I recently attended the Abilities Expo where I met Pearl Gannon, Ms. Wheelchair Illinois. You can watch Pearl compete live at Ms Wheelchair 2015 tomorrow (August 2, 2014), which is held in Long Beach, California. Pearl has Charcot-Marie-Tooth a neurological disorder.
Q1: What is the Ms Wheelchair Competition? A: The Ms. Wheelchair pageants are not beauty pageants. They are pageants in which we as women get to use our voice and advocate for those in wheelchairs. Through our use of being able to speak in front of people in the media, schools, hospitals, etc. After you have won, you are able to get whatever your platform is out there and educate society about different obstacles we face. Approximately 30 states have a competition at the state level, and then all of us get together to compete for the ultimate Ms. Wheelchair America position. This gives us the opportunity to travel around the United States and further share our platform.
Q2: Aside from being in a wheelchair, what are the symptoms of your illness? A: The nerves in your spinal cord start to die, therefore the messages are not relayed to where they need to be and then those muscles start to atrophy. It affects the calves first. I have foot drop, my leg muscles are wasting away, I have weakened shoulder muscles, vocal cord weakness, delayed gastric emptying and the ability to take in the vitamins I need is disappearing, therefore I have a feeding tube, loss of balance, I’m hard-of-hearing, scoliosis, neuropathy, pain, muscle cramping, spasms, among other things. Each case is very different, people being affected differently. I wear leg braces to help stretch my calf muscles out whereas some people have no problem at all walking except that they need to lift their legs a little higher to get their toes to clear the ground.
Q3: How prevalent is Charcot-Marie-Tooth? A: 1 in 2500 people live with a common illness you’ve never heard of. Charcot-Marie-Tooth is not that rare at all. There are just so many other illnesses that have the same symptoms, or people just think you are clumsy and not that anything is really wrong with you.
Q4: What is the hardest part of your illness? A: The pain and fatigue. I always feel tired and take a nap almost every day. Also, the unpredictability. I never know when a flare up will start.
Q5: Have you experienced discrimination? A: When I went to transfer to a different nursing school they wouldn’t let me in because I was in a wheelchair. Their reasoning was if a bed ended to be made and it was against the wall I wouldn’t be able to properly make it. I’ve also encountered other discrimination.
Q6: What is one message you would like to share with people who have disabilities and chronic illness? A: I really hope to not only spread awareness of positive mental health in the disabled in Illinois, but the entire United States. That, and dispelling the stigmas put towards us such as the thought that because we are physically affected we are mentally, and the thought that we can’t adapt and do a job just as well as someone able-bodied, just maybe a little differently. I hope to help people find their world…and help them discover that although life with a disability is difficult, there are reasons to live other. I want people to find their purpose and learn to handle the down moments, as well as dispel the myth that because we may become tired or have limited abilities we cannot be as successful as our peers.
Q7: How can Fashionably ill readers help you win the competition? A: There is a People’s Choice Award in which for every dollar you put towards me I get a vote. This money will go towards my reign as well as a scholarship fund. You can put in as many votes as you want on www.mwa.com under the People’s Choice Award link. Voting has already started. Another way is to donate straight to me for my reign to assure I have the money I need to travel around Illinois and speak. I’m trying to get an accessible van during all of this because my current vehicle is very old and is hard to get in and out of. I’ve actually had to say no to some speaking engagements because I didn’t trust my car to make it.
–Your Stylist, Jessica Gimeno
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