Monday, October 28, 2013

Diversability

As a way to close out disability awareness month, student Martin Davis hosted a diversability forum for UTC students.  The forum was designed as a way for UTC students and faculty to learn more about individuals with disabilities and their daily life. I was invited to be a part of the panel and discuss my disability, limb girdle muscular dystrophy.

Host Martin Davis started the evening by sharing his dream of how the forum came to be. It was easy to see how much this evening meant Martin.

Martin educated the audience about a condition he was born with called spina bifida.  He bravely shared intimate details of his childhood.  Elementary and middle school days were the hardest for Martin. Children can be so cruel at that age and it's hard to fit in if you have a disability. As I looked out into the audience I knew that Martin did not have to worry about his current classmates being cruel to him.  I instantly knew which audience members were Martin's friends. They beamed with pride and a few of them were even filming his performance, which was absolutely fabulous. I learned so much thanks to Martin being willing to share his story.

Next on the panel was Preston. Preston shared his story of living with autism.  It was all thanks to an article in the Chattanooga Times Free Press about autism that led Preston to his diagnosis.  He educated the audience about the autism spectrum.  Preston spoke about different body mannerisms that people with autism can show. He also spoke very highly of the Mosaic program that the Disability Resource Center at UTC
designed to help students with autism.

Allie was the first female on the panel and spoke about dwarfism. Instead of discussing the medical side of dwarfism, Allie spoke about the social issues that come along with having a disability.  She not only spoke about how cruel children could be but how insensitive adults could be as well.  Allie said that random strangers try to sneak photos of her all the time because she is a 'little person'.  Standing 4 feet 5 inches tall, Allie is a determined young lady who wants to be seen for the person she is and not for the disability that she has.

I was the final person on the panel. I immediately had to apologize to the audience because I knew I was not going to be nearly as funny as Allie had been. As time was quickly running out, I briefly told my story about being diagnosed with limb girdle muscular dystrophy. I talked about all the things that I have done in spite of living with a disability. I shared a little about the wonderful Ms Wheelchair Tennessee organization. Since educating children about individuals with disabilities has been such a huge part of my platform, I shared a brief summary of my school visits with the audience. The audience and panel members all agreed that educating our children about individuals with disabilities is something that needs to be done.

I was honored to be a part of tonight's forum. I want to thank Martin Davis for allowing me to be a part of this. I hope this becomes an annual event at UTC that grows each year.

Sunday, October 27, 2013

Confessions



Even though I have been exceptionally quiet on social media the last couple of months, I have still been doing several Ms Wheelchair Tennessee appearances. I will be doing brief updates of them so you will be all caught up. 

I must admit I've been preoccupied with several personal matters.  It seems as though every few years I go through an adjustment period.  There are changes in my life that I must deal with, some are pleasant and others are not.  Regardless, changes must be made so I can continue to move forward with my life.  

The most important personal matter I have been dealing with was planning my daughter's second birthday. It amazes me at how quickly time has past since she was born.  I spent the better part of September reflecting on the memories of the past year and just how much my baby has grown, not only in size but also in her abilities.  As bittersweet as watching your baby grow is, I promise this was the more pleasant change I was referring to.          

One of the other personal matters I was referring to was my ability to drive.  Driving has always been an important part of my life.  I must admit I inherited the love of cars and I couldnt wait to drive.  I was at the DVM the day I turned 15 to get my learners permit and the day I turned 16 to get my drivers license.  Being able to drive has always been a large piece of my independence.  I love being able to come and go as I please. 

Since 2010 I have been driving a Yukon XL with an adaptive drivers seat and a wheelchair lift in the back.  The front seat would turn, come out of the car and lower to 18 inches off the ground.  I was able to transfer from my wheelchair to the front seat and then remotely drive my wheelchair back to the lift.  It was AMAZING (and not a minivan).when it worked.  On Thursday May 23, there was a malfunction with the seat.  I was unable to drive until the seat could be repaired.   Unfortunately, this repair was not complete until August. 

After almost three months of not driving I wondered if I would still have the strength I needed to safely operate a vehicle.  I drove to work and back twice after the seat was fixed.  It felt wonderful to be behind the wheel of a car again.  I had really missed not being able to drive!!  Those two short trips to work and back allowed me to realize something else, if someone were to slam on their brakes in front of me, I wasn’t 100% sure that I would be able to keep from hitting them. 

The time had come that I needed to look into driving with hand controls.  Since August, I have been consumed with regaining by ability to drive.  I am now one step closer to (but still several weeks away) being behind the wheel again.    

I will do my best to fill you in on everything that has been going on during the last couple of months.  Thanks for hanging in there with me.