By Sue Lichtenfels, PCB First Vice President
The mission of the Pennsylvania Council of the Blind is to promote independence and opportunities for people with vision impairments. While our advocacy efforts usually focus on getting legislation passed or public policy makers to implement accessibility measures, educating our communities about the reality of vision loss, what it is, and what it isn’t has always been an on-going effort. Through the years PCB has made use of the recognized avenues of public education: radio-based public service announcements, brochures, and speaking engagements. Finding these marginally effective in today’s tech-savvy world, we believe that the time has come for a new approach to removing the most basic barrier to independence and opportunity– misperception.
Across the United States and around the world, people with vision loss are routinely categorized and stereotyped. Upon hearing the word “blind,” sighted individuals often make unfair assumptions about the individual with vision loss. The misperceptions usually fit into one of two categories on opposite ends of the spectrum: People with vision loss are viewed as incompetent and needy, e.g. they are looking for handouts or need money; they are dependent on others to cook, clean, launder, dress, and generally support them; they are unable to work or be contributing members of society; their dog guides and/or children take care of them; their lives are dark, difficult, and unhappy; and the like. When people with vision loss are not perceived as standing around with a hand out, but instead are working at a job, swimming across a lake, or hiking a mountain, they are touted as “inspirational.” This often patronizing perspective pats people with vision loss on the back for either achieving the lowest of society’s expectations for them or for demonstrating what is perceived as their incredibly super-human senses. Unfortunately, these misperceptions have become the basis for society’s image of people with vision loss.
Often these misperceptions are fueled by fear of the unknown. Although the number of people with vision loss in the world is enormous — 285 million according to the World Health Organization — the incidence of blindness is relatively low, approximately 4% of the world’s total population. This means that there are billions of people in the world who have never met or interacted with a person with vision loss. These billions of sighted individuals believe blindness leads to a dark, dismal life without purpose and joy. In the 2010 Eye on Eyesight Survey conducted by Surge Research, seventy-nine percent of the 1,050 respondents believe other than their own death or the death of a loved one, losing their eyesight is the “worst” thing that could happen to them. The overwhelming majority of sighted people have no first-hand point of experience with blindness or someone who is blind and therefore rely on images they see in popular culture to shape their perception of people with vision loss.
Unfortunately, as we all know too well, people with vision loss are often inaccurately portrayed in books, movies, and television programs, compared to the real lives of “average” persons with vision loss. It would seem the drama of the struggle that we “endure” every day is too irresistible to avoid exploiting. Not only do these bastardized images make a good story, but they make a great stereotype. I have encountered two such disturbing images of “the blind” in the past few weeks that I wish to bring forward for your consideration. The first example has been proliferated for nearly sixty years while the second is a more recent example from pop culture.
Several weeks ago I met with representatives from The Children’s Museum of Pittsburgh regarding a potential partnership to offer blindness awareness activities during this October. Typically October is designated as Blindness Awareness Month in Pennsylvania. As part of our discussions, it was suggested that the museum’s monthly movie night for October could be an audio described film. I offered to gather feedback from blind movie watchers and investigate what movie options might be appropriate for this event.
I began my research by visiting ACB’s Audio Description Project on the Internet. The site lists all of the DVD’s that include an audio description track in the USA. That is when I learned that the 30th Anniversary Edition of the 1979 TV Version of “The Miracle Worker” is audio described. Here is where I show my ignorance. Hard as it might be to believe, I as a blind person had never watched, seen, or read “The Miracle Worker.” Generally, I knew it recounted the story of Annie Sullivan’s triumphant effort to teach Helen Keller, a deaf-blind child, how to communicate. In my ignorance, I thought, “Wow, would this not be a great film for the museum’s movie night?” I clicked on the sample audio description for the movie. And that is when my stomach lurched in a visceral response to what I was hearing.
The audio describer did an absolutely fabulous job of bringing to life the scene where Annie struggles to teach Helen how to eat eggs with a spoon from her own plate. In this nine-minute excerpt, Helen’s actions include kicking on the floor, pinching and slapping Annie, pounding on the door to get out, climbing onto the table, crawling under the table, flailing her arms, banging on the table, eating with her hands, licking her plate, repeatedly throwing the spoon, spitting eggs in Annie’s face, and rolling on the floor with Annie. Could there be a more damaging portrayal of how blind and/or deaf-blind people act? Since William Gibson’s 1959 creation of “The Miracle Worker,” millions of people have experienced this disturbing scene on television, in movie theatres, in print, and on countless stages. Readers can listen to this audio described scene for themselves at www.youtube.com/watch?v=n5enRm9a1Dk.
The second, more recent example of a troubling portrayal of a person with vision loss takes place in best-selling author Danielle Steel’s “A Perfect Life.” In it, the character of Salema is a young woman who has lost her vision due to type 1 diabetes. Blaze, Salema’s mother, sends her off to a residential school for the blind where they can manage all of her needs. Despite graduating from the school, Salema continues to live on-campus because it is “easier” for her. Meanwhile, Salema has a live-in, 24-hour personal aide who has totally infantilized Salema. The aide dresses her, bathes her, brushes her hair, puts toothpaste on her brush, cooks for her, cleans up after her, guides her everywhere, and essentially treats her as an invalid. Unfortunately, Salema is entirely comfortable with this arrangement and is completely incapable of doing anything for herself when the aide unexpectedly dies from meningitis. When the school is closed to avoid an outbreak, Blaze is forced to bring Salema home to New York and hire a new aide. Fortunately for Salema, this aide eventually makes her learn independent living skills. Unfortunately for us, once again, we have these unflattering, stereotypical attitudes about the blind front and center in a mainstream novel. This book was released in July 2014 and sold over 30,000 copies in its début week. Considering the various formats — hard cover, paperback, audio CD, MP3 download, e-book, and library loan – it is difficult to know exactly how many people (at least hundreds of thousands) have read this novel since its release. The book is available through the National Library Service as well.
While both “The Miracle Worker” and “A Perfect Light” in their own way tell the story of overcoming the challenges of vision loss, one must consider the damaging images that are used to distort the nature of our situation. According to many researchers of psychology, there exists in the human brain a “Negativity Bias.” This means the brain is extra sensitive and responsive to negative messages and experiences. People are impacted more fully by negative ads than positive ones. Reactions to personal criticisms are much more intense than reactions to compliments. Unpleasant news and negative images stay with people longer than positive or neutral information. And so, when people with vision loss are portrayed in popular culture as helpless, sedentary, and financially dependent, sighted individuals latch onto these negative images and the stereotypes persist.
For those of us with vision loss, the struggle to overcome the negative image that the sighted world has of “the blind” is a daily undertaking. We must, however, find our voices and speak out to counter this negativity in existing and future representations of “the blind” in popular culture. Because the sighted world has been seeing and hearing about negative images of people with vision loss for as long as books have existed and mass communication has been in use, changing perceptions will require a long-term, comprehensive effort from people with vision loss across the globe. Since there are more than three billion Internet users and nearly 1.5 million active Facebook accounts, it makes the most sense to begin this re-imaging through an online platform. PCB is currently working on launching such a campaign and invites members to join the effort.
TheReImage campaign will re-create the images of people with vision loss while establishing new possibilities. The foundation of the campaign is TheReImage.net website which will be targeted specifically to the sighted world. By way of the site, TheReImage aims to provide a mirror that reflects the true image of people with vision loss, free from the foggy haze of stereotype. Through the written word, audio productions and video clips, the content will emphasize shared human experiences as parents, siblings, workers, friends, citizens, etc. The goal is to have the sighted world view vision loss as incidental to who the individuals are as people. The stories will focus on our lives as experienced through all of these other roles. By consistently moving vision loss to the background of the stories, the site aims to shift the sighted world’s focus off of the disability and onto the person.
For people with vision loss around the world, TheReImage offers us an opportunity to unite, while emphasizing our individualism. Together, through our stories based on the many “normal” aspects of our lives, we can counter many of society’s misperceptions about people with vision loss. Let us tell our stories, not about how we lost our vision or what great resources are available, but about our experiences with raising children, owning a home, taking a trip, enjoying the outdoors, working at a job, spending time with friends, dealing with family issues, managing a household, relaxing with a favorite hobby, getting an education, and the like. In preparation for TheReImage site launch later this year, stories and story ideas can be emailed to content@TheReImage.net. Submission guidelines and sample stories will be available on the temporary page at TheReImage.net by July 1, 2015.
In closing, I ask that you consider this analogy. If believing the misperceptions that popular culture has created about people with vision loss were a disease, we would have a global epidemic on our hands. You and I know this is the truth because we experience the effects of the misperception disease many times a day in our conversations and interactions with people who have sight. We are the only doctors trained to develop and deliver the antidote. Join TheReImage campaign to help treat the misperception epidemic.