Redefining Disability Challenge – Question 5

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the fifth question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later. Here is this week’s question:

What are some significant moments/events in your life that connect to disability?

I have had many opportunities in my life due to my disability. Not just perks like accessible parking or good concert seating, although I’ll admit those are nice.

I was a poster child for my local Muscular Dystrophy Association (MDA) years before we were called “goodwill ambassadors.” I have mixed feelings towards this organization which uses children and pity to raise money. I will explain these at a later time, but for now I will simply say I had many opportunities as a child because of the MDA. Serving as a poster child meant I was regularly invited to attend events such as the Ringling Bros. and Barnum & Bailey Circus or the Ice Capades (do they still exist?). These events were treats my family would not have been able to consistently afford. At the age of eight, I attended my first week at MDA Summer Camp. Camp, a luxury my parents would not have been able to provide without the MDA, exposed me to my first peer network of other children living with neuromuscular disease. I grew from shared experiences and had my first taste of disability pride over the next eight summers. 

My years as a poster child also gave me a skill set I have come to rely on. I first appeared on camera at age seven. I learned at a young age I am comfortable in front of an audience. I am not a nervous interview subject. I can talk about my disability and many other topics with ease. I learned how to “work a room” long before I learned how to put on make up. I know I would not be a confident public speaker without this early exposure and experience.

The summer after my first year of college, my disability qualified me to participate in a summer employment program for disadvantaged youth. I spent six weeks working as a teacher’s aide in a special education summer school program. This opportunity confirmed my chosen field of study (speech-language pathology) and offered me real world lessons which helped me apply the theory I was learning in school.

I started college the year after the Americans with Disabilities Act (ADA) was signed into law. Like most campuses, my school was making changes to policy and physical structures in an effort to be more welcoming to students with disabilities. I was a charter member of a new group on campus, the Disabled Students Organization. Each year, we were invited to meet with the college President to discuss the access issues we felt were most important to address. This provided me with valuable experience advocating for others with various disabilities in addition to myself.

The aspect of my adult life connected to disability which has had the most impact has been my involvement with the Ms. Wheelchair America (MWA) program. This organization, whose mission is to provide opportunities for women of achievement who use wheelchairs to educate and advocate for people with disabilities, changed my life.  Unlike traditional beauty pageants, participants are judged on their ability to be an articulate spokesperson for people with disabilities. In addition to being a state titleholder, I served in a variety of positions on the national Board of Directors for MWA for ten years and coordinated the New York program for twelve years. MWA, a volunteer-lead nonprofit, is an organization I believe in because I have seen so many women grow as a result of their participation.

When I became a state titleholder, representing New York in 2001, I could not predict the influence this program would have on my life. The following is a brief list of what happened due to my involvement in MWA:

  • In September 2001, I was invited to sing on a local television station. The man who would be my boyfriend for the next four years saw me on TV and called me. That’s how we met. Trust me, it was not as ‘stalker-ish’ as it sounds, and it made for a great story whenever anyone asked us how we started dating.
  • I was invited to sing my original song, My Life’s Too Good To Be A Country Song, in Washington DC at the 2003 Olender Foundation Awards, held in the Ronald Reagan Building and International Trade Center. I burst out in inappropriate and amateurish laughter during rehearsal because I was overwhelmed hearing the band playing MY song!
  • I traveled across the country to many places I might not have otherwise visited – Arkansas, Iowa, Utah, South Dakota, California, Virginia, Michigan, and Nebraska to name a few.
  • I gained a sisterhood of accomplished women who, like me, just happen to use wheelchairs for their daily community mobility. These friendships have challenged the way I think about disability and opened my eyes to possibilities I never considered.
  • I further developed my leadership and event planning skills. Coordinating a week-long national pageant for up to fifty or sixty guests who all use wheelchairs is an undertaking not for the faint of heart.

I don’t mention these examples to brag. I use them to illustrate how sometimes circumstances which outsiders feel would be the absolute worst thing in the world (a disability or wheelchair use) can provide meaningful opportunities one may not consider. As an incoming college freshman I never envisioned being invited to the President’s office. Entering my first national MWA pageant as a state titleholder, I never thought I would attend each national pageant for the next twelve years.

Yes, disability is difficult. People can be cruel and unfeeling. But my life has been enriched in many ways because of this marvelous electrical chariot attached to my butt. I am grateful for the gifts my disability has brought me.

2 thoughts on “Redefining Disability Challenge – Question 5

  1. I’ve never heard of Ms. Wheelchair America but it sounds like a really interesting organization! And self-advocacy is something that a lot of people (both with disabilities and without) struggle with, so it’s good that you learned from a young age how to get what you need and serve as an advocate for other people as well.

    Liked by 1 person

    • MWA is a small group of dedicated volunteers, giving their time and efforts so other advocates can have the chance to network and learn. Although I’m not the Coordinator for my state any longer, I still help. Advocacy is like a muscle, you have to practice for it to become stronger and more effective.

      Liked by 1 person

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