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August 31, 2009
Dear President Obama:
I am a mom who is blind. I have four children, two of whom have normal vision while the other two have inherited my eye disease, regors anomalies. This is a disease which has congenital glaucoma as one of its components. My last daughters were born with this eye disease. Because the youngest learned Braille as a small child and has learned the proper skills, blindness is mostly a nuisance. My other daughter, however, has experienced many crises in her life because she has had more vision. I know that this seems strange, but, as you read her powerful prose about her struggle with her not quite perfect vision, I believe you may understand a little more why it is so important for children with less than perfect vision to learn Braille. Being painfully aware of Jennith’s struggles, I suggested that she begin to write down her feelings and experiences because I felt it would help her work through her feelings of being a failure. Here is what she wrote:
The first time I remember feeling severely limited by my vision was when I was fifteen. I had had a surgery that summer to coax my skyrocketing pressure back into a safe zone. Every surgery brought more vision loss. I started school, excited about my junior year and all the things that fifteen-year-old children value. The first day of school I wore my black puff sleeved T-shirt and gray-green jeans; my hair was short and red, and I couldn't imagine being more adorable and ready. I had three AP classes at which I knew I would rock because I had rocked the last year. Chemistry was going to be hard, but the teacher was amazing. Drama would be Drama--all the posturing and pretending I needed.
It was in Chemistry that my left eye hemorrhaged. I'd just finished a quiz, and a spot appeared, floating around on the paper. I knew it was my eye, but I got bubbles and blurries and blots all the time. I wasn't worried. I walked home like normal, making up some ridiculous story for my friends, zigzagging on the sidewalk with laughter. As soon as I got in the door, I took my contacts out; the spot had gotten bigger, and I was not seeing well out of my left eye. I thought of saying something to someone, but I had stuff to do, people to call, gossip to report.
By the time I'd had dinner with my family, almost all the vision in my left eye was obscured by blackness. I knew then that this was more then a blip on the radar--this was the Red Baron. When we called my doctor, he said to meet him at the office immediately. He knew what the signs could mean, even if I didn't. The office was very different in the late evening. "I think it's hemorrhaged," he said, "In the vitreous chamber. But there could be retinal detachment. We need to get you an ultrasound." It turned out that my retina was fine. But my left eye would stay black for weeks. I could see the blood moving around--the blackness dancing in the underground of my eye. It was beautiful. That's when I began to fail classes.
I had never been a terrific student, but neither had I been a bad student. I was lost and drowning with one eye out, no individualized education plan (IEP), no Braille knowledge besides the alphabet and the contractions for P and K, and a complete lack of skills pertaining to low vision. The three AP classes had a normal college course worth of reading, and the print was tiny. I remember trying to make cards one night for AP art history. I squinted the whole way, concentrating on the words, hoping that they'd expand or start speaking. But they didn't, and my Renaissance history cards were left blank.
Chemistry, with its baby numbers in the periodic table, became worse; in AP language, book after book was assigned that I attempted to read, but then I would put each down. I did finish one: The Things They Carried, by Tim O'Brien. I didn't notice then, but looking back it's quite obvious why. The print was larger than Hawthorne, Kafka, and James. AP U.S. history became a joke--my knowledge to this day of American history is laughable and filled with holes left by pages of unread text.
The blood cleared up, but my problems did not. The headaches were blinding and frequent. I was brilliant at tests, and that saved me time and time again. As long as the reading was at a minimum, I did great. I learned a coping technique that semester and school year. If you can't do it, don't think about it. Don't even think about why you can't do it. Just close your eyes, shake your head, and do something easier.
My parents did the best they could to help. My mom and younger sister are both blind--none of this partially sighted nonsense. My mom asked an itinerant teacher friend to order my AP U.S. history textbook from Recording for the Blind and Dyslexic. I tried listening to the recordings, but I gave up quickly, unused to the tape player, the dry text, and the failure it represented in me.
Don't think about it: this became my motto. I had no desire to examine what was happening because I already knew the answer. I was sick of the headaches and the eye aches. I was sick of the failure when I actually tried. I was sick of what it all meant. I loved my mother and respected her. I thought she was fabulous and didn't think blindness made her any less a person. But when you are faced with your own instability, knowing this intellectually means nothing. I did not fit in with my peers anymore--not that I ever felt that I really had.
I had a class the second semester of that school year in which I worked with students with severe physical and developmental disabilities. I remember walking into that classroom, hiding from my own disabilities, and feeling the sudden shock of being at home. I was unquestionably accepted by these students--my failures and my headaches and eye aches were nothing to them. I thrived in the class far more than my other normal peers. I was able to examine disability as an important self-identity--as something normal and okay, but I couldn't do this as it applied to me. I could accept it in everyone but myself.
I did terribly that school year. I took two out of three AP tests and just barely managed to pass one while getting the highest score possible on the other. I got Ds in both classes, mostly because my teachers did not want to fail me. In drama, for those last few weeks of the school year, we worked on improvisation. The secret to improv, as any student will tell you, is never to say "No." You can't; it destroys the scene, takes the audience out of it, and shows a lack of partnership between the players. No, you must always say "Yes." I could never say "Yes, and?" I was too good at saying "No." That's when the depression started getting worse.
My senior year started abysmally. The one bright spot was working in that same classroom with students with disabilities. I'd completely rearranged my schedule in order to intern there. I didn't care about graduating as much as I cared about being with the students I loved and who accepted me. I worked hard there; I was beloved by the teachers and students alike. When the high school intern director started asking questions of the teachers there because I wasn't showing up to the special intern class she taught or doing assignments, they were completely baffled. They thought she was talking about a different student. My actions in classes where I could succeed and where I couldn't were like that. At my internship I ran and danced and taught lessons and helped calm students, working with every student, even those who sometimes resorted to aggression and violence. I was never still, always pushing what I could do, always trying harder and harder. My vision here was insignificant. But back in regular school, ruled by pen and print, there were headaches, failures, uncompleted assignments, and reading I couldn't do. I couldn't face that. Turning that way, I might look into the face of the shadow that leaped in and out of focus in my peripheral vision. I'd rather look straight ahead and fall into a ditch than look down, over, and into the dark face with black holes for eyes--real black holes, consuming supernovas, asteroids, and me.
Though this story is not as unusual as one might think, I will say that this child dropped out of high school and took the GED. She then began college, failed her first semester because of her eye difficulties, and has finally begun a program through the National Federation of the Blind. She is at last learning Braille, cane travel, the use of technology, and methods for doing daily tasks using blindness skills. As her mother I find it heartbreaking to read her sad tale, but I am thrilled that she is successfully learning the skills that should have been taught to her much earlier. I know that the day will come when she will be able to view her blindness as a nuisance as I personally see my own blindness.