Breaking Down the Barriers

by Sally Hobart Alexander

Nearly forty years ago, like the students profiled in this monograph, I faced adulthood and the challenges of moving from the familiar to an unfamiliar world. At this time, I could still see and hear and took a teaching job in southern California, three thousand miles away from my family. I found an apartment on the beach and a group of friends.

But then, my health played a trick. I began to lose my sight from mysterious retinal hemorrhages. At twenty-six I became totally blind, and at twenty-eight developed a hearing loss that again mystified doctors.

With no skills to perform daily tasks, I entered an excellent training program in Pittsburgh, Pennsylvania that restored my independent functioning and self-confidence. I decided not to continue teaching, since my Braille skills were slow and my faith in controlling mischievous third graders weak. I completed graduate school in social work, took a job as a child therapist, and married. After my children were born, I became a writer, publishing books that dealt primarily with blindness. Because of the books, I’ve been asked to become a speaker and, once again, a teacher.

Soon after the rehab training, I developed a mild hearing loss during graduate school, forcing me to miss class for appointments and hospitalizations. In 1987 when my children were 11 and 8, I lost significant hearing in my left ear, making it hard to hear my children’s voices. Soon I was forced to wear a hearing aid. In 1999, additional hearing loss demanded that I wear a hearing aid in my right ear as well. Now at age sixty-three, I await new and even more powerful aids that will enable me to continue my teaching career at Chatham University and duties for two writing groups that I facilitate. Fortunately, my speech remains intelligible and my residual hearing is sufficient enough for communication in most settings; however, my hearing continues to deteriorate. Even though I am totally blind and consider myself moderately deaf, I never self identified as a deafblind person. I associated this group with the remarkable Laura Bridgman, whose biography I’ve just published.

The stories in this monograph of these articulate students resonate with me. I understand the tedium of struggling to hear in crowded situations. I appreciate the experience of being the lone disabled person in a classroom or work place. The pressure of having to work harder to keep up with my non-disabled peers, and the extra effort required to fulfill expectations imposed by those who think I represent all disabled people in the world. But I also enjoy the uniquely comical circumstances that result from having a disability. For instance, I sometimes hear more interesting dialogue than is actually spoken.

“I had a date last night,” a friend began, and I interrupted.

“Did you and Gary split up?”

She laughed. “No. I said debate, not date.”

But many interactions aren’t humorous. I remember being the only blind graduate student with professors who didn’t know how to administer tests to me. I explained that I’d bring a reader and typewriter and asked only one accommodation from them—a quiet room. Instead, my professors supplied access to the nearby lavatory with flushing toilets and gossiping coeds.

Thirty years later, federal laws and specialized technology have improved educational conditions for many deafblind students. But there still seems to be too much social isolation of the kind experienced by Laura Bridgman and Helen Keller a century ago, too many social barriers between the deafblind students and the sighted, hearing public. Since I spent a bit less than half my life among the ranks of the hearing-sighted majority, I offer a few ideas for how deafblind students might enhance their social and educational interactions.

Even though the students with disabilities are no longer sequestered away, a deafblind student entering a room can still send as powerful an emotional charge as if he’d walked into that very room unclothed! By in large, reactions to deafblind students are not hostile; reactions stem from anxiety. The uneasy person is fearful he’ll say or do the wrong thing, so he plays it safe and avoids the interaction altogether!

I understand this avoidance. During college, I had classes with a competent, intelligent man who was blind and I never spoke to him. He fascinated me, but I was afraid I’d goof and embarrass him and myself. He needed readers, and two of my more self-confident pals volunteered and became good friends with him.

If people do react malevolently to a deafblind person, I think they aren’t just anxious, they’re also frightened. People struggle to be in control. When they see someone who they perceive to be more dependent, they feel unsettled.

I have witnessed this reaction particularly in children. After I’d spoken at an elementary school, the mother of a blind fourth grade girl phoned me in tears. The kids “were being so cruel,” she said. The other children wouldn’t let this blind girl sit with them at lunch.

From the conversation, I learned that this girl didn’t know her way around the building and waited for kids to guide her everywhere. At home, she had no chores and no ability to get herself a sandwich, snack, or glass of water. I remember my kids in fourth grade, pushing at the boundaries to try their wings. Fourth graders strive to be independent. The reality was that this young blind girl’s apparent helplessness made her classmates uncomfortable.

We can calm fears by being as competent as possible, by arranging for a trained professional or trusted friend to orient us to new surroundings. We also might think of favors and help we can give others instead of feeling entitled to benevolence from everyone.

Another way to reduce uneasiness is by sharing information. Whenever I visit schools to speak about writing, I always ask if any kids with sensory loss or physical disability would like to come up and join me at the podium. I say a few words about disability issues, and these students who may have been formerly viewed as outcasts become my helpers. Students who are blind or deafblind demonstrate how to use their canes and their Braille watches. Once one of my little helpers stole the show.

The kids asked her, not me, all the questions, and the principal never needed to pay me to return.

Another strategy is to explain the rules of engagement, so to speak. People usually try their best; they don’t want to offend a person with a disability by offering too much aid. One of my rules of thumb is: “If I need help, I’ll ask.”

No matter how independent we are, we each need assistance sometimes.

So I use my sighted friends the way I use taxi cabs, taking their arm from “a” to “b” until I can travel again from “b” to “c” on my own.

Another tactic is to answer questions, even to anticipate them and address them before being asked. The first thing people want to know is how I became blind. If we explain what caused our disabilities, we alleviate any concern of contagion. Over the years, I have learned that information can break down barriers.

Paying attention to our appearance also helps. During my life as a sighted person, I learned how much people judge us by our looks. I may be more vain than most, but there is a real phenomenon called “lookism,” which is simply discrimination against those who don’t meet a commonly accepted standard of beauty and symmetry. Individuals viewed as overweight or obese are typically the targets of discrimination. But those of us with disabilities also suffer.

Most Americans are captivated by eye contact, which many blind and deafblind people are unable to accomplish. So the average person may speak not to us directly, but to our sighted companions. Whenever possible, I try to face the speaker and respond, and he usually catches on.

Some blind eyes, like mine, aren’t attractive. Since I’m self-conscious about my eyes, I wear sunglasses in the same way I wear make-up and jewelry, to improve my appearance. Other blind people may have normal-looking eyes or worry less about their physical appearance.

Because many deafblind students, like myself, may lack complete sensory input, we might fill the void by developing unusual mannerisms to stimulate a remaining sense (i.e., rocking). I remember seeing “blindisms” and thinking they were strange. Now I have developed my own set of “blindisms” such as playing with my fingernails and chewing gum. I hope these behaviors are less apparent.

Because we don’t see, we may use less facial expression or fewer gestures. I’m reluctant to reach out to strangers because I’ve often missed my intended target and have landed on forbidden territory. However with friends and loved ones, I gesticulate and hug them mercilessly.

The lack of nonverbal communication or gestures that are not understood can give an unconscious suggestion to an unknowledgeable sighted person that we aren’t kindred spirits. But by offering some communication attempts and goodgrooming, we can close the gap between us.

Finally, friends come from common interests. Mine spring from work, church, community groups, the classes I take. By joining clubs or organizations, we interact and get acquainted.

I know deafblind teens that have made friends by becoming members of their high school wrestling or swimming teams. By playing together, their peers overcame their fear, anxiety, and discomfort with appearance. The barriers crumbled away. They emerged from the veneer of their disabilities as distinct individuals, who like the bright students in this monograph, have excelled despite great challenges, all who now enter the world with a better balance of work and relationships for a full life.