Tuesday, November 17, 2009

Technology gives a paralyzed artist a new way to express himself through art.

My brother-in-law sent me this article/video (http://gizmodo.com/5403741/eyewriter-allows-man-to-paint-despite-paralysis). It is a great demonstration of how technology can open up new possibilities & return independence to people with disabilities. As a disabled artist, I can certainly understand how liberating the creative process can be. Painting is one of few things that I can still do (with a limited amount of assistance to help set up). I feel as though I can relate to the man (Tony) in this story on many levels. He is completely paralyzed, due to ALS, but was a gifted graffiti artist before his illness. I too am paralyzed (from my chest down) and have a background in art. Prior to my accident I was an art teacher. I was also studying painting at night. The love of art & the ability to still be able to express myself through painting, has been one of the few things that gives me the strength I need to keep moving forward.I am fortunate to have a bit more function than Tony, but I know the desperate feeling being locked-in your own body.Shortly after my accident I was placed on a ventilator and completely unable to move or speak. I know exactly what it is like to have your mind racing with thoughts and being unable to communicate them. Even now, it is extremely frustrating that I can't instantaneously jot down thoughts or sketch ideas as they come to me. Although I'm sure they've developed a system for Tony to communicate his needs, I'm sure it is only a fraction of what he'd like to say. Not to mention the fact, that you can only communicate when people are with you. It becomes impossible to communicate by phone or initiate conversations. I can remember my nurses, friends and family using alphabet charts and lists to help me communicate through a system of blinks. It was an arduous task to try and hold the most basic conversations. I felt frustrated and trapped during my time spent on the ventilator.Tony's condition, ALS, or Lou Gehrig's disease is progressive and I'm guessing he has lost function/mobility over time, and will unfortunately continue to degenerate in the future. I recognize the differences in our conditions, but feel the similarities are such that I can relate to Tony's situation much better than the people that wrote the article and filmed him. I can imagine what he's going through and what emotions he's feeling because I can draw from my own experiences.My paralysis is due to a spinal cord injury, which means I lost practically all of my function/mobility in an instant. After the initial impact of a spinal cord injury, the spinal cord swells and the body goes into shock. In my case, I only recovered movement/feeling in the areas controlled by the portion of spine at or above the injury site. Luckily, that meant I was able to get off the ventilator as the swelling subsided. Although it's not much, my ability to speak and move my head and neck has given me enough function to paint using my mouth. Painting has become a vital outlet for expression for me. Painting has also given me a sense of purpose.I'm not usually interested in gadgets. I'm always focused more on finding a cure to paralysis, than finding adaptive equipment. My aversion to "gadgets," as I always call them, is due in part to my stubbornness and refusal to accept my situation as permanent. Part of me feels like if I embrace life in a wheelchair whole heartily, I'm giving up my belief in a cure. I much rather invest my time/money towards finding a cure, versus the development of adaptive equipment. That said, I understand the quality of life factor and agree that gadgets play an important role in allowing people with disabilities to retain as much freedom as possible.I'm positive that Tony's quality of life has been improved by owning/using this eye writer technology. I think it's wonderful that he can express his thoughts and continue to share his artwork with the world. I've seen similar technology used to navigate the computer as well. It is amazing that these machines can interpret so many different commands from such infinitely small movements and blinks. I know that I would feel lost without my computer these days and devastated if I could no longer paint. The power of expression is an awesome thing. This eye writer technology can give Tony (and people in similar situations) the ability to express more than just his needs. He can express his thoughts and feelings through art in ways that might not ever be able to with words. Art provides an outlet for such a deep and complicated emotions and can be very therapeutic in helping people deal with traumatic situations. It's not often that a gadget catches my eye, but this is something that excited me and gave me a need to share the info with others. Brain power is so often wasted on creating trivial things or on inventions that ultimately hurt society (like bombs and weapons). I find it refreshing to see a device that has the potential to improve the quality of peoples' lives. The eye writer is a wonderful application of technology.

Monday, November 16, 2009

My new website

I'm very excited to announce that I have a new website. Although I've had a Myspace account for some time now, I thought it would be best to have my own domain. I use most of the popular social networking and media sharing sites: Myspace, Facebook, Twitter, Youtube and Flickr. It gets bothersome to keep up with all of them and they can be limiting to people that don't have/want an account. My new website compiles all of the websites I use into a concise, easy to use format. My new website will be constantly evolving as I make changes and update the individual sites I use. I'm hoping it will provide all my friends, families and readers an easier way to access information and keep in touch.
My main objective for having a website is to use the web as a means to spread the word about spinal cord injuries and educate others about paralysis. My secondary objective is communicate with family and friends. Lastly, I hope to network with other spinal cord injury advocates and people that are living with paralysis.
I've been blessed to be able to share my story and feeling through my paintings and writing. I'm grateful to have been given opportunities to exhibit my work and speak. I hope I will continue to forge new connections and find new ways to keep exhibiting and educating others. I'm hoping my new website will be a useful tool to help me achieve my goals and a resource to others.
I'm anxious to hear opinions & feedback, so please let me know what you think. Feel free to share ideas or point out areas that need improvement!


One Degree of Separation Campaign

The Christopher & Dana Reeve Foundation is running a campaign called "One Degree of Separation," in attemps to help raise funds for research to find a cure to paralysis. Their goal is to raise $1.275 million. According to a 2009 study conducted by the CDRF, there are approximately 6 million people living with paralysis. Of the six million, 1.275 people are living with paralysis due to spinal cord injuries. The campaign targets those of us who have been impacted by spinal cord injuries. The mission, is to get each person in the spinal cord injury community (this includes, families, friends, doctors, nurses, etc.) to donate just $1 dollar. '
Nowadays one dollar can't get you very much. Imagine however, what an impact one dollar could make if everyone contributed. I think giving a dollar for a cure is certainly a bargain! A cure would be a priceless gift to those of us living with paralysis. One dollar is a small investment that has the potential to make huge impact on millions of lives.
The campaign also has a website where you can read stories and see pictures of people that are living with paralysis. I think it's a great way to see the diversity of the people affected by spinal cord injuries and puts it a face to the problem. It's wonderful that the CDRF took the time to compile these individual stories. The pictures and stories can touch people's hearts in such a way that facts and statistics can not.
Just remember that behind every statistic there is a real person. You'll find my picture and story on the site, among many others. I encourage you to take the time to read the stories and share the information with family and friends. Most importantly, please donate a dollar.
I've included a link on my website and below.