Protactile Research Network
Chapter 2: Creating DeafBlind Identity
The inception of the Seattle DeafBlind community can be traced back to 1972 when the Seattle Lighthouse for the Blind created a DeafBlind employment program. In the decade that followed, word got out about the program in the national vocational rehabilitation system, otherwise known as “VR.” VR counselors started placing DeafBlind clients in positions at the Lighthouse and the number of DeafBlind employees grew steadily. According to records compiled by former administrators at the Lighthouse and other relevant local organizations, between the years of 1980 and 1983 more than 20 DeafBlind people had moved to Seattle, and between the years of 1984 and 1987, 48 more had arrived—nearly all of them taking positions at the Lighthouse. In this and the following chapter, I argue that the primary motivation for these relocations was just having a place to be. Employment at the Lighthouse was merely a means to that end. Nevertheless, the history of the Lighthouse, its structure, and the roles it made available were critical in generating certain ways of being DeafBlind and not others.
The Seattle Lighthouse, like other organizations of its kind, combined manufacturing jobs with social services provided to the employees who were hired into those jobs (Rochester 2004). These organizations started out as “sheltered workshops for the blind,” which were originally established by schools for the blind to guarantee employment for their students upon grad- uation. According to historian Frances Koestler (1976), sheltered workshops have played an important and contentious role in the lives of hearing blind Americans since the nineteenth century and are at the center of political discourses that have intensified since the beginning of the twentieth century. The workshops are supposed to protect blind workers from the ideological and economic fluctuations that make their employability unpredictable. For example, after World War II, blind Americans who were employable during the war were, like many other groups, suddenly and inexplicably unemployable after the war.
The stated purpose of the sheltered workshop is reliable employment for groups that are vulnerable in unstable markets. But the type of employment provided by the workshops is unusual in that workers get “dignity” and “self- esteem” instead of money in exchange for their labor (Koestler 1976: 195). The slogan, “Giving people the chance to hate Monday mornings,” which can be spotted on the side of Goodwill Industries delivery trucks and elsewhere in their marketing materials, is directly related to the model of a sheltered workshop: In exchange for work, we will provide the dignity that comes with being part of the weekly rhythms of society. Monetary compensation is sec- ondary. Those in a position to benefit from that arrangement call it “charity,” but hearing blind Americans overwhelmingly see it as exploitation, and they have railed against it. More generally, they object to what sociologist Robert Scott (1969: 80–84) calls an “accommodative” approach, which focuses on creating special environments for the blind worker, instead of giving them the skills they need to find work in the mainstream. In political discourse, blind Americans claim that accommodation is actually a strategy for maintaining a large dependent pool of workers who can be exploited indefinitely, and they have advocated, instead, for an “integrative” approach.
Given these dynamics, by the early 1970s, the Seattle Lighthouse and other organizations that grew out of sheltered workshops were running low on “charity recipients.” That was a significant problem for them because by then they were into multi-million dollar contracts with Boeing and the U.S. military and their workforce was opting out. According to Koestler (1976: 226), the solution was to recruit people who were blind and had other disabilities as well, since they were less of a flight risk. DeafBlind people were part of that trend and it is clear that the roles they were stepping into were problematic. However, in general, they did not respond the way hearing blind people had. They had been socialized in residential schools for the Deaf, Deaf clubs, Deaf churches, and other Deaf organizations, where “accommodation” and “integration” were reversed in terms of their political valence.
Precisely counter to blind politics, Deaf political discourse has focused on the detrimental effects of de-institutionalization, integration, and main- streaming, since those moves often mean isolating Deaf children in spoken- language environments (e.g. Keating and Mirus 2003; Van Cleve 2007; Cheng et al. 2019). Most of the people who moved to Seattle to take jobs at the Lighthouse did so as adults who had already suffered the effects of so-called integration and had no interest in reproducing that experience. What they wanted, by the time they got to Seattle, was a place where they could be DeafBlind. Fair compensation and opportunities for advancement were not their main concern.
For example, Adrijana ended up in Seattle in her 30s after spending much of her deaf (partially) sighted childhood in hearing environments alone. After a short period of time in a Deaf school, she was transferred to an “oral” program where spoken language was the only permitted means of communication, and from there she went on to a hearing high school without interpreters. When she described the isolation and loneliness of that experience, her eyes filled with tears. She said: “When I graduated from high school, I found out that my peers had made up a name for me. Apparently, no one knew my name and they didn’t bother to ask. When I walked across the stage at graduation, they announced their made-up name instead of my real name.” She shook her head, and said, “I spent four years with those people, and they never even knew my name.”
Growing up, Adrijana had been punished, sometimes physically, for trying to communicate with gestures or signs. Years of her education had been wasted doing little other than slowly pronouncing individual English words. It wasn’t until she went to a Deaf college that she had the opportunity to be a part of a social world. The ASL she learned as a child came back slowly and after some time, she found herself immersed in a vibrant social setting. She met the man she would marry, found a field she wanted to pursue, and felt that finally her life was on track. Not long after, though, her vision deteriorated and Deaf environments started to feel as unwelcoming as the hearing environments she had grown up in. By the late 1980s, she was having difficulty with her job and her relationships. She could tell that the life she had was not going to be feasible for much longer, but she also knew about Seattle, and she was optimistic that if she went there it would be like college had been before—a place where communication and interaction would, once again, feel natural. With this in mind, she found a job in Seattle and relocated. For Adrijana and many others, the particulars of the job weren’t that important. She needed a place where she could be DeafBlind, and to her, that was inextricably tied to communication.
Others described communication access as a main reason for moving to
Seattle as well. For example, Rebecca moved to Seattle from Nevada in 1985. She had grown up around sighted Deaf people, but she said that as she lost her vision, she became isolated:
"For a long time, I lived with my mom. I didn’t work, because it was really hard to find a job. I had to rely on SSI [Supplemental Security Income] and stay with my mom, and my two sisters."
“Everyone would go to work,” she said, “and I would stay at home alone and watch TV.” When I asked her if she ever went out with friends or spent time with people outside of her family she said, “Unfortunately, many people my age kept disappearing. I had one good friend who was a teacher.” About her decision to move to Seattle, she said that the job at the Lighthouse was not what she had envisioned for herself, but:
"the DeafBlind community [in Seattle] was growing at that time, which was great, and DBSC was just being established. At DBSC, I learned about SSPs [“Support Service Providers”] who could help me with reading my mail, going to the store, etc. The DeafBlind community here was fantastic. It was so much better than Nevada. There was a DeafBlind community in Nevada, but it disappeared. So I decided to try and settle here in Seattle, and work for the Lighthouse. I realized there was a better life for me here."
Rebecca’s reasons for moving to Seattle were related to having a place to be, populated by things and people, which gave her something (anything!) to do. It wasn’t as if she was going from one life to another. Life itself was eroding (the people and the community were “disappearing”) and against that back- drop, Seattle appeared as a life raft. The job itself was a concession. In recalling her work history at the Lighthouse, she told me that one of her first placements was in a department that manufactured fire fighting equipment. She said:
"They sewed sleeping bags for firemen, but it wasn’t something I was good at. I tried, but it was frustrating. They noticed that I wasn’t very fast at it, so I started assembling mops, and then also canteens. I went back and forth between several departments. But after a while, the department making the sleeping bags closed down because they weren’t making enough money on it. So I started doing work on the Boeing contract—mostly filing. But I used to get really sleepy doing that job. It was incredibly boring."
Still, Rebecca was glad she had the job because she could live in Seattle, where special services made it possible to carry out tasks like grocery shopping and attending community meetings and events. At home in Nevada, she would be sitting at home alone instead. Her main concern was being in an environment that enabled communication and interaction. Fair compensation, intellectual stimulation, and other factors were less important. With communication access came intelligibility, as well. Rebecca and many others who moved to Seattle from elsewhere said that the mode of access they chose made them legible as a particular kind of DeafBlind person. People who communicated by touching the hands of the ASL signer were “tactile people.”
People who chose instead to stand far away from the ASL signer, were “tunnel- vision people.” No one in Seattle thought that you were backing up because you were aloof, or you were touching them because you were interested in them romantically.
However, intelligibility was made possible by the fact that DeafBlind people were communicating in idiosyncratic ways, across different modalities, and that caused problems of its own. The Lighthouse staff recognized this early on as the DeafBlind employment program started to grow. Communication between employees was so strained, in fact, that physical fights were not uncommon. I interviewed Joey, who was one of the people called in to address the problem. He was Deaf and his official title was “Communication Specialist.” He explained that at that time, the DeafBlind employees “had really mixed backgrounds. Some of them had limited exposure to language in general because they had not had access to a perceptible language in the years when first language acquisition usually occurs, or they used a different sign system, such as ‘Signed Exact English,’ which is an invented system that attempts to represent English, manually. It was just like deaf people who were not blind,” he said:
"Many came from hearing families, so they had really weak foundations in their language development. When DeafBlind people communicated directly with one another there were all kinds of misunderstandings that would lead to accusations and fighting. So as a communication specialist, I would have to intervene and explain, “that person can’t see you. They have to use tactile reception, so you have to sign tactually to them.” Or maybe one person doesn’t really know English and the other one is throwing big [fingerspelled] English words at them and they start calling each other names."
The individuals who were all lumped together at the Lighthouse would have been part of very different networks in larger Deaf communities and even if they were sighted Deaf people they might have had some trouble communicating. These problems were never sorted out because sighted inter- vention became so ubiquitous that DeafBlind people rarely had to commu- nicate directly with one another at all. Instead, they communicated through sighted interpreters. This was possible, in part, because Seattle Central Com- munity College started producing sighted interpreters trained specifically to work with DeafBlind people, and the number of qualified interpreters grew rapidly.
2.1 Building a Bridge
Seattle Central Community College established a program for Deaf students in the 1960s and an interpreter training program in the 1970s. According to Laura, a Deaf student who was there in the late 1970s, there were about 100 Deaf students enrolled at the time. Some took two years of general require- ments and then transferred to a four-year university, such as Gallaudet. Some learned technical skills like boat-building or mechanics. The Deaf program and the interpreter training program were housed in the same building so there was a lot of interaction between hearing and Deaf students. Laura said:
"It became really common for people to get together in the cafeteria, and no one cared if you were Deaf or hearing, as long as you were signing. It was a really thriving social scene. That’s what it was like back then."
Early on, when DeafBlind people moved to Seattle to work at the Lighthouse, they were part of a very small group. Given the diversity in linguistic, cultural, and educational background, it was likely that they would either not be able to communicate with other DeafBlind people or that they would have nothing at all in common with them and would not feel compelled to communicate with them. Seattle Central Community College was an important resource for broadening the pool from which potential interlocutors, friends, and communication supports could be found, and they were also seen as a bridge to the “hearing world.” Early on, ties between the Lighthouse and Seattle Central were informal, but over time, the relationship was embedded in institutional structures. First, a small number of specialists with ASL-related expertise who were affiliated with Seattle Central in some capacity, were hired at the Lighthouse in permanent positions. In 2010, I interviewed Dawn, who was one of those specialists. She explained that the institutional culture of the Lighthouse at the time was very different from what they, as interpreters (who were almost exclusively women), were used to and they did not encounter a warm welcome upon arrival. In Dawn’s words:
"We were relegated to a corner and given one tiny desk to share between four people. “four pairs of knees all trying to share the same knee-hole” [laughs]. Then Mary brought in a tiny sewing desk for me, and I thought, “That’s fine, I don’t need much. I’m going to be out doing stuff anyway.” We were told to stay out of the front area [where serious business was taking place]." However, according to Dawn, their team was young and energetic, and almost immediately they started to win over the “stuffy manufacturing executives”:
"You know, you run into the president’s office, and say, “I need your car keys”, and he says, “My car keys?” and you say, “Yeah.” And he asks you why, while throwing them your way, and you say you’ll tell him later. We were this flash of life in an otherwise dimly lit room."
Dawn suggested that within the walls of the Lighthouse, the 1950s were alive and well—“drinking lunches” and all. She and the others who came in with the DeafBlind program brought the ’80s with them:
"It was like that. But you know, they were trying to find common ground. We [the staff of the DeafBlind program] have always stuck out like sore thumbs. It’s like Mary Poppins descending into stuffy George’s house. This is really a very conservative manufacturing company, and we have always been something else."
In these early years, there was a sense more generally that the Seattle Deaf- Blind community was adjacent to local institutions—drawing resources, but not being defined or subsumed by their structure. At the Lighthouse, adjacency had to do with the fact that organizations of its kind traditionally employed or served hearing blind people. Communication specialists and interpreters who came to work at the Lighthouse in the 1980s had been educated in programs that focused on the history, culture, and language of Deaf people and the analytic skills needed to mediate between their minority perspective and that of the larger and more dominant hearing society. When they came to the Lighthouse, they had to learn how to extend their knowledge and expertise to include things that would be relevant for Deaf people who were also blind or becoming blind. Some things required improvisation, while others fit fairly neatly into the structures, categories, and practices that were already in place in this new institutional environment. For example, one of the sighted specialists was hired to teach “independent living skills,” a recognizable category in institutions that serve blind people. These classes included instruction on how to cook without vision, how to read Braille, how to label one’s clothes with Braille labels to keep track of the colors, and so on. The Department of Services for the Blind (DSB) provided these services, but only in spoken English, since nearly all of their clients were hearing.
When the numbers of DeafBlind people started growing in Seattle, it became cheaper and more effective to train people who already knew ASL to provide the training directly rather than hiring interpreters. At DSB, these techniques or strategies were taught, for the most part, by sighted experts to adults who had become blind. Given this distribution of expertise, tactile reception of ASL fit in easily as an additional “strategy,” or “tool.” Just as Braille was a tool that helped people access written English, tactile reception of language was treated as a tool that could help people access ASL. Fitting DeafBlind reality into the categories and authority structure of the Lighthouse, then, was one factor that contributed to the maintenance of visual modes of communication and prevented DeafBlind people from building intuitions about tactile environments.
Meanwhile, interpreting and translation, framed explicitly as bridge-building, actually reinforced these anti-tactile tendencies. Interpreters are trained to mediate between languages—in this case ASL and English—at the level of pragmatic inference. The goal is to capture not what the speaker says, but what they mean to convey in a way that will be interpreted as grammatical and culturally appropriate to the addressee. If this is the starting place and the addressee is blind, the most reasonable thing to do is “add in” the information needed to draw the relevant inferences. For DeafBlind people, this meant that more and more of the environment was described, and less and less was lived in. At the time, moving in this direction was viewed as a reprieve from encroaching blindness. It was not a bridge between tactile and visual worlds, but a bridge leading back to the world they once knew. If a person had stopped going to church, or attending dinner parties, for example, they could now return to those activities, with an interpreter. If they had stopped attending group meetings at work, they could now do so with an interpreter. If they had stopped going out past dark, they could now do so with an interpreter. The world, as it was already known, could be preserved or prolonged.
In the absence of a tactile world and tactile language, interpreters were
also necessary for political organization. With their involvement, the Seattle DeafBlind community achieved political recognition from state government, which led, in turn, to the creation of the DBSC—an institution that would play a crucial role in the community’s future.
2.2 “We Need Interpreters”
When I asked people about the origins of DBSC, the response often began, “Do you know Dan Mansfield?” And then the following sequence of events was recounted: It was the late 1980s. Every year, there was a new influx of DeafBlind people, and as the community grew, flaws in the local infrastructure became more obvious. Resources were taxed and something had to be done. To convince decision-makers of this need, the community turned to Dan Mansfield—a DeafBlind man, known for his good looks and his charm. His aim would be to convince representatives of the Washington State government that there was a real and pressing need for interpreters, and that those interpreters had to be provided by a new and independent DeafBlind organization.
I pieced together this part of the community’s history digging through big boxes of old documents and newspapers. Some of it came from the Lighthouse archives and a lot of it came from ethnographic interviews. On the points I have just outlined, there was significant convergence across interviewees, but the following story was almost exactly the same every time:
"Looking fantastic, Dan walked confidently toward the committee. They were seated at a long table on a raised platform at the front of the room. Dan told the interpreter, who had accompanied him, not to speak, and then took his place before the committee. He pulled a stack of index cards out of his pocket. Each card had a printed letter on it. He began to spell his message one letter at a time: “I. A. M. ” And then he slipped and all of the cards fell on the floor. People jumped up and tried to help him collect the cards, and it was awkward and uncomfortable for everyone. Finally, he stood up and started again with the cards. This time, though, they were out of order and his message was indecipherable. There was no way to interrupt him because the interpreter had been instructed not to participate, so he went on like that, slowly spelling unintelligible words. Then he told the interpreter to start interpreting for him again. All he said to the committee was, “We need interpreters.” And DBSC has been funded ever since."
As I inquired further about the history of DBSC, I learned, of course, that there were broader efforts, undertaken by many, to achieve political recognition and to secure funds for services.
One such effort was led by administrators at the Lighthouse. Working with DeafBlind members of the community, they created a “needs assessment” and shared it with the directors of all of the relevant state agencies. Leah, one of the Lighthouse administrators in charge of the project, explained in an interview:
"One of the key things we did was put together a matrix. It was done by hand because it was before computers. It was a grid sheet. We had services and organizations, one on each axis, and we put an X where there were services, and no X where there were no services. That became a tool for us to make our case."
During a 12-month period of dissertation fieldwork, I found the original matrix in a box of pictures and old newsletters at the Lighthouse. It was hand-drawn and the ink had faded. Following up on the stories I had heard about it, I interviewed Al, who was the director of DSB at the time. He told me:
"By the time I saw the needs assessment, [Seattle] was a place of choice for Deaf- Blind people. Large numbers, proportionately, so it created a real challenge for metro, [VR, DSB, and other state agencies]. We had a real problem."
The solution, he explained, was to create DBSC—a separate non-profit organization that would provide the services other agencies couldn’t. One of the key things DBSC needed to do was secure funds for specialized interpreters who could act as guides, relay environmental information, and provide transportation outside of work hours. A more permanent, institutional structure would, as Al said, ensure that DBSC “was not subject to the whims of whoever happened to be directing the three agencies.”
According to Leah, everyone thought it was a great idea, but no one was jumping out of their seat to pay for it. So the aim at this point was to convince the governor’s office to establish a bill that would secure funds for DBSC. In order to achieve their goal, political representatives had to become aware of the need for specialized interpreters. Groups of DeafBlind people and sighted advocates and interpreters started making regular trips to talk to individual senators and representatives at the capitol with the goal of demonstrating, in person, the important role interpreters played. One sighted interpreter had a Volkswagen bus that everyone would pile into and go down to the Capitol for the day. They planned their appearances strategically, showing up, for example, during the lunch hour on days when important meetings were happening. There were sleepovers the night before, where people would practice their speeches repeatedly, until they were concise and flawless. Real relationships were growing and sighted interpreters, according to both DeafBlind and sighted people, were abundant and able to volunteer their time.
In addition to demonstrating the need for interpreters, activists also wanted the legislature to force the relevant state agencies to put a proviso in the budget to secure funds for interpreters, regardless of who happened to be the director of the obligated agency. During this time, DeafBlind people were a persistent presence on the Capitol campus. For example, Al told me about a particularly
memorable moment when he felt political recognition had been achieved:
"Jim McDermot was chairman of the Ways and Means committee. It was really hard to get a meeting with him, and I remember the DeafBlind folks were down that day.We had come to his building—his office was in a suite. There was a waiting room and a conference room. And he had an office in the back in the ground floor of this building. Dan Mansfield and four or five people were standing in the hallway outside of his door. He was leaving his office, about to go out to the capitol. He was so hard to meet with, that typically people would ambush him--Senator can I walk with you. Every once in a while, he would see someone he wanted to talk to, and he would walk with them, but most of the time, [he would bolt]. So he stepped out and he glanced down the hall, and he saw several DeafBlind people talking to each other and the interpreters. And he stopped and stared for about a minute watching their communication. I observed this, and I thought, “Holy hell. He never exposes himself to everyone like that.” And I thought, “They got him. He is seeing what the challenge of communication is—in one respect anyway—and they’ve got his attention.”"
According to Al, this kind of fascination played a significant role in the DeafBlind community’s political success. In a representative democracy, no one should care about this tiny group of people and what they are asking for, at least in theory. But Al said that for this senator, and for others, there was a “lost tribe” aspect to it:
"Here’s this thing that you didn’t know exists, and it exists. And DeafBlind people were saying they wanted to come into the fold. They weren’t trying to impress upon us their particularity or their specialness. They just wanted what everyone else wanted."
Political recognition led to increased resources, which drew even more DeafBlind people to Seattle. DBSC had a dependable annual operating budget. Work and personal lives could therefore be separated since interpreting services were provided outside of the Lighthouse. There were also advocacy services provided and space for community functions that were not associated with work. All of this was made possible by an elaborate network of highly specialized interpreters that had been built in the years prior, and it was largely about securing resources that would pay for those interpreters.
From the earliest years of the Seattle DeafBlind community, sighted media- tors have played an instrumental role in communication. For example, several people I interviewed told me about a Halloween party, which was held in apartments owned by the Lighthouse. A small group of Deaf, DeafBlind, and hearing people attended the party. ASL was the language everyone had in common and people just “did what came naturally” to communicate. There were no official interpreters working and at least some of the sighted people present thought about guiding and relaying information about the environment as part of “hosting.” One person explained: “If someone looked lost, someone else would help them find what or who they were looking for.” Since blindness was so stigmatized elsewhere, a willingness to do simple things like this was unusual. It was also very different from what some of the DeafBlind people had anticipated for their futures. For example, some were told that once they went blind, they would only be able to spell words out letter by letter using the manual alphabet, while others couldn’t imagine any life at all without vision. So, as one sighted participant explained, “There was a lot of excitement. What had been impossible was suddenly possible, and everyone was really excited about it.” With the establishment of DBSC, its interaction with the interpreter training program at Seattle Central Community College, and the employment and community programs at the Lighthouse, early meth- ods for addressing communication like these were ramped up and reinforced by institutional structure.
2.3 DeafBlind Identity
As modes of communication became conventionalized, ways of being Deaf- Blind emerged which were not rooted in the world, but in conventions for working with sighted interpreters, through whom DeafBlind people accessed the world. By the 1990s when I entered the community as an undergraduate interpreting student, “tunnel vision” and “tactile”—terms that derived from two approaches to access—came to represent the main identities a DeafBlind person could assume. In both cases, the aim was to maintain connections to the world of the sighted. In order to prop that system up, the extensive socio-political efforts I have just recounted, were required. In 2006, just before protactile practices began to emerge, I asked Adrijana what the word “community” in “DeafBlind community” meant. She said:
"The only basis for community is an external influence, against which a group of people needs to protect themselves. Otherwise, what’s the purpose of a commu- nity? Communities are for building internal strength in order to protect yourself and other people who are in a similar position. It is a place to feel safe, but against who? If there is no answer to that question, then why bother? For us, it’s obvious. Hearing people make all kinds of unnecessary barriers for us that we have to find a way around. There are social issues and economic issues. On every level we have things we have to fight for. So even though we have nothing in common with each other, and we may not even like each other on a personal level, we have to work together to try to improve what we have and what we can do. We need each other. We’re not really a community based on a common language. There is everything from ASL, to people who were never really exposed to language, to people who grew up hearing, speaking English. Likewise, we’re not really a community based on common life experience. We all come from very different backgrounds. Still we are bound to each other in certain ways."
For Adrijana, the Seattle DeafBlind community was an internally diverse group, not tied together by a common language, or even by common communication practices. The “community” was a political alliance, aimed at pushing back against dominant norms that generated unnecessary barriers. This statement, while particularly clear and elaborated, was similar to things I had heard when I was in training to become an interpreter. My teachers and professional interpreters in a mentoring role would say, “DeafBlind people are all different. One approach will not work with them all,” or “Communication in the DeafBlind community is very diverse.” Later, during my time serving on the board of several Deaf and DeafBlind non-profits, the same warnings were issued: “Remember, not everyone comes from a ‘Deaf culture’ background. We have to serve everyone.” DeafBlind identity in the Seattle DeafBlind community was established as an oppositional category, used to obtain resources from local and state government to pay sighted interpreters, and other professionals, such as advocates, which required institutional resources, such as physical space, and funding to pay professionals, train them, and coordinate their services with the needs of community members.
There were significant benefits to having an institutional structure that could provide services in a consistent and sustainable way (very few places in the United States had such things). However, problems persisted and over time worsened. By the time I started my dissertation fieldwork in 2010, a new protactile theory was beginning to be articulated by DeafBlind leaders to explain the problems they had and also to map out a new course of action. From that perspective, in retrospect, establishing a DeafBlind identity was critical. The protactile movement would have never emerged if it weren’t for the availability of physical spaces where meetings and workshops could take place, bus drivers who had been trained to guide DeafBlind people onto buses, sighted people who could mediate service encounters to make grocery shopping, banking, attending community events, and other necessary activities possible. At the same time, there was a sense that “community” had been built on an unstable foundation. In the next chapter, I trace the effects of this on the collective—its practices and its politics—as well as on individuals, as they took on the DeafBlind identities available to them at the time.
The Seattle Lighthouse, like other organizations of its kind, combined manufacturing jobs with social services provided to the employees who were hired into those jobs (Rochester 2004). These organizations started out as “sheltered workshops for the blind,” which were originally established by schools for the blind to guarantee employment for their students upon grad- uation. According to historian Frances Koestler (1976), sheltered workshops have played an important and contentious role in the lives of hearing blind Americans since the nineteenth century and are at the center of political discourses that have intensified since the beginning of the twentieth century. The workshops are supposed to protect blind workers from the ideological and economic fluctuations that make their employability unpredictable. For example, after World War II, blind Americans who were employable during the war were, like many other groups, suddenly and inexplicably unemployable after the war.
The stated purpose of the sheltered workshop is reliable employment for groups that are vulnerable in unstable markets. But the type of employment provided by the workshops is unusual in that workers get “dignity” and “self- esteem” instead of money in exchange for their labor (Koestler 1976: 195). The slogan, “Giving people the chance to hate Monday mornings,” which can be spotted on the side of Goodwill Industries delivery trucks and elsewhere in their marketing materials, is directly related to the model of a sheltered workshop: In exchange for work, we will provide the dignity that comes with being part of the weekly rhythms of society. Monetary compensation is sec- ondary. Those in a position to benefit from that arrangement call it “charity,” but hearing blind Americans overwhelmingly see it as exploitation, and they have railed against it. More generally, they object to what sociologist Robert Scott (1969: 80–84) calls an “accommodative” approach, which focuses on creating special environments for the blind worker, instead of giving them the skills they need to find work in the mainstream. In political discourse, blind Americans claim that accommodation is actually a strategy for maintaining a large dependent pool of workers who can be exploited indefinitely, and they have advocated, instead, for an “integrative” approach.
Given these dynamics, by the early 1970s, the Seattle Lighthouse and other organizations that grew out of sheltered workshops were running low on “charity recipients.” That was a significant problem for them because by then they were into multi-million dollar contracts with Boeing and the U.S. military and their workforce was opting out. According to Koestler (1976: 226), the solution was to recruit people who were blind and had other disabilities as well, since they were less of a flight risk. DeafBlind people were part of that trend and it is clear that the roles they were stepping into were problematic. However, in general, they did not respond the way hearing blind people had. They had been socialized in residential schools for the Deaf, Deaf clubs, Deaf churches, and other Deaf organizations, where “accommodation” and “integration” were reversed in terms of their political valence.
Precisely counter to blind politics, Deaf political discourse has focused on the detrimental effects of de-institutionalization, integration, and main- streaming, since those moves often mean isolating Deaf children in spoken- language environments (e.g. Keating and Mirus 2003; Van Cleve 2007; Cheng et al. 2019). Most of the people who moved to Seattle to take jobs at the Lighthouse did so as adults who had already suffered the effects of so-called integration and had no interest in reproducing that experience. What they wanted, by the time they got to Seattle, was a place where they could be DeafBlind. Fair compensation and opportunities for advancement were not their main concern.
For example, Adrijana ended up in Seattle in her 30s after spending much of her deaf (partially) sighted childhood in hearing environments alone. After a short period of time in a Deaf school, she was transferred to an “oral” program where spoken language was the only permitted means of communication, and from there she went on to a hearing high school without interpreters. When she described the isolation and loneliness of that experience, her eyes filled with tears. She said: “When I graduated from high school, I found out that my peers had made up a name for me. Apparently, no one knew my name and they didn’t bother to ask. When I walked across the stage at graduation, they announced their made-up name instead of my real name.” She shook her head, and said, “I spent four years with those people, and they never even knew my name.”
Growing up, Adrijana had been punished, sometimes physically, for trying to communicate with gestures or signs. Years of her education had been wasted doing little other than slowly pronouncing individual English words. It wasn’t until she went to a Deaf college that she had the opportunity to be a part of a social world. The ASL she learned as a child came back slowly and after some time, she found herself immersed in a vibrant social setting. She met the man she would marry, found a field she wanted to pursue, and felt that finally her life was on track. Not long after, though, her vision deteriorated and Deaf environments started to feel as unwelcoming as the hearing environments she had grown up in. By the late 1980s, she was having difficulty with her job and her relationships. She could tell that the life she had was not going to be feasible for much longer, but she also knew about Seattle, and she was optimistic that if she went there it would be like college had been before—a place where communication and interaction would, once again, feel natural. With this in mind, she found a job in Seattle and relocated. For Adrijana and many others, the particulars of the job weren’t that important. She needed a place where she could be DeafBlind, and to her, that was inextricably tied to communication.
Others described communication access as a main reason for moving to
Seattle as well. For example, Rebecca moved to Seattle from Nevada in 1985. She had grown up around sighted Deaf people, but she said that as she lost her vision, she became isolated:
"For a long time, I lived with my mom. I didn’t work, because it was really hard to find a job. I had to rely on SSI [Supplemental Security Income] and stay with my mom, and my two sisters."
“Everyone would go to work,” she said, “and I would stay at home alone and watch TV.” When I asked her if she ever went out with friends or spent time with people outside of her family she said, “Unfortunately, many people my age kept disappearing. I had one good friend who was a teacher.” About her decision to move to Seattle, she said that the job at the Lighthouse was not what she had envisioned for herself, but:
"the DeafBlind community [in Seattle] was growing at that time, which was great, and DBSC was just being established. At DBSC, I learned about SSPs [“Support Service Providers”] who could help me with reading my mail, going to the store, etc. The DeafBlind community here was fantastic. It was so much better than Nevada. There was a DeafBlind community in Nevada, but it disappeared. So I decided to try and settle here in Seattle, and work for the Lighthouse. I realized there was a better life for me here."
Rebecca’s reasons for moving to Seattle were related to having a place to be, populated by things and people, which gave her something (anything!) to do. It wasn’t as if she was going from one life to another. Life itself was eroding (the people and the community were “disappearing”) and against that back- drop, Seattle appeared as a life raft. The job itself was a concession. In recalling her work history at the Lighthouse, she told me that one of her first placements was in a department that manufactured fire fighting equipment. She said:
"They sewed sleeping bags for firemen, but it wasn’t something I was good at. I tried, but it was frustrating. They noticed that I wasn’t very fast at it, so I started assembling mops, and then also canteens. I went back and forth between several departments. But after a while, the department making the sleeping bags closed down because they weren’t making enough money on it. So I started doing work on the Boeing contract—mostly filing. But I used to get really sleepy doing that job. It was incredibly boring."
Still, Rebecca was glad she had the job because she could live in Seattle, where special services made it possible to carry out tasks like grocery shopping and attending community meetings and events. At home in Nevada, she would be sitting at home alone instead. Her main concern was being in an environment that enabled communication and interaction. Fair compensation, intellectual stimulation, and other factors were less important. With communication access came intelligibility, as well. Rebecca and many others who moved to Seattle from elsewhere said that the mode of access they chose made them legible as a particular kind of DeafBlind person. People who communicated by touching the hands of the ASL signer were “tactile people.”
People who chose instead to stand far away from the ASL signer, were “tunnel- vision people.” No one in Seattle thought that you were backing up because you were aloof, or you were touching them because you were interested in them romantically.
However, intelligibility was made possible by the fact that DeafBlind people were communicating in idiosyncratic ways, across different modalities, and that caused problems of its own. The Lighthouse staff recognized this early on as the DeafBlind employment program started to grow. Communication between employees was so strained, in fact, that physical fights were not uncommon. I interviewed Joey, who was one of the people called in to address the problem. He was Deaf and his official title was “Communication Specialist.” He explained that at that time, the DeafBlind employees “had really mixed backgrounds. Some of them had limited exposure to language in general because they had not had access to a perceptible language in the years when first language acquisition usually occurs, or they used a different sign system, such as ‘Signed Exact English,’ which is an invented system that attempts to represent English, manually. It was just like deaf people who were not blind,” he said:
"Many came from hearing families, so they had really weak foundations in their language development. When DeafBlind people communicated directly with one another there were all kinds of misunderstandings that would lead to accusations and fighting. So as a communication specialist, I would have to intervene and explain, “that person can’t see you. They have to use tactile reception, so you have to sign tactually to them.” Or maybe one person doesn’t really know English and the other one is throwing big [fingerspelled] English words at them and they start calling each other names."
The individuals who were all lumped together at the Lighthouse would have been part of very different networks in larger Deaf communities and even if they were sighted Deaf people they might have had some trouble communicating. These problems were never sorted out because sighted inter- vention became so ubiquitous that DeafBlind people rarely had to commu- nicate directly with one another at all. Instead, they communicated through sighted interpreters. This was possible, in part, because Seattle Central Com- munity College started producing sighted interpreters trained specifically to work with DeafBlind people, and the number of qualified interpreters grew rapidly.
2.1 Building a Bridge
Seattle Central Community College established a program for Deaf students in the 1960s and an interpreter training program in the 1970s. According to Laura, a Deaf student who was there in the late 1970s, there were about 100 Deaf students enrolled at the time. Some took two years of general require- ments and then transferred to a four-year university, such as Gallaudet. Some learned technical skills like boat-building or mechanics. The Deaf program and the interpreter training program were housed in the same building so there was a lot of interaction between hearing and Deaf students. Laura said:
"It became really common for people to get together in the cafeteria, and no one cared if you were Deaf or hearing, as long as you were signing. It was a really thriving social scene. That’s what it was like back then."
Early on, when DeafBlind people moved to Seattle to work at the Lighthouse, they were part of a very small group. Given the diversity in linguistic, cultural, and educational background, it was likely that they would either not be able to communicate with other DeafBlind people or that they would have nothing at all in common with them and would not feel compelled to communicate with them. Seattle Central Community College was an important resource for broadening the pool from which potential interlocutors, friends, and communication supports could be found, and they were also seen as a bridge to the “hearing world.” Early on, ties between the Lighthouse and Seattle Central were informal, but over time, the relationship was embedded in institutional structures. First, a small number of specialists with ASL-related expertise who were affiliated with Seattle Central in some capacity, were hired at the Lighthouse in permanent positions. In 2010, I interviewed Dawn, who was one of those specialists. She explained that the institutional culture of the Lighthouse at the time was very different from what they, as interpreters (who were almost exclusively women), were used to and they did not encounter a warm welcome upon arrival. In Dawn’s words:
"We were relegated to a corner and given one tiny desk to share between four people. “four pairs of knees all trying to share the same knee-hole” [laughs]. Then Mary brought in a tiny sewing desk for me, and I thought, “That’s fine, I don’t need much. I’m going to be out doing stuff anyway.” We were told to stay out of the front area [where serious business was taking place]." However, according to Dawn, their team was young and energetic, and almost immediately they started to win over the “stuffy manufacturing executives”:
"You know, you run into the president’s office, and say, “I need your car keys”, and he says, “My car keys?” and you say, “Yeah.” And he asks you why, while throwing them your way, and you say you’ll tell him later. We were this flash of life in an otherwise dimly lit room."
Dawn suggested that within the walls of the Lighthouse, the 1950s were alive and well—“drinking lunches” and all. She and the others who came in with the DeafBlind program brought the ’80s with them:
"It was like that. But you know, they were trying to find common ground. We [the staff of the DeafBlind program] have always stuck out like sore thumbs. It’s like Mary Poppins descending into stuffy George’s house. This is really a very conservative manufacturing company, and we have always been something else."
In these early years, there was a sense more generally that the Seattle Deaf- Blind community was adjacent to local institutions—drawing resources, but not being defined or subsumed by their structure. At the Lighthouse, adjacency had to do with the fact that organizations of its kind traditionally employed or served hearing blind people. Communication specialists and interpreters who came to work at the Lighthouse in the 1980s had been educated in programs that focused on the history, culture, and language of Deaf people and the analytic skills needed to mediate between their minority perspective and that of the larger and more dominant hearing society. When they came to the Lighthouse, they had to learn how to extend their knowledge and expertise to include things that would be relevant for Deaf people who were also blind or becoming blind. Some things required improvisation, while others fit fairly neatly into the structures, categories, and practices that were already in place in this new institutional environment. For example, one of the sighted specialists was hired to teach “independent living skills,” a recognizable category in institutions that serve blind people. These classes included instruction on how to cook without vision, how to read Braille, how to label one’s clothes with Braille labels to keep track of the colors, and so on. The Department of Services for the Blind (DSB) provided these services, but only in spoken English, since nearly all of their clients were hearing.
When the numbers of DeafBlind people started growing in Seattle, it became cheaper and more effective to train people who already knew ASL to provide the training directly rather than hiring interpreters. At DSB, these techniques or strategies were taught, for the most part, by sighted experts to adults who had become blind. Given this distribution of expertise, tactile reception of ASL fit in easily as an additional “strategy,” or “tool.” Just as Braille was a tool that helped people access written English, tactile reception of language was treated as a tool that could help people access ASL. Fitting DeafBlind reality into the categories and authority structure of the Lighthouse, then, was one factor that contributed to the maintenance of visual modes of communication and prevented DeafBlind people from building intuitions about tactile environments.
Meanwhile, interpreting and translation, framed explicitly as bridge-building, actually reinforced these anti-tactile tendencies. Interpreters are trained to mediate between languages—in this case ASL and English—at the level of pragmatic inference. The goal is to capture not what the speaker says, but what they mean to convey in a way that will be interpreted as grammatical and culturally appropriate to the addressee. If this is the starting place and the addressee is blind, the most reasonable thing to do is “add in” the information needed to draw the relevant inferences. For DeafBlind people, this meant that more and more of the environment was described, and less and less was lived in. At the time, moving in this direction was viewed as a reprieve from encroaching blindness. It was not a bridge between tactile and visual worlds, but a bridge leading back to the world they once knew. If a person had stopped going to church, or attending dinner parties, for example, they could now return to those activities, with an interpreter. If they had stopped attending group meetings at work, they could now do so with an interpreter. If they had stopped going out past dark, they could now do so with an interpreter. The world, as it was already known, could be preserved or prolonged.
In the absence of a tactile world and tactile language, interpreters were
also necessary for political organization. With their involvement, the Seattle DeafBlind community achieved political recognition from state government, which led, in turn, to the creation of the DBSC—an institution that would play a crucial role in the community’s future.
2.2 “We Need Interpreters”
When I asked people about the origins of DBSC, the response often began, “Do you know Dan Mansfield?” And then the following sequence of events was recounted: It was the late 1980s. Every year, there was a new influx of DeafBlind people, and as the community grew, flaws in the local infrastructure became more obvious. Resources were taxed and something had to be done. To convince decision-makers of this need, the community turned to Dan Mansfield—a DeafBlind man, known for his good looks and his charm. His aim would be to convince representatives of the Washington State government that there was a real and pressing need for interpreters, and that those interpreters had to be provided by a new and independent DeafBlind organization.
I pieced together this part of the community’s history digging through big boxes of old documents and newspapers. Some of it came from the Lighthouse archives and a lot of it came from ethnographic interviews. On the points I have just outlined, there was significant convergence across interviewees, but the following story was almost exactly the same every time:
"Looking fantastic, Dan walked confidently toward the committee. They were seated at a long table on a raised platform at the front of the room. Dan told the interpreter, who had accompanied him, not to speak, and then took his place before the committee. He pulled a stack of index cards out of his pocket. Each card had a printed letter on it. He began to spell his message one letter at a time: “I. A. M. ” And then he slipped and all of the cards fell on the floor. People jumped up and tried to help him collect the cards, and it was awkward and uncomfortable for everyone. Finally, he stood up and started again with the cards. This time, though, they were out of order and his message was indecipherable. There was no way to interrupt him because the interpreter had been instructed not to participate, so he went on like that, slowly spelling unintelligible words. Then he told the interpreter to start interpreting for him again. All he said to the committee was, “We need interpreters.” And DBSC has been funded ever since."
As I inquired further about the history of DBSC, I learned, of course, that there were broader efforts, undertaken by many, to achieve political recognition and to secure funds for services.
One such effort was led by administrators at the Lighthouse. Working with DeafBlind members of the community, they created a “needs assessment” and shared it with the directors of all of the relevant state agencies. Leah, one of the Lighthouse administrators in charge of the project, explained in an interview:
"One of the key things we did was put together a matrix. It was done by hand because it was before computers. It was a grid sheet. We had services and organizations, one on each axis, and we put an X where there were services, and no X where there were no services. That became a tool for us to make our case."
During a 12-month period of dissertation fieldwork, I found the original matrix in a box of pictures and old newsletters at the Lighthouse. It was hand-drawn and the ink had faded. Following up on the stories I had heard about it, I interviewed Al, who was the director of DSB at the time. He told me:
"By the time I saw the needs assessment, [Seattle] was a place of choice for Deaf- Blind people. Large numbers, proportionately, so it created a real challenge for metro, [VR, DSB, and other state agencies]. We had a real problem."
The solution, he explained, was to create DBSC—a separate non-profit organization that would provide the services other agencies couldn’t. One of the key things DBSC needed to do was secure funds for specialized interpreters who could act as guides, relay environmental information, and provide transportation outside of work hours. A more permanent, institutional structure would, as Al said, ensure that DBSC “was not subject to the whims of whoever happened to be directing the three agencies.”
According to Leah, everyone thought it was a great idea, but no one was jumping out of their seat to pay for it. So the aim at this point was to convince the governor’s office to establish a bill that would secure funds for DBSC. In order to achieve their goal, political representatives had to become aware of the need for specialized interpreters. Groups of DeafBlind people and sighted advocates and interpreters started making regular trips to talk to individual senators and representatives at the capitol with the goal of demonstrating, in person, the important role interpreters played. One sighted interpreter had a Volkswagen bus that everyone would pile into and go down to the Capitol for the day. They planned their appearances strategically, showing up, for example, during the lunch hour on days when important meetings were happening. There were sleepovers the night before, where people would practice their speeches repeatedly, until they were concise and flawless. Real relationships were growing and sighted interpreters, according to both DeafBlind and sighted people, were abundant and able to volunteer their time.
In addition to demonstrating the need for interpreters, activists also wanted the legislature to force the relevant state agencies to put a proviso in the budget to secure funds for interpreters, regardless of who happened to be the director of the obligated agency. During this time, DeafBlind people were a persistent presence on the Capitol campus. For example, Al told me about a particularly
memorable moment when he felt political recognition had been achieved:
"Jim McDermot was chairman of the Ways and Means committee. It was really hard to get a meeting with him, and I remember the DeafBlind folks were down that day.We had come to his building—his office was in a suite. There was a waiting room and a conference room. And he had an office in the back in the ground floor of this building. Dan Mansfield and four or five people were standing in the hallway outside of his door. He was leaving his office, about to go out to the capitol. He was so hard to meet with, that typically people would ambush him--Senator can I walk with you. Every once in a while, he would see someone he wanted to talk to, and he would walk with them, but most of the time, [he would bolt]. So he stepped out and he glanced down the hall, and he saw several DeafBlind people talking to each other and the interpreters. And he stopped and stared for about a minute watching their communication. I observed this, and I thought, “Holy hell. He never exposes himself to everyone like that.” And I thought, “They got him. He is seeing what the challenge of communication is—in one respect anyway—and they’ve got his attention.”"
According to Al, this kind of fascination played a significant role in the DeafBlind community’s political success. In a representative democracy, no one should care about this tiny group of people and what they are asking for, at least in theory. But Al said that for this senator, and for others, there was a “lost tribe” aspect to it:
"Here’s this thing that you didn’t know exists, and it exists. And DeafBlind people were saying they wanted to come into the fold. They weren’t trying to impress upon us their particularity or their specialness. They just wanted what everyone else wanted."
Political recognition led to increased resources, which drew even more DeafBlind people to Seattle. DBSC had a dependable annual operating budget. Work and personal lives could therefore be separated since interpreting services were provided outside of the Lighthouse. There were also advocacy services provided and space for community functions that were not associated with work. All of this was made possible by an elaborate network of highly specialized interpreters that had been built in the years prior, and it was largely about securing resources that would pay for those interpreters.
From the earliest years of the Seattle DeafBlind community, sighted media- tors have played an instrumental role in communication. For example, several people I interviewed told me about a Halloween party, which was held in apartments owned by the Lighthouse. A small group of Deaf, DeafBlind, and hearing people attended the party. ASL was the language everyone had in common and people just “did what came naturally” to communicate. There were no official interpreters working and at least some of the sighted people present thought about guiding and relaying information about the environment as part of “hosting.” One person explained: “If someone looked lost, someone else would help them find what or who they were looking for.” Since blindness was so stigmatized elsewhere, a willingness to do simple things like this was unusual. It was also very different from what some of the DeafBlind people had anticipated for their futures. For example, some were told that once they went blind, they would only be able to spell words out letter by letter using the manual alphabet, while others couldn’t imagine any life at all without vision. So, as one sighted participant explained, “There was a lot of excitement. What had been impossible was suddenly possible, and everyone was really excited about it.” With the establishment of DBSC, its interaction with the interpreter training program at Seattle Central Community College, and the employment and community programs at the Lighthouse, early meth- ods for addressing communication like these were ramped up and reinforced by institutional structure.
2.3 DeafBlind Identity
As modes of communication became conventionalized, ways of being Deaf- Blind emerged which were not rooted in the world, but in conventions for working with sighted interpreters, through whom DeafBlind people accessed the world. By the 1990s when I entered the community as an undergraduate interpreting student, “tunnel vision” and “tactile”—terms that derived from two approaches to access—came to represent the main identities a DeafBlind person could assume. In both cases, the aim was to maintain connections to the world of the sighted. In order to prop that system up, the extensive socio-political efforts I have just recounted, were required. In 2006, just before protactile practices began to emerge, I asked Adrijana what the word “community” in “DeafBlind community” meant. She said:
"The only basis for community is an external influence, against which a group of people needs to protect themselves. Otherwise, what’s the purpose of a commu- nity? Communities are for building internal strength in order to protect yourself and other people who are in a similar position. It is a place to feel safe, but against who? If there is no answer to that question, then why bother? For us, it’s obvious. Hearing people make all kinds of unnecessary barriers for us that we have to find a way around. There are social issues and economic issues. On every level we have things we have to fight for. So even though we have nothing in common with each other, and we may not even like each other on a personal level, we have to work together to try to improve what we have and what we can do. We need each other. We’re not really a community based on a common language. There is everything from ASL, to people who were never really exposed to language, to people who grew up hearing, speaking English. Likewise, we’re not really a community based on common life experience. We all come from very different backgrounds. Still we are bound to each other in certain ways."
For Adrijana, the Seattle DeafBlind community was an internally diverse group, not tied together by a common language, or even by common communication practices. The “community” was a political alliance, aimed at pushing back against dominant norms that generated unnecessary barriers. This statement, while particularly clear and elaborated, was similar to things I had heard when I was in training to become an interpreter. My teachers and professional interpreters in a mentoring role would say, “DeafBlind people are all different. One approach will not work with them all,” or “Communication in the DeafBlind community is very diverse.” Later, during my time serving on the board of several Deaf and DeafBlind non-profits, the same warnings were issued: “Remember, not everyone comes from a ‘Deaf culture’ background. We have to serve everyone.” DeafBlind identity in the Seattle DeafBlind community was established as an oppositional category, used to obtain resources from local and state government to pay sighted interpreters, and other professionals, such as advocates, which required institutional resources, such as physical space, and funding to pay professionals, train them, and coordinate their services with the needs of community members.
There were significant benefits to having an institutional structure that could provide services in a consistent and sustainable way (very few places in the United States had such things). However, problems persisted and over time worsened. By the time I started my dissertation fieldwork in 2010, a new protactile theory was beginning to be articulated by DeafBlind leaders to explain the problems they had and also to map out a new course of action. From that perspective, in retrospect, establishing a DeafBlind identity was critical. The protactile movement would have never emerged if it weren’t for the availability of physical spaces where meetings and workshops could take place, bus drivers who had been trained to guide DeafBlind people onto buses, sighted people who could mediate service encounters to make grocery shopping, banking, attending community events, and other necessary activities possible. At the same time, there was a sense that “community” had been built on an unstable foundation. In the next chapter, I trace the effects of this on the collective—its practices and its politics—as well as on individuals, as they took on the DeafBlind identities available to them at the time.
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