John Lee Clark on Why Capitalization Matters to the DeafBlind Community

It is six degrees below zero here in Hopkins, Minnesota. Ten inches of snow are on the ground. My cheeks are burning. This morning’s Christian Science Monitor delivered a slap in our faces. For months, my colleagues in the Protactile movement and I had corresponded with one of their journalists, and we had invited him to join us for a week of curriculum development meetings in Oregon, where he did some filming and interviews. And now the video story about our rapidly evolving language has gone live.

The text of the story, as well as the transcript of the video, referred to us as “deaf-­­­blind.” That set off a firestorm. We had always identified ourselves as DeafBlind, and at no point during our engagement with the journalist did we ever say or write “deaf-­­­blind.” The journalist explained to me that the staff editors had changed “DeafBlind” because the style guide from the National Center on Disability and Journalism recommends “deaf-­­­blind.”

In the ensuing back-­­­and-­­­forth with the editors, I found myself slipping into the familiar position of explaining our name. The editors tried to make it an issue of nomenclature. They also asked for documentation. I kept shifting the issue back to that of respect. They had disregarded how we identify ourselves. All they needed to do was extend the courtesy of following how we prefer to be called.

Because we shouldn’t have to defend our position or supply documentation, I hesitate to write this essay. The issue should always be that of common courtesy. But since we inevitably end up doing some explaining, it may be helpful to provide an account of how we came to insist on being identified as DeafBlind. It would certainly save time when something like this happens again, although our goal should always be to obtain unconditional respect.

All right. In the nineteenth century, we had a pungent potpourri of labels sprinkled over our heads, including Blind Deaf-­Mute and Deaf, Dumb, and Blind! Yes, exclamation points often attended. Notice how there are three things mentioned. This reflected the Victorian understanding of muteness—­­­by which they meant not speaking orally—­­­as a distinct disability. Many of us were considered as suffering under not two but three afflictions. Thomas Arnold, a British educator, termed it “a fearful trio of calamities.”

Then dumbness began to lose its status as a cornerstone disability. Alexander Graham Bell and other oralists insisted that Deaf people could be and should be taught to speak orally and to read lips. As part of their propaganda machine, they campaigned for the removal of “Dumb” and “Mute” from the names of schools, organizations, and publications. The reality of deafness they could not deny, but dumbness was a figment, a phantom, a demon to be exorcised by steampunk Science. They imagined a very near future where all Deaf people spoke English perfectly, could read lips a mile away, and would marry only healthy hearing people so as to milk the “deaf variety of the human race” out of existence. Bell did accept, however, that DeafBlind people could not be expected to get on with the program, while sighted Deaf people had no excuse.

Some Deaf people resisted by emphasizing that they were indeed mute. They began to use the word “silent” as a subversive concept. The National Association of the Deaf, for example, named its official organ The Silent Worker. Others who did speak orally as well as American Sign Language, rather than going with “deaf,” labeled themselves “semi-­­­mute.”

But by the early decades of the twentieth century, this particular aspect of oralist ideology was so pervasive that even the National Association of the Deaf voted to condemn “mute” and “dumb” terminology. From that point on, it was just “deaf.” One effect of that development was that we no longer carried a combination of three possible labels. It was down to two. It was either blind-­­­deaf or deaf-­­­blind. William Wade, a steel industrialist from Pittsburgh who first became interested in us after meeting nine-­­­year-­­­old Helen Keller and giving her two dogs, published a monograph in 1901 called The Deaf-­­­Blind and followed it up in 1904 with The Blind-­­­Deaf. He traveled across the United States and Canada to meet over a hundred DeafBlind people, gifting Hall Braillewriters, customized items, and stipends and inviting many to vacation at his estate in Oakmont, Pennsylvania. In the summer of 1901, he underwrote a historic gathering of DeafBlind students and adults in Buffalo, to take part in the meeting of the Convention of American Instructors of the Deaf and to enjoy the Pan-­­­American Exposition.

Of the two terms, “deaf-­­­blind” became the standard and remained thus for most of the twentieth century. During the 1960s, however, strange things started to happen to the definition of “deaf-­­­blind.” The rubella epidemic saw an explosion in the number of “multiply handicapped” babies being born, including DeafBlind children with or without other disabilities. In the 1970s, there were mandates and much money for “mainstreaming” those children in public schools. Hearing and sighted educators stuffed as many children as possible under the “deaf-­­­blind” classification.

Historically, unlike for Deaf communities and blind communities in education, we have never been enlisted to serve as teachers of DeafBlind children. As the ranks of hearing and sighted teachers swelled in response to the rubella epidemic and a growing list of etiologies, the practice of excluding our community continued. The lack of our involvement allowed them to apply the label “deaf-­­­blind” to a vast number of children with multiple other disabilities, while always insisting that “deafblindness” be considered the primary disability. In fact, the stuffing strategy gave them yet another excuse for our exclusion. “Keep in mind,” I was repeatedly told by educators when I pushed for the hiring of DeafBlind teachers, “that most of the students are severely and profoundly disabled and not like you.” Never mind that any child would benefit from having a DeafBlind teacher.

Then a tiny tweak took place in Europe. Hearing and sighted professionals, especially those who worked for charities, felt that “deaf-­­­blind” no longer reflected those children’s plight. They began eliminating the hyphen to make it a single word. As Salvatore Lagati of Italy’s Servizio di Consulenza Pedagogica explained in a 1993 paper, “deafblindness is a condition presenting other difficulties than those caused by deafness and blindness.” Rather than it being deafness and blindness added together, their logic went, it was deafness and blindness multiplied. Dropping the hyphen proved useful in their fund-­­­raising efforts, giving them infinite occasion to explain how “deafblindness” is much more—­read: worse—­than the sum of the two parts.

As charities the world over scrambled to remove the hyphen, it became clear that similar groups in the United States were declining the upgrade. One reason was that our DeafBlind organizations rejected the uniqueness rhetoric. Although we were never directly involved in the education of DeafBlind children, our organizations at least had a say in nomenclature debates. We preferred to think of our lot as being simply deaf and blind, nothing worse. The shrug was in keeping with our traditional stance as a community of identity rather than that of culture.

But even that stance was shifting. Starting in the 1960s, we gathered in person with increasing frequency. In 1973, inspired by those social opportunities, a Black DeafBlind woman from Cleveland named Doris Callahan ran for president of the National Association of the Deaf-­­­Blind—­today the American Association of the DeafBlind—­on a plan to host annual national conventions. After her election, this idea was put into motion, and the first convention took place in Cleveland in 1975. Other major gatherings followed, including retreats, camps, expos, and cruises.

Attendees of the seventh annual AADB convention in August 1982 raved about their time on the University of Northern Colorado campus. It was the first time, according to longtime AADB president Roderick Macdonald’s history of the organization, that “all participants were housed in the same building, which was also the location for all meetings and all meals, making it possible for many deaf-­­­blind people to come and go from their rooms, their meals and their meetings without assistance.” By 1989, Roderick would present on the possibility of a DeafBlind culture. His paper “Deaf-­­­blindness: An Emerging Culture?” was delivered during the Deaf Way international conference, and he speculated that if deaf-­­­blind people were allowed more opportunities to interact with each other on a continuous basis, they would gradually develop a tactile, manual language ideally suited to their needs—­that is, to the sense of touch. While this tactile language would have its roots in spoken and signed languages, it would gradually develop the unique grammar and syntax typical of independent languages.

Twenty years later, his augury was more than fulfilled with the emergence of Protactile, our first independent language. At the time he presented his arguments, though, it was easy to mistake them as an extrapolation of Deaf cultural discourse. Indeed, our community included those who grew up in the Deaf sighted world. They had made a great invasion of our community during the 1970s, when many of them learned that they had Usher syndrome and were becoming progressively blind. My father was one of them, but thankfully he ignored the warnings not to have children and pass down the genetic calamity. As his generation of people with Usher syndrome came into our community, they caused some confusion. For example, “Bill,” after losing his job and his status in a Deaf community when he became increasingly blind, would start attending our events. He would say that “Tom” wasn’t “culturally deaf-­­­blind” because he didn’t speak ASL. Rather, Bill would embrace “Mary” as a fellow “culturally deaf-­­­blind” person because she graduated from a Deaf school and spoke ASL fluently. Here Bill obviously had much yet to learn, because Tom used a cane, read Braille, and communicated tactilely, whereas Mary was still in denial, refusing to use a cane or learn Braille. It would take time before Bill would appreciate that if anyone were to be considered culturally deaf-­­­blind, it would be Tom and not Mary.

Not all Deaf cultural values had to be shorn away. One value that did help to rewrite our community DNA was the expectation that we have a common and natural language of our own and, through that language, build our own physical spaces. At first, many newcomers from the Deaf community tried to make ASL and visual spaces be those things for our community. That never worked, but the desire to be able to communicate through a native language did lead to Protactile. Ironically, many of the same people who brought in this desire were the most resistant to Protactile, because for them ASL still represented that desire.

When sighted Deaf communities started to capitalize “deaf” to denote a cultural identity, some people in our community immediately wanted to capitalize “deaf-­­­blind.” In this they were being too Deaf-­­­minded. The idea of capitalization needed to be more finely filtered through our collective thought. In 1993, a town hall meeting was held in the basement of a church in Minneapolis. My father, who was then serving on the board of our local organization, had convened it to consider the question of nomenclature. I was fourteen years old. I can still feel the excitement in the room as everyone spoke their mind. What resulted was not only the capitalization of the “deaf” part—­which would have been copying Textbook Deaf Culture—­but also the capitalization of the “blind” part. Members with no background in the Deaf world supported capitalization and were emphatic that both parts be capitalized.

That was not all. The assembled body also decided to do away with the hyphen. The peculiar spelling was adopted, and our organization’s name changed to Minnesota DeafBlind Association, thus sparking a trend that continues to this writing. Today “DeafBlind” is one of the only things that enjoys widespread consensus among diverse demographics and factions within our community. Mortal enemies over other matters, including the controversial Protactile movement, are in agreement that DeafBlind is our name.

Some people have and will continue to misread it. By capitalizing it, are we establishing that ours is a cultural identity? Yes, but not because we have a textbook version of it. By removing the hyphen, are we stressing that it’s not deaf plus blind but something more? Yes, but not because “more” means “worse.”

Our compound, doubly capitalized name, coined before the Internet popularized such spellings, is admittedly an awkward one. At nine letters long it is unwieldly, and we often go with “DB” for short. We’ve had to fight for its recognition and our own definition of it. Maybe it’s even meant to be slightly off-­putting, like it’s saying, “It may be weird, but it’s us. Deal with it.” As such, it serves as a good test because we have so much more than just our name that demands respect and support.

It is now a sunny morning six days later. The snow has melted some. My cheeks are bristly-­­­soft with a beard I’ve let grow since last Thursday. In my inbox is a message from Mark Sappenfield, editor of the Christian Science Monitor. “After a discussion among the staff,” it says, “we have decided to change our style to DeafBlind as a default, but also to ask those interviewed how they would like to be identified and to respect those wishes.” There’s more, of course. What we expose affects everyone else. Sappenfield continues, “It is . . . abundantly clear that the old model of journalists being the gatekeepers . . . is all but past; we are now partners with the communities we cover. What I learned in this experience is that it goes not only for our content, but for how we let our readers talk through our pages. We need to be more flexible and fluid to honor their voices.”

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Excerpted from Touch the Future: A Manifesto in Essays by John Lee Clark. Copyright © 2023 by John Lee Clark. Used with permission of the publisher, W. W. Norton & Company, Inc. All rights reserved.