First Annual Young Adult Retreat

On September 22, 2009, I had the wonderful opportunity to speak to a group of young adults with disabilities at the First Annual Young Adult Retreat, hosted by the Birmingham chapter of the Muscular Dystrophy Association, and the Lakeshore Foundation.

Jessica Glaze, Health Care Services Coordinator for MDA Birmingham, invited me to speak about my experiences with employment and independent living.

I enjoy speaking to others on these issues. These are important issues, and it’s a passion of mine to inspire. But the truth be known, I was the one who was inspired.

Here I was, sitting in a room with nearly 30 other individuals in wheelchairs and of various disabilities. All different shapes, sizes, and a wide range of physical differences. It was quite humbling, and equally exciting.

First on the agenda was a screening of a documentary called “Darius Goes West”. It was filmed in 2005, and documented the three-week journey of a 15 year old young man with Duchenne Muscular Dystrophy (DMD). Darius’s goal on this road trip, which was from his hometown of Athens, Georgia to Los Angeles, California, was to have his wheelchair customized on MTV’s “Pimp My Ride”.

So, Darius and 11 of his friends, with little or no experience in filmmaking, loaded up on an RV and set out on a journey that would unknowingly change so many people’s lives.

I was so moved by this documentary. It exemplifies what life, freedom, and friendship are all about. I’ve been very blessed to have wonderful friends myself, and I can really relate to Darius in many ways.

I encourage everyone to check out the full-length documentary, available for free, online at www.dariusgoeswest.org

Next we were all treated with pizza and soft drinks, after which it was time for yours truly to speak to the group.

I spoke for about 30 minutes, the latter part of which was answering questions about living on my own, and being employed full-time. I spoke a lot about assistive technology and environmental controls which allows me to operate various things in my house such as my air conditioner, lights, and television.

As I looked out at the many faces staring back at me, all I could think about was that all of my experiences were not necessarily the experiences of others. Oh sure, I had always understood there were differences. For example, my situation is totally different from that of someone who suffers from paralysis. Even though I may not be able to move my extremities, I still have full sensation. But by meeting everyone there that day, I realized just how different, yet the same, we really are. It also made me realize, even more, that I so want to be involved in helping others like myself to achieve the independence and social status they so rightfully deserve.

Afterwards, some of the group went back to playing power soccer, while the rest of us were given a tour of the Lakeshore facility by Lakeshore’s Member Services Specialist, Kelly Sorrells. This was my first time to visit Lakeshore and I was completely amazed at the care and detail that has went in to making this facility everything it possibly can be to accommodate such a ride range of disabilities.

Our first stop was the gymnasium. Around the hardwood gymnasium floor, is a running track. At first glance, it was your typical gymnasium/basketball court. But after looking around the room, you soon realize that this was certainly no typical basketball court. But not necessarily by its own appearance as such, but by the people on the court. This day, they were playing Power Soccer, which from what I understand, is a very serious and competitive sport. Later that day, we learned that there are NUMEROUS power soccer teams all across the country.

What is Power Soccer, you may ask? It’s indoor soccer played by individuals using power wheelchairs. In essence, there are “guards” made of various sizes and shapes designed to accommodate a wide range of wheelchairs, that are mounted on the front of these power chairs, and used to deflect a slightly larger than standard soccer ball. These individuals use their skills of driving their wheelchairs, combined with teamwork, to play a very vigorous game of soccer!

Our next stop was the indoor pool. There are actually two pools, both heated, but at two different temperatures. This accommodates those with different disabilities who may have certain issues with certain temperatures such as as it is the case with Multiple Sclerosis.

These pools were designed and built with a sloping floor, so that a wheelchair (non-motorized of course) can roll freely into the pool and stop once a certain depth is achieved. There are also various pieces of equipment to help those get in and out of the pool.

Next, was the locker/changing room. After visiting the pool, I was already thinking of obstacles that I would face if I ever chose to use the pool. Largest, being the need for a soft place for someone to lie me down to change my clothes. Problem solved! They really did think of everything.

The lockers were easily accessible and with plenty of room to accommodate even the most largest of wheelchairs. Very pleasantly surprised.

Next on the tour was the gym and weight room. Initially, this looks like your typical gym, filled with various equipment for fitness and exercise. However, we were soon told that every piece of equipment was designed with accessibility in mind. Everything from swing-away laterals on larger equipment, to something as simple as straps and larger grips for weight training. Truly, a gym like no other.

From there, we went to a room that was truly thrilling to me… the shooting range! Lined up in a row, were about four or five posts about 3 foot high, where various types of guns or rifles could be mounted. They would fire at targets at the other end of the room. These posts could not only accommodate firearms, but archery as well. The firing mechanisms (triggers) were modified in a manner to allow someone with even the most limited range of motion, to fire these devices.

Personally, this is something that has interested me since childhood. Archery in particular. As a child, my aunt and I made a homemade crossbow with an elaborate trigger mechanism that I could operate. Those days are long gone as my disease has progressed to the point of inability. But I intend to satisfy my passion again through the use of the Lakeshore firing range. We were also told that there are several off-site ranges that are a part of the Lakeshore program to allow individuals to participate in these activities in a real outdoor setting. I can’t wait to fire my first rifle!

Last on the tour was the rock climbing wall. It looked very similar to that which you might find in any activity center facility. The biggest difference of course, were the safety harnesses that would help hoist those that needed assistance. From what we were told, this one activity has helped so many people to achieve self-esteem and confidence like no other. We were told that one of their clients who recently turned 100 years old, celebrated her birthday by climbing this wall!

After the tour, we all returned to the meeting room where we mingled while eating more pizza.

Next on the agenda was Dr. Drew Davis, M.D. and PUSH Product Design. Dr. Davis is an MDA clinic physician at Children’s Hospital and has helped design, along with PUSH Product Design, an app for the iPhone called Locabulary.

Although this application is early in its design and implementation, it shows great promise for a wide range of uses. It utilizes the iPhone’s built-in GPS system, combined with the applications speech synthesizer, to create a “smart” companion of sorts, for those who have an ability or difficulty speaking. Thus making it easier for a person to interact in a social environment by having their iPhone speak for them, and “knowing” most common phrases, based on their location. A pretty ingenious concept if you ask me. Also, thanks to the iPhone’s gravity sensing abilities, it has potential uses for even driving a wheelchair.

Locabulary can be downloaded free from the iTunes web site, and for more information, you can visit the Locabulary web site at www.locabulary.com

Next, we heard from a truly remarkable woman named Debbie Kornegay. I’ve had the pleasure of meeting Debbie on a few occasions over the years, but never had the opportunity to have any kind of real conversation with her. I still haven’t yet, but I hope that will change.

Debbie has had an extraordinary life. She’s 40 years old and is diagnosed with SMA (same as myself). As I listened to her tell her story, I was amazed at how strikingly similar our lives have been. We both have similar body structure and size. We both grew well into our adult years without any other friends with disabilities. All of our friends were, dare I say “normal”. And, we have both had our fair share of partying.

But putting similarities aside, Debbie has achieved many successes in life. She attended the University of Alabama, obtaining a degree in accounting, and she is a former Miss Wheelchair Alabama. There are probably even more things to her credit that I’m forgetting. (Sorry Debbie)

The one thing that inspired me the most about Debbie, is that, through the use of very expensive assistive technology, she drives her own van. This is something I never thought I could ever do, and to be perfectly honest, I still have my doubts. However, if Debbie can do it, then I at least owe it to myself to look into it.

Debbie spoke a lot about her personal challenges in the areas of college and relationships. The latter of which I hope to gain more insight as this is something I have struggled with for many years.

Overall, Debbie is a delightful and inspirational woman, whom I hope to have many conversations with in the future.

Last on the agenda for the day, was a group discussion facilitated by Liz Gunter. Liz is a licensed professional counselor at Children’s Harbor. For this portion of the meeting, everyone was arranged to sit in a circle (a very large circle considering the number of people) where we were allowed to discuss absolutely anything on our minds. This is where the heart and soul of the entire day came together.

There were lots of discussion on feelings that we all go through, living a life with disabilities. One thing that seemed to be universal was a sense of burden we feel we are putting on our friends and loved ones. We all need caregivers. For some of us, it’s parents. For some it’s friends or other relatives. I think most of us know, deep down, that we are not looked at as burdens, but I for one attest that I too, feel that way sometimes.

There are a lot of emotions that goes through our mind when we are in constant need of someone to do for us the things for which we can’t. I believe these group discussions are something we should be participating in on a regular basis. I, myself, took away so much from this one part of the day’s activities. I can’t thank Liz enough for her contribution.

Altogether, I believe the First Annual Young Adult Retreat was an absolute success. I learned so much and met so many interesting and wonderful people. Hearing and meeting with them and learning of their stories has inspired me more than I could have ever anticipated.

Jessica Glaze has done a wonderful job as our Health Care Services Coordinator. Her passion for what she does certainly shines through, and definitely did with this event.

Kelly Sorrells and the Lakeshore Foundation provided wonderful accommodations in hosting this event. Many thanks.

More important however, were the attendees. Without their support, this event would not have been the success it was. Inspiration and advocacy is a two-way street. As long as those of us with disabilities, continue to advocate and inspire, we will continue to be heard and draw the attention and inspiration from those around us, so that we may continue to press forward in this wonderful thing we call, LIFE!

Until next time…