of breakout sessions at the pageant, where we met an image consultant and makeup specialists, and learned about health/fitness. We also learned ins and outs of winning both the state and national pageants, how to handle the media and what to do if we won and had to hire managers and agents.
A film crew doing a documentary on the Ms. Wheelchair America pageant followed us around the whole weekend. They said Texas is at the top pageant-wise, and the other states strive to live up to our level. During the national pageant, Ms. Wheelchair Texas is the contestant to beat and always ends up in the top five.
I am very proud of myself. This was huge for me. I was not sad to not win. Winning is not what this weekend was all about. I am so proud of Ana for winning — this was her second year of competing.
Emily is pictured with 2004 Ms. Wheelchair Texas, Angela Wrigglesworth, a member of MDA's National Task Force on Public Awareness.
The way I feel about myself now is so incredible I don’t have words to describe it. When I look at myself in the mirror, it is not the same Emily looking back — I feel pretty and more confident of myself. I definitely am doing this again next year.
I wish every disabled woman would enter this pageant; it truly helps to break down stereotypes that we hold about ourselves due to messages we get from society. It seems like there’s an unspoken rule that disabled women are “not supposed to enter pageants or be successful.”
I am more grateful than words can express, not just to the Ms. Wheelchair Texas Foundation, but to my wonderful family and friends who supported me. I may not have won the crown, but the friendships I formed, the confidence that I gained and the experiences I had make me a winner.
Emily Neyland, 29, lives in Fort Stockton, Texas, with her parents, grandfather, five cats, three dogs and one turtle. She volunteers at an after-school program and says she likes to “read constantly, and text and talk on the phone nonstop.” She can be reached at email@example.com.