Finding My Voice Again

            My time as Ms. Wheelchair Tennessee 2012 was a year I will never forget.  I learned a lot about the Disability Rights Movement.  More than I already knew.  I learned more about the struggles and hardships that people with disabilities faced as part of their daily lives.  It was just part of living back then.  Just part of doing what was necessary to survive.  Until people spoke up.  Until people like Ed Roberts and Judith Heumann banded together and forced society to let them in. In that year as Ms. Wheelchair Tennessee, I found more of myself.  More of the past that makes my future possible.  And I discovered how desperately I wanted my voice to impact the present… to change the future for others in the same way Ed Roberts and Judith Heumann changed it for me.

            In March 2013 I passed on the crown, so to speak.  Bliss Welch became Ms. Wheelchair Tennessee 2013.  In so many ways, she is perfect for this role.  And I know she will make us proud.  But I would be lying if I said it has been a struggle for me these past few months.  I am still active in the Ms. Wheelchair Tennessee Organization.  I lend my skills wherever needed to help Bliss, and to help this amazing organization grow.  There was some time, however, when I felt a lull… a loss in my life.  I felt as if I had lost the ability to speak out.  As if giving up my crown meant giving up my voice.

            I started this blog in an effort to share my life with others.  To remain open and honest as a person with a disability, no more or less human than anyone else.  I thought I lost my voice these last few months.  But I was wrong.  I forgot the most important lesson being Ms. Wheelchair Tennessee 2012 taught me.  The title might have handed me the microphone, so to speak, but I had to be willing to speak into it and make some noise!  Recent events have reminded me of this, and I am raising my voice once more.  My apologies for the silence while I worked on some kinks.  I’m back!

Rolling in the Fast Lane (With a Few Fender Benders)

            I was born with Limb Girdle Muscular Dystrophy. Diagnosed at age 7, I hadn’t yet realized what different was or how it applied to my world. I caught on fast. As a child, I spent a lot of time struggling against my disability, trying to force my body to fit a mold it wasn’t meant for. In high school, as I explored the social venues and found my place in the adolescent hierarchy, others praised me for my perseverance and pushing the boundaries of what “people like me” could do. I was just having fun. Just trying to have the best high school experience I could. Looking back now, I know what I did was so much more than participate in the social scene of the teenage wasteland. I changed the perception of what people with disabilities could do and become. And in changing this perception, I changed lives.

            For the last year, I have had the pleasure of carrying the title Ms. Wheelchair Tennessee 2012. And what an amazing year that has been. From the children I read to and played with, to the politicians I met, each event I attended allowed me to reach out to others. The greatest moments came when I could speak out about who people with disabilities are: proud, capable individuals, seeking nothing more or less than to be given an equal playing field. I thought I was the perfect role model. Rolling in the fast lane to changing the world. Taking what millions of people with disabilities who came before me had accomplished and fighting for more. Fighting for better. Somewhere along the way, though, I forgot I was human. And then the fender bender happened.

            Muscular Dystrophy is a degenerative disease involving muscle weakness and loss of muscle tissue, increasing with time. I lose function of different movements every so many years. Sometimes I don’t even notice until months after it’s started. That’s how gradual it can be. With this loss of function naturally comes mental, emotional, and physical adaptations and acceptance. But as I grew into an advocate and role model for children and other adults with disabilities, I pushed away the emotional aspect. I had this idea that I had to be the ultimate person with a disability: completely accepting of every aspect of life and disability all the time. I didn’t allow myself to mourn the parts of me that changed or abilities I lost. And on the rare occasion I did, I felt ashamed of feeling so crippled. I love my life, so why did I feel so incapable?

            In speaking with a friend and fellow member of the Ms. Wheelchair family, I was reminded that I am first and foremost a human being. I love. I hate. I laugh. I cry. In short, I feel. We all do. We all have loss in our lives, and we have every right to mourn that loss, whatever it may be. We all have a right to our emotional moments. I was reminded that the best role models are those that are truly transparent. My disability, my abilities, my flaws and talents, all these and so much more describe and help to define who I am. And what better way to show people the success of people with disabilities that to open up. I have bad days. I have days where I think, for just a minute, that if I had the chance to walk I’d take it; days where I hate the hassles and planning I have to go through just to get ready for my bus in the morning. And if I don’t share this with others, then what kind of role model am I really? Who would benefit from the lessons I’ve learned and the stories I have to share?

I hope when you read these posts you’re able to relate to something I say. Mostly, I hope they touch you… change you… inspire you... empower you to embrace yourself for who you are, without limitations. Because at the end of the day, the most important thing is that you love yourself. Enjoy!