by Erin Jepsen
From the Editor: Sometimes I find myself complaining about the blurring I perceive between opinion and news, about the tendency to elevate the reporter above the events he reports, and about how easily we accept one side of a story without demanding the other side and then some considered discussion of the conflicting points of view. When we carry an investigative piece, the Monitor tries to talk with those who are complaining and those who are the target of the complaints. We certainly do weigh in with our synthesis of what we have been told and have observed, but we also hope to give readers enough information to draw their own conclusions about what has been reported.
What follows is not an investigative piece. It is clearly a strongly held opinion, one that may cause those of us who consider ourselves progressive in the way we think about blindness to question whether we appreciate all that our senses can tell us or whether we simply appreciate having them, poor substitutes though they may be, for the sense of sight.
Here is a perspective from the mother of a blind child, a mother who has some sight but considers herself blind and thinks there is much to appreciate in being so:
Have you ever been asked, “Do blind people dream in color?” I’d like to answer that question, but not in the way you might think. I’d like to say that blind people need to dream more in color, not literally, but metaphorically. Let me explain if I may.
A chronic condition exists in our world that desperately needs changing. We have chipped away at it, but still it lurks in our culture, in books, in movies, in conversations, and in unnecessarily limited expectations. We’ll call it “sightism” for lack of a better term, and, quickly defined, it’s the belief that being sighted is fundamentally better than being blind.
Historically, the “medical model of blindness,” as it’s called in academia, is partly to blame. The thinking goes like this: Diseases, illness, or accidents cause blindness, so it is obviously to be combated and cured by the medical community and by research. Eye doctors spend years of study and millions of dollars to learn how to restore sight. Blindness is not an ideal part of the human condition, so its reversal is better than its acceptance. Historical literature paints the blind man as a second-class citizen, unable to support a family, unable to function independently, and devoid of power in any sort of social sense. The Bible also has several examples of Christ restoring sight, which carries with it the assumption that the lives of those so touched will be vastly improved.
In modern culture we, the politically correct enlightened few, assume we’ve evolved beyond this demeaning form of oppression. Here’s how our modern thinking tends to run: Of course a blind man can work! He’ll simply use his iPhone as a sort of replacement sight and go on with his business. Technology today has advanced so far that we’ll soon have self-driving cars and artificial retinas. Stem cells will likely re-grow entire eyes if put into the right petri dish.
Yes, I’m being facetious, but I wonder if you can spot my point? Replacement eyes. New eyeballs that work. Sight, sight, sight. Valuable—you bet. The end all and be all of human existence—I don’t buy it.
I’ve been told that humans use up to 70 percent of their brains to interpret visual images. [Some literature alleges that 90 percent of learning comes through vision.] I was told this during a vision screening in which my own visual condition was cross-examined. My brain apparently processes visual images incorrectly. It brought into focus for me (sorry about the pun) the trouble the sighted world has with the idea that someone could function normally without that 70 percent of visual input and still have a rich sensory environment. I get it. Simple mathematics dictates that a blind person uses only the 30 percent that remains, right? Well, we all know that isn’t true. The brain is more flexible than that, and, while I don’t buy into the delightful myth of superhuman hearing, a la Daredevil, I do know that the brain appropriates visual processing centers in order to interpret shapes read by the fingers as well as aural input. Echolocation is one example.
Still, people have a hard time believing that this is adequate. Even the blind community has a pervasive attitude of sightism running through it. Stick with me here. We’ve been told our whole lives that, while blindness is okay, sight is better, right? The sighted parents receive news that their child will be blind for life, and how do they react? They weep. The child hears them weeping and begins to form an image of her own unfortunate circumstances. This carries through to the undereducated (through no fault of her own) blind adult who cannot hold a job because she has never been expected to ride public transit by herself, the man who never learns to get along with his co-workers without demanding special treatment, and the woman who is incapable of working current technology because her school provided her with technology from 1965. In writing this I’m not shaming us, but I’m pointing out some simple facts. We all know these blind people. We are them.
I have low vision. I’ve been denied jobs because the potential employer had known an incompetent blind person and assumed I was also incompetent. There is room for change.
Family, acquaintances, and strangers weekly tell me things I should believe about myself and my daughter, who is blind. When she confidently runs around at church during music practice, I invariably have someone tell me that she can surely see better than we think she can. (Uhm, prosthetic eye, anyone?) The underlying assumption that confident movement can be achieved only with sight is unquestioned. When I refute it, amazement and the dreaded word “inspiration” often follows. When she had surgery on her eyes, people asked me if she could then see better. They ask me if they might pray that her sight would be improved. I won’t go into my observations about our faith in the medical system as contrasted with our faith in the Divine. While I do believe in Divine healing, I believe more in Divine guidance, and sometimes we really do walk by faith and not sight. Did you hear me? Not sight. As in, that’s okay.
The civil rights movement in our country focused our attention on race. It showed us that people with black skin could be employed if they were allowed to be educated. It showed us that black people were not content to sit at the back of the bus or to be treated as second-class citizens. It showed us that the rusty old “colored” drinking fountain next to the refrigerated “white” drinking fountain would no longer do and that shoehorning black adults into menial labor jobs was no longer acceptable. As a country we discovered that people of color were equal in every way to white people. It took time for this idea to sink in. It took a lot of work. But, for a lot of us, it has finally penetrated our skulls, and, equally important, it has made its way into our hearts—both are required for real awareness and understanding that people are equal, no matter their race.
Now let’s talk about disability. I’m tired of sitting at the back of the bus too. I’m tired of people weeping over blindness. I’m tired of literature equating blindness with death, with sin, with darkness and fear, and with ineptitude. I’m tired of being seen as superhuman or subhuman, and, never oh never, just human. I’m tired of viral videos showing a six-year-old boy stepping off a curb for the very first time with his white cane as if that is a good thing. It’s not a good thing. Eighteen-month-old babies step off curbs for the first time, not six-year-old children. I’m tired of reading about 70 percent unemployment rates for blind adults. I’m tired of Braille charities that “bring light to those in darkness.” Well, excuse me, I’m not in darkness. My visual condition happens to have a little too much light as a matter of fact. I’m tired of raising money to fight against my blindness. I don’t raise money to fight against my brown hair, my five-foot-ten height, or my Caucasian skin. If I raised money to fight my daughter’s African skin, I’d be accused of racism, and my accusers would be right. I don’t need to fight against who I am, and, more than that, fighting against the way I perceive the world robs the world of my own perception and of my own voice and message.
The medical model of blindness is fine as far as it goes. The social model steps a bit further and insists that blindness, when incurable, can become a normal condition of existence and should be accepted as such. Well, that’s all nice, but do I merely accept my daughter’s African skin? By no means! I embrace her beauty. I tell my bi-racial son that his brown skin is gorgeous, which it is. I tell them that their beautiful hair is so much fun. I tell my white children the same. I adore my multi-colored family, and my adoration opens the door for those around me to adore them too.
I draw attention to race only to illustrate a parallel between accepting differences in race and accepting differences in sensory ability. Just as rejecting racism ultimately relies on appreciating one another’s differences, rejecting sightism goes far, far beyond simple acceptance. Merely existing in spite of our blindness isn’t good enough. Secretly wishing we could see won’t cut it. There is a point beyond simply living with our blindness--actually enjoying it. There is a point where we realize that we have a unique perception of the world that sighted people don’t have. This perception adds richness to the tapestry of human existence.
My daughter who is blind has a rich perception that is unique to her and is in no way less than that of her sister who is fully sighted. If I go around telling my blind daughter everything I see and describing the world to her so that her poor pitiful dark world will be just a bit fuller, then I am sending her the subtle message that the things she notices are less meaningful than the things I can (sort of) see. People who tell me I am blessed because of the limited sight I have discount the wonderful things I possess as part of my blind self. I want to tell them that the unique way that I have always perceived the world is important, even if it is different from the way they perceive it!
Remember the scene in Dead Poets Society where the teacher stands on his desk to the consternation of his strait-laced, rule-following prep-school pupils? He is trying to get them to see the world in a new way, a different way. He is trying to broaden them. At the end of the movie, the tearjerker scene involves a student standing on his desk, as if to say, “I learned what you were trying to teach. I get it. I’ve changed.”
Guess what? We blind folks were born standing on our desks--or that illness or accident forced us up there. We see the world in a different way. That’s not a bad thing; it’s a wonderful thing. It’s a broadening thing. The world needs us: not to give them inspiration, not by stepping off curbs, but by being ourselves. By experiencing the world in the way that we experience it, by looking at things from a different angle, we enrich the world.
I read an article which said that architecture designed with a blind user in mind ends up being more functional for the general population. In the same way that embracing the beauty of all colors of the races and all of the variety found in the world’s many cultural traditions makes us stronger, so too does embracing our diverse abilities. These must be seen as valid ways of perceiving or navigating the world so that they can bring a richness of experience, a diversity of thought and problem-solving that cannot happen when vision is considered to be the most important of our five senses. We close doors leading to significant human experience when only mobility using two feet is considered, when only hearing is considered, when only neuro-typical ideas are deemed valid.
This shift in thinking about blindness has to come from the blind community first. For the sighted world to see us as competent, we need to begin seeing ourselves as possessing a truly valid perceptual experience. We need to question the sightism that goes on around us constantly. We need to sit in at the sightist lunch counters and insist that we belong there. We need to appreciate the blind artists who showcase the beauty of our perception to the unaware sighted world. We need to insist that blind actors play blind roles in Hollywood and discontinue the shameful but Oscar-winning blind-face practice that goes on there. We need to keep on working for equal access to education and transportation. We need to push back gently against teachers of the blind who teach reliance on poor sight over learning essential blindness skills.
I’m not discounting the frightening experience of sight loss. Any change like that is bound to be unsettling; I’ve gone through it myself. I’ve gone through the identity shift that rocked the very core of my existence when the person I thought I was is the person I no longer am. I’ve been there. I have. It’s okay. Stepping up onto that desk is scary at first. After a while, though, you find your balance and look around, acknowledging that what you observe is still reality, but reality from a different point of view.
Because of the Civil Rights movement, I can adopt and raise black kids to have a wonderful future and embrace them for the color and race they are. I hope that in twenty years my partially sighted and blind children can have as bright a future and be embraced in their families and workplaces for the valuable contributions they make and not merely accepted or accommodated. Like the inimitable Dr. King, I have a dream: just as racism is dying, that sightism and ableism will die the same death, that the medical model will no longer be used as an excuse to discriminate and push us to assume second-class citizenship. I dream that our blind kids will join the ranks of tomorrow’s chemists and doctors and actors and engineers, as well as bricklayers and fast-food workers. I dream that we will never again hear stories of blind parents having children removed by Children’s Protective Services because they are both blind. I dream that inclusive architecture will be standard because the people who directly benefit from that architecture are valuable enough to be worth it. I dream that our children won’t have to spend their energy fighting for equal access to science laboratories but instead can spend their time and energy researching. I have a dream that all Braille teachers not only will read Braille well, but will tell children that learning Braille is as easy as sighted kids learning to read those squiggles and lines they call print. I dream that blind athletes will continue to strive for world records. Not only do I dream for the newsmakers, but I want to see a world in which blind people who want to live quiet, peaceful, non-record-breaking lives without being interrupted by a constant stream of acquaintances calling them inspirational will be free to do so. Let’s dream together, shall we? And then we’ll tell the world of our beautiful, colorful dreams.