Everyone, Meet David Gayes….
I feel that I am very lucky this week to post two interviews. Earlier this week you read Michael Boll’s interview about his autism Podcasts, and today I would like to introduce all of you to David Gayes.
David and I had our Web sites highlighted on the AOL Ability Channel on the same day in Novermber of last year, and I was immediately impacted by his blog’s enthusiasm and his effort to convey his message about his life to the world. You can see this in his smile and eyes from the photo above.
It also seemed ironic to me that our Web sites are very much akin…his just happens to be first person from the experience, while I’m first person dealing with the experience (that’s one way to put it on a Thursday morning)…and both are positive in showing that, “hey, life is life..it is what we are trying to do with it that counts!”
So I reached out to David to be interviewed. He’s not autisitc. However, I think you’ll find what he says below to be of value to the readers of this blog that are, or care for, special needs kids. I don’t think it is too much to say that we’d love for all of our kids to grow up to be alot like you David in outlook on life…and I think we could all learn a bit from you.
Except that Chicago Bears thing.
Enough from me – Folks, here he is straight from greater Chicagoland….David Gayes.
I am taking a year to interview people with disabilities about their perspectives living with a disability. I want my interviewees to share personal stories and anecdotes from their daily lives. In my blog, I reflect on the issues brought up in these interviews. Occasionally, I post other disability stories that I find interesting, important, or insightful and, here and there, a story from my own life. As I say in my blog profile, I believe society often underestimates the complexity of living with a disability – the joys, the challenges, the ordinary, and the extraordinary. There is a tendency to define people with disabilities as either pitiful or inspirational. Neither is true.
I am 21 years old and live in Chicago, Illinois. I am a triplet. I like sports – particularly following my Chicago sports teams. (Da Bears are going to win the Super Bowl!) I’ve been singing in choirs for many years, and I currently sing in my church choir. I also like to travel. I took a wonderful vacation to Yellowstone this summer. Yellowstone is a beautiful park and is wonderfully wheelchair accessible.
As triplets, my sisters and I were born prematurely. At some point before or after birth, I had damage to my brain. The brain injury of cerebral palsy is caused by a lack of oxygen and causes the brain to send undesirable messages to the muscles. It does not get better or worse, but the effects on my body can change with daily use, therapy, surgery, growth, and aging. In my body, every muscle seems affected in some way. My condition is called spastic quadriplegic cerebral palsy.
One of the hardest parts of my cerebral palsy is the pain that the spasms cause – particularly in my back, neck, and hips. Also, spasms in my diaphragm muscle cause problems, but because I am a singer, those problems are less than they could be. I have had a lot of physical therapy which has helped my function and decreased the number of surgeries that I have needed. Another hard part of my cerebral palsy is my limited stamina. It is frustrating to tire so quickly when I have things I want to do.
I use a lot of equipment to help me with my daily activities. To use the computer, I use a combination of one finger typing, Soothsayer Word Prediction software, and Dragon NaturallySpeaking. Also, I rely on a Kensington trackball. I use Dine with Dignity silverware to eat, but that can be a hassle; I prefer to just use my hands. I get around with my Permobil wheelchair, a wheelchair which has the advantage of allowing position changes. Because my eye muscles tire easily, I listen to books on tape.
When I was very young, my cerebral palsy was just not relevant in my life. To me and my sisters, getting around with wheels or by legs was like having brown hair or red hair. Yes, the differences existed, but there were much more important things to think about like playing make-believe, singing songs, or reading books.
It wasn’t until I went to school that I realized I was “different”. And in an ableist society, such a “difference” is negative. I was forced to face some of life’s difficult lessons at an early age and head-on. It seems to me that society often wants to put down those who have a disability. In addition to my family, my church plays a role in helping me address who I am. And the principle I am seeing is that each of us has human dignity, disability or not. Diversity is not negative. In fact, it’s positive.
Another lesson my disability teaches me is to “think outside the box”. When I make a decision, whether it’s how many classes take or what activities to pursue, I think about what works best for me, rather than what everyone else is doing. Throughout grade school, I was schooled in many different ways depending upon the circumstances each year. For high school, my parents and I looked at the priorities regarding my body’s needs, my school needs, and my social needs. We decided that I would go to school for half a day. It took me six years to finish high school. It was difficult emotionally to not graduate with my peers, many of whom I had known for 12 years. However, I believe my parents and I made the right decision. Staying two extra years in high school allowed me to give my body the rest and exercise that it needed, to take an honors philosophy class and an AP Spanish class, and to have a little time for friends and fun.
I am spending one year on this project. Next fall, I plan to go to college. I enjoy history and Spanish, but I have no idea what my major will be. I’m not sure what to do with the project at the end of this year.
You didn’t ask, but I thought I’d share my thoughts on parenting a child with a disability. (I’m obviously not a parent, so take what you want from these.)
1. Most importantly, love your child. Even as a little child, there are constant threats to self-esteem from many sources.
2. Respect your child’s dignity. Your child will learn self-respect from you. Help your child’s see that he or she is not the disability.
3. Think of experts as tools in the toolbox. Use their skills and talents as you see the need for them, but don’t feel like you have to do everything they say.
4. Trust yourself and your child. Be willing to think “outside the box” to meet your child’s needs.
5. Respect your child’s disability and the gifts that come from it. Your child will learn things that you can’t imagine because you don’t have that disability. You don’t have to understand all of these gifts, but be respectful of them and learn from your child.
6. Network with other parents facing similar challenges that you face. Share ideas and experiences.
7. If appropriate, foster friendships for your child. When I was little, playing at my house often seemed to be the only way to be really included in peer activities. I remember eagerly looking forward to my birthday parties. Whether it was playing freeze tag in a swimming pool, going to a Chicago Wolves ice hockey game, or playing basketball with a hoop that was lowered to my level, I had good times with my friends, playing games suited to my abilities and going to events that were wheelchair accessible.
8. Everybody makes mistakes. Learn from them and move on.
9. And finally, I just thought I’d throw this one in – give your child ice cream whenever he or she wants.
David: we have ice cream every night after dinner. Demetrius is especially keen to white (vanilla) and pink (strawberry). Thank you so much for taking time to give us some of your extremely insghtful thoughts.