I would like to encourage you to write to me if you have any comments or questions; if you find the subject of art and/or disability interesting I humbly recommend that you check out my book Shouting in the Dark; it tells of my struggles with epilepsy and blindness and how art changed my life.Do you consider yourself a disabled or blind artist?
Do you consider yourself a disabled or blind artist?
The first art shows that I did I never told anyone that I was blind -- I would have show closings instead of the typical party that you would have at the opening. At the closing party I would stand over by a side wall, I used a white cane then so I would be holding that, and from time to time someone would walk by and tell me that they were interested in a piece, and did I know where the artist was. I would tell them that I was the artist, and they would always pause for a moment -- I'm sure that they were giving me a strange look as if trying to determine if I was pulling their leg -- when they decided that I wasn’t they would always go back and re-look at every painting. I think they were trying to find the blindness in the art. I didn't tell people that I was blind not because I was ashamed, but because I didn't want it to affect the way they perceived the art. I thought it would interfere with the message of the paintings. The shows were successful, and articles were written that mentioned I was blind -- after that it didn’t matter if I told people I was blind or not because everyone already knew, and so I began having regular show openings and no longer hid my blindness.
So in answer to the question of whether I consider myself a blind artist I have to say -- Not really; not anymore than I would consider myself a brown haired artist or a blue eyed artist. The blindness and epilepsy are parts of me that are considered disabilities, but they are just some of the characteristics that comprise me as a whole -- they no more define me as a person or artist as does any other single characteristic such as my height or weight. It is easy to focus on limitations, the aspects of life that disabilities restrict, but you could just as easily say this about any of your defining characteristics. Because I am 5'11" I would never make it as a horse jockey, I'm just too tall, but on the other hand I'm probably too short to play professional basketball. We all have limitations and exceptional qualities that define us; I think it is important to decide which of the two, your strengths or your weaknesses, that you wish to spend your time focusing on. The wonderful thing about art is that it is never about what you can't do; it is only concerned with what you can accomplish and create. There will always be more that we can’t do than can, but who cares if Einstein couldn’t bake a cake or if Shakespeare was a poor dancer - we focus on their strengths, just as they did, and we are all the better for it.
I would like to mention that when I first began painting I painted for the same reason that I paint now -- for myself. It never crossed my mind that anyone would ever see a painting of mine; I never imagined anyone would even want to. I painted because it was my way of dealing with the trauma that I was going through; art had always been my lifeline. Over time I found that the more I painted the more connected I became with the people and the world around me. Painting for most artists is their way of expressing themselves; for me it is this as well, but it is also my way of visualizing the world -- art is both my mouth and eyes. The fact that my art has been sold all over the world, and that this has given me the wonderful gift of being able to write and paint everyday is nothing short of astonishing to me. Though my paintings are intensely personal to me, and I suppose actually because of this, the connections to people that I have made through my artwork have also been indescribably meaningful to me.
How has your perception and art changed since losing your sight?
Radically, and for the better. Until I lost my eyesight I never had a clear perception of what art truly was, and I certainly had no clear understanding of myself. Whenever I first started painting I never thought it could equal the accuracy and complexity that my drawing had when I was sighted; I felt that it would always be an inferior way of creating art when compared to what could be accomplished with eyesight. I only continued because I wasn't doing the art for others to look at; I wasn't as interested in the finished piece as much as I just needed to create again. What I discovered was a whole new world of perception that in many ways equaled eyesight, but in some ways actually exceeded it. Eyesight is very good at taking in a lot of information, but the drawback is that it is very poor when it comes to detail. Most artists, and remember we are talking about a group of people who spend a good deal of their time studying and practicing depicting objects and people in a visual medium, and yet even these professionals would have a hard time with creating a detailed drawing from memory. The overall shapes and forms would be accurate, but it is the little details such as the twists and turns in the ear, the exact shape of the lips, or the precise shape of the nose. Most sighted artists will work either from a photograph or spend hours with a live model to be able to capture all of the detail. With the Touch to Sight techniques that I use I can usually get a full 3-D picture of a person's face in less than five minutes. If I choose to I can spend longer with a model, but it usually isn't required.
More than this though my entire perception has changed. When sighted I would do a portrait of someone, and I would rate how effective the drawing was by how closely it resembled the person. This seems rather hollow to me now. A person is made up of skin and bones, lines and curves - this is true, but it is also made up of ideas, emotions, impressions, experiences, memories, and raw gut feelings. If your mother walked into a room everyone there would see someone different. To you she is a collection of all of the birthdays, encouragements, good and bad times that you have shared through the years. For everyone else she is a collection of impressions - the shape and color of her hair tells one person one thing, and something else to another. Her height, color, and the way that she carries herself along with a million other details fills in an image made up of memory and conjecture, and it all happens in the span of a moment. It is no wonder why if a dozen people witness a robbery there are a dozen different stories as to what happened. When I paint I want to capture the skin and bones of a person, but also who they are - at least who they are to me. When I paint a musician I may paint their face, but the color comes from their own compositions. I try to do this for everything I paint - to find what is real about it, and depict that. Many of the most interesting parts of a person are invisible and hidden from view anyway; I think my blindness might be just the lens that is needed to see into that world.
Do you mind talking about your blindness?
Not at all. For the past five years I have done dozens if not hundreds of interviews with journalists from all around the world, and have done workshops and lectures all over the United States and in Holland and Canada with thousands of people, and have talked to more classrooms filled with students than I can count -- and believe me children will not hesitate to ask you anything! I have been asked by kids how I do everything from eating to even going to the bathroom as a blind person. Ha... children are wonderful; they have no idea of embarrassment or hesitancy when it comes to talking about anything. I remember when I first lost my sight, and how alone I felt even though I had family and friends there to support me. It helped me to hear what others had to say who had faced difficult circumstances, not just vision loss but anything that someone was going through that was devastating to them. There are many different types of suffering and problems that we can face, but no matter the cause of suffering it takes much the same spirit to deal with it. If my talking about my specific circumstances helps anyone to understand or feel any level of comfort at all then I have no problem sharing anything and everything.
How did you go blind? Before I lost my eyesight I knew very little about blindness. In fact, I was legally blind for several years and didn't realize it. This was because I always envisioned blindness as being a completely dark world, and while what I could see was extremely fuzzy it was not completely dark. Also, the reason for the vision loss was due to epileptic seizures -- I would have a series of seizures and my vision would blur, but generally it would clear up a while after the seizures had gone away. Because of this we didn't see the vision loss as necessarily being a problem in and of itself because it was felt that if we could get the seizures under control then the vision would just take care of itself. What we didn't realize was that after the seizures my vision wasn't completely clearing up, and there was residual damage being done. The damage at this point was gradual, but it was to quickly accelerate. I had a bad reaction to a change in medications for the epilepsy which actually caused very severe seizures that put me into repeated status epilepticus (this is a seizure that you do not come out of without medical intervention) a number of times. The seizures were severe enough so that my breathing, and even my heart would stop. This caused damage that one of my neurologists likened to being hit over the head with a bat causing concussion after concussion over and over again. The damage from the seizures caused my vision to go from 20/400 (double the limit for legal blindness) to complete blindness. The part of my brain that handles vision just was not able to work anymore. My eyes are just fine; it is just the area of the brain that handles vision that is not able to function properly. If you can imagine a TV that works fine, but is not hooked up to a signal, and just has a blank screen perhaps you can understand what my vision is like now.
Can you detect light? Yes, I do have light perception, but I cannot see shadows or color. My understanding is that 95% of visually impaired people have some light perception, and that unless the optic nerve is completely severed or the actual orb is destroyed then light perception can occur. Perception of light for me is more of a nerve stimulus in that my eyes will take in light causing a signal to be sent down the optical nerve, but when it arrives at the occipital lobe (the area of the brain that handles vision) it is unable to be processed; often light causes me pain, almost like a raw nerve is being pressed. If you were out on a warm sunny day you might know that the sun was shining, even if you were wearing a blind fold, by the feel of the sun's warmth on your skin -- this is much the way light perception is for me. I can ‘feel’ that there is a presence of light with my eyes, but it does not translate into vision.
How did the blindness lead to you painting? Art has been a big part of my life ever since I was little. As a child I was in and out of hospitals and doctor’s offices quite a bit, and while I had a happy childhood, thanks to family and friends, when times became stressful or events seemed out of my control I always had my art and writing as a release. I did not start painting until after I lost my eyesight -- drawing and illustration though were incredibly important to me. While some people may have kept journals as a child; I tended to sketch, and these drawings were as personal to me as any diary entry. Writing was also something I loved, and while I seldom showed my sketches to anyone my stories on the other hand were something that I could share.
At first the idea of being able to draw without eyesight didn't even occur to me. It wasn't until a year after going blind that I began to figure out a way to be able to draw again. Even though art had been literally a daily part of my life for as long as I can remember it didn't even occur to me that I might be able to continue with it. I took it for granted without even a thought that along with my eyesight also went my ability to create art. It is even in the name when you think about it -- the Visual Arts -- so how could a blind person ever hope to participate in something so intrinsically rooted in vision?
During that first year when my vision had gone completely I began learning new ways to do old things. New ways to cook without burning myself, new ways to eat without getting the food all over the place, new ways to sew a button on a shirt, new ways to read and write, new ways to get around without running into things -- basically new ways to do everything. During this time I was a student at the University of North Texas. I had completed two semesters before losing the remaining part of my eyesight; even though I had not learned the adaptive techniques to use a computer, or how to travel independently, Braille - or any other adaptive techniques for that matter I continued to go to class. I couldn't read or write at this point, but I was afraid that if I left school I would never go back; so I continued to enroll in classes and just earned incompletes to be made up later.
Over that year I learned how to travel independently using a white cane, Braille, Jaws and Kurzweil (adaptive programs for the computer), as well as a host of other adaptive skills. I learned to use my sense of touch to help navigate my way around -- either by sensing the floor through my cane or using my hands to feel furniture and walls. I was also using my sense of touch to visualize objects around me such as the cup I was pouring coffee into, or the note that I was writing in Braille. It began to make me wonder that since I was using touch to visualize the world around me to do practically everything then why couldn't I use touch to help me draw again -- the only difference would have to be that instead of making lines that you see I would have to be able to feel them with my fingertips in order to visualize the drawing.
At this time I was the most depressed that I had ever been in my life. Depression and even suicide are very common when someone loses their sight. I felt like everything good or new in my life was over, and when I tried to look at my life logically things seemed no better. Before losing my eyesight I was a severe epileptic; I was doing well in school, but it took all of my time and effort to maintain my grades because of the epilepsy. Now, on top of this, I was blind. All of the hopes and dreams that I had for my life; all of the plans for what I would do after I graduated school were gone. I was not only depressed, but in mourning. The life that I had, along with the future that I was planning, was dead and gone. I had no guarantee that the seizures would not intensify at some point; possibly causing even more brain damage. I felt like I had no potential; that basically I was a zero. In other words I could go nowhere, amount to nothing, or have anything new in my life. What was worse I was concerned that my condition would cause me to be a burden and a drain on my family. At this point I still lived independently, and took care of myself, but what if my condition worsened? What if instead of the successful future I had dreamed of, that my parents could be proud of, I instead became an emotional and physical drain on them. My parents who have given me so much all of my life, so much love and support through all of the time in hospitals as a child, and never asked anything of me except that I be happy. What if I couldn't even give them that simple request? The only reason that I didn't become a statistic was because of their love, and the knowledge that if something were to happen to me they would blame themselves. Instead, my goals in life changed -- the dreams that I had of a future vanished; I had no net worth, but I was also not a burden. I felt that if I worked as hard as I could perhaps there was a chance that I could keep my independence, and if nothing else at least not be an encumbrance on anyone.
While I can see now that I was operating under severe depression ; this state of mind was also a liberating one. You see being at zero goes two ways -- while all of the positive aspects of life I had looked forward to had seemingly disappeared similarly the negative aspects lost their hold on me as well. It is amazing how much stress is released when you no longer worry about what people think about you, or agonize over decisions, both large and small, considering how they might affect you far down the road. Since what you do or say has no impact on life it no longer matters. I was a zero, and by that might mean I had little effect on the world around me it also meant that the things around me had little effect on me as well. While this may sound like a very depressing way to live; in many ways I had accepted that this is what my life would be like. It is almost like a castaway who after spending enough time on a small island finally decides that come what may he had better get used to island living. I hung out with friends, went to school, and from outward appearances had seemingly made a wonderful transition from being sighted to going blind. On the inside though my mind was slowly tearing itself apart.
I had done art every day of my life from the time that I could wiggle a stick in the mud to the classes in advanced drafting and illustration that I love to take. It was not only something that gave me pleasure, but more than that it was the way that I expressed myself and exorcised stress and pain away. The year after my sight had gone completely, and for the first time in my life, I did no art. My brain cut off from the usual visual stimulus of the world around me, coupled with the stress of continued epilepsy along with having to relearn how to live my life in a non-visual way, and having no way to relieve any other thoughts or feelings I began to spiral into a deeper depression, but also images were burning into my mind in such a way that I could not escape them. Think of a song that is stuck in your head; except over days the volume just gets louder and louder. I would have images burning in my mind, and nothing I could do would cause them to diminish. Closing my eyes would do no good of course, and even in my dreams these images would follow me. I felt like I was losing my mind.
If I only had a way to get the images out of my mind and into the physical world then perhaps they would leave me alone. I had never painted before, but the idea of getting color back in my life, colors that I could actually hold in my hand and feel sounded like a dream come true. I knew that in order to paint I would have to first learn how to draw. I needed something that would leave a raised line that I could feel to help guide my way across the paper. I first tried making a grid out of strings the way an archaeologist might map out a dig. While this let me know roughly which area of the paper I was at it did not give me enough detail to be able to draw. I needed actual lines that I could feel with my fingertips. I tried a variety of different materials, but finally found a fabric paint that left a raised embossed line that dried quickly, and could be easily felt. Before having lost my sight I could draw exploded views of airplane engines, blueprints of houses, cartoons, and detailed portraits. Now I struggled to draw a circle or a square, and have the shape on the paper match the shape I held in my mind. Even though I had drawn all of my life, and my brain knew exactly what to do as well as my hands, I had to slowly reconnect them together in new ways. You can liken this to someone losing the use of their legs, and then having to relearn how to walk - even if the person had been a runner those first few steps you are going to stumble. After some trial and error I began working on my first drawing.
I began in the late afternoon making a line, crumpling a paper, making more lines, feeling the lines, and crumpling up more paper. By the next morning I was surrounded like a bird in a nest by crumpled paper, but before me was the first drawing that I had made in a year -- a drawing I thought I would never be able to make again, and It was not good. Even so, I was more proud of that misshapen drawing of a Buddha statue that I had been of any drawn I have ever done in my life. I knew the mistakes in lines and curves could be corrected over time -- all it would take was practice. The overall idea worked though, and for me was so sure that nothing new or good could ever happen again this was a ray of sunshine coming into a world that had been permanently darkened.
How do you paint without eyesight?
Basically what I do is replace everything that the eyes would do for a sighted artist with the sense of touch. It helps to understand how the brain perceives the world around us (for my take on this please read: How can you paint so realistically when you can't see the subject?). When you break it down the eyes really only do two things for a painter; they allow you to know your placement on a canvas (where you are and where you have been), and it allows you determine color.
The raised lines take care of finding your placement on the canvas. Over time I have developed different techniques that allow me to be much more precise when it comes to me laying down the lines. Besides the number of paints, such as fabric paints, that are premade most of the embossing paints that I use now to draw with I actually mix myself. This allows me to control the drying time for different materials, and even to have lines that will remain raised for a period of time, but then dry flat allowing for techniques such as glazing and washes to be more effective. I have also developed techniques where lines can be overlaid on a canvas by using a separate sheet of paper, and also for watercolors to have lines that lie beneath the paper which can be easily felt but not interfere with the thin watercolor paint.
When it comes to handling color I typically use one of two methods. The first I used primarily with oil paints. Because oil paints are made from different substances they have a viscosity and texture that varies slightly from color to color. By adding medians to the pain such as Liquin and paint thinners I can alter the way the paint feels even more. For example: Titanium White is very thick like toothpaste while Ivory Black is fairly runny - more like oil. By adding a little thinner you can make it even more so. In order to mix a gray halfway between white and black you simply mix for a texture that is halfway between the thick and thin paints. This is actually a very precise way of mixing color because your sense of touch is extremely adept at sensing subtle changes in texture. With practice it becomes even more so.The other method is more like using a recipe. Paints such as watercolors, acrylics, inks, and resin-based paints all feel similar to the touch, and changing the texture can make these paints difficult to use. All of the bottles and paint tubes in my studio are Brailled, and when mixing colors I use recipes. In other words I will measure out different portions of each color that I need to produce the right hue. This is no different than using a recipe to bake a cake. If you use the right ingredients in the right proportions then the results will always be the same.
When I first began painting I used only three colors in oils -- Titanium White, Ivory Black, and a Cadmium Red deep hue. I mixed these colors together in different proportions feeling what each combination felt like. After a month or so I would add a new color onto my palette. This took a lot of time, but it was also an exciting process because I always had something new to work with. Over time I began to experiment with different paints, and techniques - something that I continue to do. Just this year I have worked out a new paint to draw with that has revolutionized the way that I can work with paper and un-primed cloth. One of the most important lessons that I learned from my constant research into the old master painters was that they never stopped experimenting in pushing the boundaries - this is something that I have always tried to emulate.
How can you paint so realistically when you can't see the subject?
Actually, I do see these subjects that I am going to paint; I just do so by using my hands instead of my eyes. The reason that this works lies within the brain itself. While we think of the eyes whenever we think of vision; it is in fact the brain where vision takes place. There is much work being done right now in how the brain actually forms images; it is an exciting time because people have been asking these questions for centuries, and we are finally getting some good answers. What you have to remember is that the eyes don't actually send images to the brain -- all they send our chemical and electrical signals. The brain is very much like a computer, and while the computer may have many peripherals (monitors, keyboards, printers, mouse, cameras, etc.) hooked to it, the brain as well has its own peripherals that we call our senses. While each of our senses is very different from one another each must still communicate using chemical and electrical signals that the brain can understand. What scientists are discovering is that the visual part of the brain is not very choosy on where it gets its information from. Whenever you dream you see images the same as you would when you're awake, and to the visual part of your brain these images are just as real as if your eyes were actually seeing them. Studies have been done where a person has been hooked up to EEG, MRI’s, and other scanners and asked to look at photos, let's say a picture of a bird, and they map what areas of the brain are engaged. Then they will take the picture away and just have the person think about the picture of the bird, and the exact same areas of the brain light up. To the brain there is no difference between the reality of your eyes sending it information as you look at an object as your memory sending it information as you just think about an object. To the visual center of the brain it is all just information. What this means is that if the brain had another way of receiving real-time information about an object other than the eyes it would be possible to visualize that object. This is exactly what happens when I use my hands to see an object or face.
Why doesn't everyone receive images through touch all of the time then you may ask? There is a little more that goes into it than that, but in some small ways I think most people have experienced this type of perception. When you are watching TV and reach for the remote control, and without looking are able to turn it right side up and move it around to find the correct button to change the channel you may have a few flickers of images of the remote here and there. I was a very visual person whenever I lost my eyesight; while I won't say that I had an eidetic memory -- it was very easy for me to take tests and visually remember all of the pages in my textbook as I scanned for answers. Whenever I lost my eyesight this part of my brain seemed to reel in on itself in that the major way I had of taking in information, visually, had been taken away. Perhaps it was natural then that whenever I would touch a familiar object after losing my sight, such as a baseball, I would have a picture form in my mind whenever I would touch a baseball. As I would turn the ball around in my hands feeling the leather the picture would change as well. Is my fingertips would run over the stitching the image in my mind would show me a close-up of what I was touching. These pictures at this time were extremely inaccurate, and could be quite misleading. I would hear a car coming down the road and in my mind’s eye I might see a red sports coupe go by -- in reality it might have actually been a white truck or blue van or anything else for that matter. Over time though this began to become better, but it wasn't until I started drawing again that this facility to take what I was touching and translate it into a picture began to grow in leaps and bounds.
The reason for this is because of something that had never before happened in history. In the past there had been artists who had their sight diminish, such as Monet, and their art would change as well, but throughout human history there has never been a time when blind people have taken up the visual arts. Why this change now? Think of this -- I am not the only non-visual artist out there anymore which means that for all of recorded history there have been zero blind painters, and now all of a sudden there are more and more every year. That such a fundamental change could happen in the art world - we do call it the visual arts after all- which would seem to preclude the inclusion of non-visual people could happen in our lifetimes is thrilling, and the reason is both simple and accidental.
The truth is that the approach that modern techniques use to help non-visual people travel independently through a sighted world has a lot in common with many of the ideas valued by the visual arts at breaking down in understanding a composition. In other words, visual artists have been trying to understand and break down what people see into simpler forms that are easy to understand and convey to others for centuries. This is exactly what Orientation and Mobility specialists are trying to do for blind people now. In the past these two worlds have always remained a part, but I was lucky in that I had experience as an artist before losing my sight. This alone wasn't enough; the other major factor was a new access to information that has never existed before. In the past visually inherit people would have to rely on Braille books (these are books that others choose to Braille taking that it may be worth a blind person would be interested in reading and so the selection is extremely limited), books on tape were better but still required a lot of time to produce which made it impossible to casually select books - in other words if you hear about a book and think you might like it your only choice would be to have the entire book read and recorded, and then weeks to months later when you get it back you might realize in 10 minutes that it wasn't the right book for you. Now with computers you can scan and read books instantly, but more importantly you decide which books you want to read -- this may seem unimportant, but it gives you access to anything that has ever been printed -- including books on art. This was a vital resource for me because even though I had a background in art this really only raised more questions than answers for me, and the access to information gave me ways to find the answers. This led to my Touch to Sight techniques.
What is Touch to Sight?
There is a misconception that visually impaired people learn to see faces by touching them; a myth that is reinforced by many movies and TV shows. Visually impaired people will touch faces in order to try and visualize, but until now there has never been an actual system that allows a blind person to get a completely accurate picture. These techniques though aren't just for the visually impaired. Anyone who works with their hands can benefit. Firemen who are having to search through darkened rooms and through smoke with her hands, policeman doing pat downs, technicians and mechanics having to reach down and work in areas where they can't see but only feel, doctors palpating areas of the body -- really anything that requires touch.
Basically touch to sight is a method that allows you to link what you are touching with everything else you are touching in a natural and quickly understandable way. For instance, the ear is broken down into three areas -- the top, the middle, and the bottom. Each of these areas are broken down further, and for each area there is a ‘norm’ and what you are determining with touch is how that particular area deviates from the norm. This gives you something much easier to remember than just trying to think of what angle a certain curve is over exactly the distance to travel. Then you move to the next area and you see how that deviates. Each area naturally flows into the next, and the more you feel the more information there is, and actually it becomes easier to remember because it builds a picture in a very logical way. With practice this becomes faster and faster, and very quickly into something that you can do without even having to think about it. It follows natural principles to such an extent that your brain quickly adapts. It does take time -- especially for a sighted person, the reason being is that a non-visual person practices all the time every time we touch something. What you get as well is an incredibly detailed image -- far more than if you were using your eyes. The reason is because the fingertips were designed to take in fast amounts of detailed information very quickly - all you are really doing with the technique is just ordering that information so that it is easy to remember when it comes to building an image.
It may sound difficult, but invariably the people I have shown the technique to are amazed at how simple it actually is, and how much more they are able to perceive that even with their eyes.
Can you tell me more about blindness?
Ignorant, irrational, unreasoning, senseless, unaware, inconsiderate, oblivious, thoughtless imperceptive, dim, goalless, purposeless, and many more are all synonyms to the word blindness. If my work lends any credence to any of these words, validating them in your mind, then I have failed. The oldest and greatest fear that I can remember – stemming even from my childhood was to lose my sight; fear because I lacked understanding. I could not imagine how life could be made more different than by losing your sight – what changes would occur but they would have to be radical. Change can be a very scary prospect.
There is a misconception, one that I too suffered from when I was sighted, that in order to understand something and visualize it accurately it required eyesight. This idea is even in our language where when we want to convey to someone that we understand an idea we will say, "I see." If someone does not know a concept or idea it is said that they are "blind" to it. I don’t want to give the impression that I feel people are actively thinking negatively towards blind people, but historically there has been a misunderstanding. This misunderstanding of thought has led to a living reality where even many people who are visually impaired believe in limitations that have no basis in logic or fact.
The truth is that while losing one's vision can be devastating; there are adaptive techniques, technologies, and strategies that are actually quite breathtaking. For example: Orientation and mobility specialists are people with advanced degrees who spend all of their time just thinking up new ways and adaptations for visually impaired people to do things. Technology has evolved to the point where Braille is becoming obsolete. I can read a book through my computer or surf the Internet as fast, or very often faster, than a sighted person. Programs like Jaws and Kurweil (there are many more) convey information from a book or a computer screen into an audio format that is extremely fast and easy to comprehend. Even travel techniques are constantly being perfected. Even with a cane I was able to travel alone across the country, or across town. Now with my guide dog, Echo, who has been trained in the most up-to-date techniques and methods I can travel anywhere that I want to go with barely a thought. It took a lot of work, but no one said that life was going to be easy. Actually, I think that all of the effort a concentrated attention that it required for me to be able to live my life now is I do actually make me appreciate it more.
When my son Jack was born, I was able to feel his face moments after his birth and laid upon his mother’s stomach. I felt as he took his very first breaths. I thought I understood color, but what I felt at that moment, and the colors that exploded through my brain changed my painting ever after. I very well may have been the first blind man in history to have this experience because of the touch to site techniques; techniques that allowed me to see my son’s face in exquisite detail – detail that would allow me to remember every bend and twist of his ear, the exact placement of the wrinkles on his hands, the spacing of his lips as he made his first sounds. Details that might be lost on even the most keenly sighted person.
What are your views on disability?
I was sitting in a coffee shop one day and an older lady came over and patted me on the arm and said that she was so sorry that I couldn’t see what a beautiful day it was, and the way she said it, very sweetly and nicely, but I could tell that what she meant was that she felt that I wasn’t able to appreciate the day – that it unfortunately was lost on me.
I think I understand why. Everyone has had the experience of having the lights suddenly going out, and even if you are in your own house, the place that you know and like the best – it can suddenly feel very alien and dangerous to be unexpectedly cast in the dark. I think that when most people think about how I must perceive the world they take their experiences of being without sight and equate that with what it must be like for me or other non-visual people.
In truth - in the cafe that day the music coming from the speakers colored the air; the conversations and laughter drifting from the tables did the same. The smell of the perfume from the woman sitting next to me was like clouds of rose and violet. The rough wood grain of the middle of the table had a different hue than the worn edges. To someone using their eyesight there probably would be no difference in color, but to the touch the tones of the color were very different. Very often when I turn the volume down on the sound system in my studio it isn't because the sound is too loud, but because the color is too bright or too overwhelming and is distracting me from what I need to be doing. I think it’s ironic that in that coffee shop I would probably be the last person that anyone would to ask about color, but I might actually be the one appreciating it the most.
Perceptions are interesting in that way…
Somebody can look at the blindness and say, “Hey John. You’ve got a real problem.”
That’s true, but I have a million problems. We all do. We have this idea that adversity is an obstacle that needs to be gone around; or we have to work our way through before we can get on with life. That any joy or achievement in life lies on the other side, and not only do we need to deal with this barrier, but to ever hope for happiness again you must manage to remain as untouched by the experience as possible. To remain unmarred by the adversity.
This means that a person with a disability is stuck.
I reject this idea; I don’t think it has been thoroughly tested.
It is inaccurate and makes dealing with problems much harder than it has to be.
I think the people we admire most are the people that have been tested by life; have been shaped by their experiences and learned from them, and that’s why we admire them.
It is not a question of whether or not we are going to have adversity in our lives; the question is what flavor of adversity are we going to meet with, and how we are going to face it.
In a way; I am glad that I became blind. This makes more sense when you stop thinking about adversity as an obstacle, and start viewing it as an experience – something that you can learn from and grow from. I know in painting I have learned more from my mistakes than I have my successes. (To any art critics out there – I never make mistakes in the studio; everything I do is genius – To everyone else; I do some crazy things in the studio; I’m a curious person so I’m always trying new things and trying out new ideas) At least when I am having difficulty I know that I am pushing the limits and boundaries of what I am capable of. If things are easy then I am just coasting. Every moment shouldn’t be a struggle, we need to rest and relax – these times are just not necessarily our most productive times though.
I think we should wear our scars -they might just be the most interesting aspects about us.
When we understand that adversity is a perception then we can understand that our idea of disability is merely a point of view as well.
I’m not a person that is incredibly concerned with being politically correct. I was chair of a mayor’s committee once and accidentally used the word handicapped instead of the preferred term ‘people with disabilities,’ and was politely reminded of my mistake. And they were absolutely right because words are the way that we learn about the world – as children it is the dictionaries, thesauruses, and encyclopedias that give them their viewpoint of the world. Let’s look at the word disability – the preferred label:
Disabled - 1. crippled; injured; incapacitated.
Synonyms: helpless, powerless, confined, handicapped
According to this the opposite of
being disabled is being healthy – it is difficult to imagine how it might limit a person who bears the label of disabled.
The problem with handicap, disability - all of these words is that they still demarcate a division between what we perceive now as normal and what is not. This idea of normal is a perception that changes between every culture and every generation, from city to city, and even from clique to clique in a single high school. Surely as adults we can rise above this high school mentality of putting people into groups; of mandating what is normal. Normal is a perception, and as art lovers I think we know just how malleable our perceptions can be – which also means, alternatively, that we have the power to change them and to shape our own future.
Who is disabled?
According to the last census 20% of the population is listed as having one type of disability or another. That is a huge number, but why even count how many people with disabilities are out there? The reason is so that the local, state, and federal governments can calculate what sort of accommodations are going to be needed. Typical accommodations are things such as elevators, curb cuts (these are the areas of a sidewalk that dip down to street level so that wheelchairs, strollers, and hand carts can just roll right up), bigger bathroom stalls (I don't think I have ever been in a bathroom and heard someone complain that a stall was too big), and doors that are easy to open. These are all features that everyone uses - particularly though the elderly, those with injuries, families with young children in strollers, anyone carrying something heavy, or someone that just wishes to get into a store without a lot of hassle. Most large businesses have quickly understood that if their store is user friendly, users will want to use their store. Places where the service industry is dominant are typically some of the most accommodating areas -- visit Las Vegas and the big casinos and you will be hard-pressed to find an area that is not accommodating in some way - it just makes good business sense. The truth is we all use these accommodations and unless you never age, become injured, have a family, have an illness or just have a day when you’re extra tired then you may never use an accommodation. Even Superman himself would not fit that bill. I feel that disability is merely a perception that we have - a label that we use when people face certain types of limitations. We are all limited in one way or another, and we all need assistance from time to time. One day perhaps we as a culture will move past the need for political correctness, and labels, but in this moment it is up to each of us to take it upon ourselves to focus on the aspects that are exceptional and make each of us unique, instead of obsessing with our limitations.