John Lee Clark


It is with a wry shake of my head on your arm that I find myself introducing a fancy new word. As a poet I dislike jargon. But sometimes we do need a new word, and it can change the way we see everything. That's what happened to the sighted Deaf community with "audism." Although it was first coined in 1975, by the Deaf scholar Tom L. Humphries, it didn't receive a full discussion until after the hearing-sighted linguist Harlan Lane used it in his 1993 book "The Mask of Benevolence: Disabling the Deaf Community." Sighted Deaf people had always known that hearing society discriminated against them, but the new word suddenly made it much easier to identify and analyze.

As is typical of our community, several DeafBlind folks proposed variations on the Deaf theme. But none of them caught on. More recently, however, "vidism" has gained some traction. It's a helpful concept for two reasons. First, it places a finger on some of the ways the sighted Deaf community has excluded us. Our brother Bryen Yunashko has done important work in this direction. The second reason is that the hearing blind community did not yet have a term to describe sighted privilege and bias, other than the generic "ableism."

Yet addressing both audism and vidism still leaves too much behind glass. I knew there was something bigger there, and I longed for something that would shatter that pane of mystification. Something that would allow me to wrap my hands around its throat and say, "I've found you out, you old serpent!"

The sense of that malaise which affects all of us, DeafBlind and non-DeafBlind alike, had been growing stronger and stronger ever since the Protactile movement started in 2007. It has taught us so much about who we are. About what is natural and true. About how to live. About language. What we once put up with we can no longer tolerate.

What, I wondered, is the opposite of tactile? Researching our community's history, I see that we have always been tactile. But hearing and sighted people have always attempted to keep our tactilehoods in check. We've always been denied access to some of the most basic human rights. What should we call this force of suppression?


A Standing Apart

I propose to call it distantism. The English word "distance" comes from "distantia," Latin for "a standing apart." A point could be made that distantism refers to the privileging of the distance senses of hearing and vision. The ways in which many cultures have evolved on the almost exclusive basis of these two senses have indeed been harmful to us. That insistence on sight or hearing to function in society means only one thing for us: death.

But that would be putting it too simplistically. Each form of social bigotry has its distinctive personality and its unique set of intertwining evils. So I would like to dwell on the concept of distantia, or a standing apart, which lies at the heart of distantism. We already have a Protactile word that describes people who pull away from touch, who refuse to connect. It is an attitude and a behavior. Many hearing and sighted societies prize it highly, and their members seek to maintain physical distance, however thin those margins may be. Their rulers and heroes stand alone--the more remote they are, the more highly esteemed they are. Even when the less privileged are squeezed closer together due to poverty, exploitation, or as punishment, distantism manifests itself in the long lines, tight cells or dubicles, and above all, their being removed out of sight and hearing. For all the hype around its ability to connect the world, technology has often served to isolate people in every other way.

Are sighted and hearing people wrong to use their distance senses and let it affect how they live? No. If they wish to be all eyeballs and flapping ears, they are welcome to such an existence. There's nothing wrong with being organized or efficient. But we have problems when they impose their distantism on us.

Let's read a classic distantist statement:

"The loss of both sight and hearing constitutes one of the severest disabilities known to human beings. Essentially, it deprives an individual of the two primary senses through which we acquire awareness of and information about the world around us, and it drastically limits effective communication and freedom of movement, which are necessary for full and active participation in society."

It used to be impossible to argue with a statement like that, but with a critique of distantism we can begin to break it down. It's an old trick, blaming injustice on its targets so that the privileged can pretend there's nothing wrong. We are at the bottom of society because, what? Because we are DeafBlind. Which cannot be helped. Therefore, we belong at the bottom of society. It's an amazingly easy trick to pull. They take things out of our reach and then they say we have limited awareness. Whatever they do is our fault.

I wish I could share everything this critique has unearthed for me, but it would take years to write! For now, I would like to touch on a few things that I think tell us a great deal about how distantism works.



Despite the many barriers we encounter in society, we can gain much awareness about the world around us. But when we go exploring or when we just exist, sighted and hearing people rush in to intervene. Can they help us? Please don't touch. They will be happy to describe it to us. They will guide us. No, they will get it for us. It's much easier that way. Hello! My name is Katie and I'm your Intervenor!

One of the things I have pondered is why, very early in the history of education of DeafBlind children, they started assigning each one of us a special teacher-companion. This wasn't always the case. There were some classes where we shared a common teacher and we had each other. We can see in the record how distantism set in, and how hearing and sighted people wanted things to look right. It didn't look good when we went around "groping in the dark." It didn't look good for us to cluster together and have too much fun. Education meant we had to sit behind a desk.

The solution was to assign each one of us a sighted companion. Such teachers made it possible for us to sit apart and for the classroom teacher to stand in front of us. They made us hearing and sighted by proxy. Even though we would be in constant contact with our special teachers, the pair of us made for a tidy unit that could and did stand apart. It also made for a most inspiring sight, the self-sacrificing teacher laboring as our only link to the world. It isn't a miracle unless there is a miracle worker.

Today those special companions are called Intervenors or Interveners. The title is altogether too apt. Intervenors who eavesdrop on this article will protest, "But I let Jimmy touch anything he wants to!" No. It's not just a matter of letting or encouraging. There's a whole cultural element involved. There are distantist modes of touch and there are protactile modes of touch. A distantist cannot truly teach or empower our children to live and learn as tactile people. Yet the field of education of DeafBlind children has never included us as teachers. Why is that?


The Road Not Taken

September 30, 1841, might have been the beginning of a wonderful alternative history. On that day, our brother Oliver Caswell, then eleven years old, entered the Perkins Institution, where our famous sister Laura Bridgman had already been a student for four years. He met many people on that day, but he was immediately drawn to her, and the two latched together. Samuel Gridley Howe, the school's hearing-sighted director, was the most insufferable distantist imaginable-a man who, for example, decided that blind people must read raised lines resembling print-but on this occasion he allowed Bridgman to serve as his auxiliary for Caswell's first lesson. Thereafter Bridgman eagerly continued to teach Caswell, devoting many hours each week to the enterprise. Fortune also hugged them when Howe and his new wife departed on a long honeymoon in Europe. It was during his absence that a portrait was painted of Bridgman teaching Caswell to read and write.

In Deaf education, Deaf teachers were involved from Day One. Many graduates were promptly hired as teachers, and Deaf teachers would go on to found schools all over the world. Blind graduates of early schools for the blind were also hired as teachers and continue to play a leading role in that field. But in the education of DeafBlind children, we have not seen the same pattern. There are thousands of Intervenors working today. There are hundreds of teachers proper who work with our children in Deaf, blind, and public schools. There are hundreds of early-intervention specialists. None of these professionals are themselves DeafBlind. What happened to cause so complete a shutout of tactile teachers and leaders?

When Howe returned to his post at Perkins, he found that Bridgman had mingled too much with teachers and fellow students. She had learned too much and had many questions. He considered his neat experiment ruined. He immediately made some radical changes, and, later, for a period of five years Bridgman was in the company of one single teacher. Any suggestions of a future in a widening social circle was abandoned. Perkins would set an example for the world of assigning each one of us a special teacher-companion. They were to help us, keep us safe, protect us from bad influences, and, we can now see, make sure we aspire to the distantist ideal.

It is a common outcome of some forms of oppression that their targets must fit in a narrow space of cooperation and gratitude. The idea with distantism is that we can never uphold it perfectly, but we should make a continuous failed attempt to do so. This continuous failed attempt reassures society that we agree with their values. We are to be good, but never good enough. The field, which Howe firmly sent on its current course, excludes us because it needs to maintain a certain level of failure. If it was its goal to succeed completely in educating us, it would embrace our tactilehood and value us as teachers and leaders. Instead, distantism is the first condition, and for that to make sense, the field needs its work to be difficult and expensive, not easy and effective.


Under Different Names

We adults also receive intervention that serves a similar function. In the United States we have Support Services Providers and in the United Kingdom they are called Communicator Guides. In Canada, they don't bother to pretend it's something different. Their Intervenors serve both children and adults.

I am not saying that we don't need sighted assistants. After all, we do live in a distantist society, and we should avail ourselves of distance-information readers. However, the way our SSP services are performed can be smothering. That's why a key concern of the Protactile movement is autonomy. When I teach Protactile, I like to make it easier to remember what it means and how to spell it by breaking it down into three parts:

AUTO: They do a lot of things automatically, taking over, making decisions for us, making assumptions.

NO: We need to say "No!" to such automatic actions.

MY: We need to say "My!"-we will do things our way and make our own decisions.

Sometimes I get a new SSP and she asks for my shopping list. She is ready to take charge and have me merely tag along, holding on to the cart. She's confused when I do not give her a list and I take charge, directing us toward the places where we will find what I want. She is now more like a detector, or a device that I take out of my back pocket to consult. Only she is far more intelligent than any machine could be and there's a wonderful rapport-that is, if she is able to unlearn her distantism. It is my responsibility to learn and know the world around me; it is part of her job to help me update that knowledge as we go along. But it is not her job to retain any of this knowledge herself.

Having a SSP is still useful, but it makes such an enormous difference how it's done and when. Sadly, most SSP, CG, and Intervenor programs leave the professionals' distantism intact. As a result, they often take charge, make assumptions, push our canes away from making contact, pull us back from people, put themselves in the middle of interactions instead of support our direct communication with others, and guide us in such a way as to maintain a margin between us and the world around us. No wonder we have limited awareness!

Their distantism finds its ugliest though unconscious expression at many of our gatherings, conferences, and retreats. You know the routine: We are each assigned a SSP. Instead of helping us connect with each other, they end up being the ones with whom we talk the most.

Their presence creates a network of distantism that separates us from each other or makes it harder for us to find each other. They also can destroy moments when we cluster and go tactile. A friend shared with me an experience he had with a yoga activity at a retreat. The yoga instructor was a sister, and she wanted the group to do it in Protactile style. So there was a happy clustering, and people helped each other and passed on information. But it didn't look right, and one of the SSPs standing back intervened by going to her "client" to correct his position. "That's not what the position is, it is this." Soon the other SSPs slipped into the group. In a few moments there was a nice straight row, everyone paired off and standing apart.


The White Cane

Even when we shake off those pesky intervenors, distantism follows us still in the form of the white cane. Now, I love my cane, but it was also one of the first things that told me there is something wrong. As I pointed out in my essay on protactile design, "My Dream House," it is not our home if we need a cane. What this means for our present discussion is that the instant we feel the need for a cane, we are in distantist territory. One of our long-term goals should be to claim more and more territory where we do not need a cane at all, because the design of these environments is tactilely accessible and appropriate.

For going out in the public, I think we still need to ask the question: Why were we given the white cane? The three words Orientation and Mobility specialists repeat like a mantra are "independence," "freedom," and "safety." Our brother Robert Sirvage has observed that in Amerikcan Sign Language all three are said the same way. Our crossed wrists turn away from each other and move apart, as if breaking out of handcuffs. That's freedom, and also independence and safety. I now realize that this is the ultimate distantist fantasy.

The white cane makes it possible for us to go many places over a wide variety of terrain all the while avoiding contact with our environment except through our cane. It is a magic wand that conjures up a bubble for us to float in. Sighted Orientation and Mobility instructors have always taught us one-on-one, the better to dance circles around us and make sure the bubble grows stronger. They like to scout out a location first, find a path through it, and then bring us there, saying, "Go straight until you feel a curb, then take a 45-degree turn and walk until you encounter a railing." A code of aimed turns and sailing until we hit something then another turn.

The field has yet to accept any DeafBlind instructors, adamant in the belief that we cannot teach each other to travel. They are right-we cannot possibly teach each other how to travel in their sterile, desolate, meaningless mode where the goal is for us to go down the middle, in a straight line. They want us to disturb the world as little as possible. Ironically, sighted people make that easy to accomplish by parting like the Red Sea before our rod. Joke: How am I supposed to find anyone if everyone runs away from me?

The bubbles they put us in are sometimes so thick they are more like tanks. I cannot count the times I would approach a brother and sister and get the feeling I'd just interrupted their process of steaming forward. Often they'd be holding something in their other hand, and I must wait for them to disassemble their tank-bubble before we can interact. That's why I have worked on making my bubble as thin as possible, ready to pop the instant there's an opportunity for connection. For me, this has meant finding the right cane: a slender beauty made of fiberglass. It's so light that I can hold it like a pencil if I wanted to, with just two fingers. It's no tank. It's a mere whisker, sometimes feeling ahead, sometimes tucked in favor of other modes of experience.

One of these other modes is traveling and exploring together. I agree with Sirvage's suggestion that we need community-based approaches. This would go against the whole thrust of the rehabilitation system, which is a monument to distantism. It's built on one-on-one instruction, which effectively isolates us and tells us that we are broken and need to be fixed.


Final Irony

Before I bring up one more thing about distantism, let's read that quote again:

"The loss of both sight and hearing constitutes one of the severest disabilities known to human beings. Essentially, it deprives an individual of the two primary senses through which we acquire awareness of and information about the world around us, and it drastically limits effective communication and freedom of movement, which are necessary for full and active participation in society."

The final irony is that a DeafBlind man, the late Robert J. Smithdas, wrote these words. Many hearing and sighted people have expressed the same sentiments, but distantism is so pervasive that we all have internalized it. Helen Keller spoke of us as being imprisoned in the "double dungeon of darkness and silence" and that we are "the loneliest people on Earth." She was being fanciful, but what is true is that the marginalization we experience is too often literal, involving physical margins.

That we find distantism even in ourselves is good news, for it proves that it is a serious, society-wide sickness. When our sisters, the magnificent Jelica Nuccio and aj granda, launched the Protactile movement, we knew it was a historic event. Now that we know more about distantism and how poisonous it is, their achievement seems all the more astonishing.

Think about it. Billions of people on this planet, and all of them agreeing that hearing and vision are required for leading full, normal lives. Billions of people of one mind that being DeafBlind must be an unendurable fate. Billions of dollars poured into the hope of medical cures. Distantism, that old serpent, held the whole world in its remote-control spell.

And then our sisters from Seattle had the audacity to say that there's a DeafBlind way. To say that hearing and vision are not necessary. To say that the only cure we need is each other. Can you feel the world shaking as it starts to, finally, come together?


*"Distantism" Originally appeared in John Lee Clark’s blog "Notes from a DeafBlind Writer".


John Lee Clark is the author, most recently, of Where I Stand (Handtype Press). His essays and poems have appeared in diverse publications including The Chronicle of Higher Education, McSweeney’s, Poetry, The Seneca Review, Sign Language Studies, and the Minneapolis Star Tribune. He lives I Hopkins, Minnesota with the artist and author Adrean Clark and their three sons.