Disability Studies Quarterly
Spring 2006, Volume 26, No. 2
<www.dsq-sds.org>
Copyright 2006 by the Society
for Disability Studies


Providing a Place in the New History of Disabilities for Communication Access

Judith Felson Duchan, Ph.D.
Department of Communicative Disorders and Sciences
State University of New York at Buffalo
3435 Main Street, 126 Cary Hall
Buffalo, NY 14214-3023
E-mail: duchan@buffalo.edu


The discourse of the disability movement often contains references to different aspects of physical and social access. The access metaphor has been key to reframing a medical model rendering of disability with a socio-political one. That is, describing disability in access terms serves to shift the source of social exclusion from problems of impairment, located within the person, to problems of access, located in the person's environment.

Histories of the disability movement contain significant historical milestones related to access (Pelka, 1997; Fleischer & Zames, 2001; Krieger, 2003; Stroman, 2003). They include descriptions of events that have resulted in increased or reduced access to various aspects of society–schools, work, the arts, transport, technology, independence. For example, in a historical timetable on a disability rights Web site, one finds entries about when the first wheelchair was patented (1969) and about the Architectural Barriers Act (1968) that mandated that buildings be accessible to people with physical disabilities (Pelka, 1997). Both of these are significant milestones in the history of improved physical access for those with disabilities.

The discourse of access in these histories, while intended to be generic, strongly favors physical access. Communication access, for example, is given short shrift. This essay will first describe ways access is manifest in the discourse of disability history. It will then demonstrate, through example, that histories currently written are biased against communication access. It will then consider why this is so and will end with what a new disability history could look like were it to give communication access a more prominent role.

The Access Metaphor

This access metaphor, grounded in physical imagery, depicts things that prevent participation as "barriers" or "obstacles." Ramps or curb cuts, then become a means for removing or circumventing these physical access barriers so as to gain access to a destination. While other kinds of access avenues and barriers, such as those having to do with communication and social interaction, are included in these new histories, they are relegated to second place in overall coverage of significant events in the disability movement.

The access metaphor, because of its imagery involving pathways, barriers, and destinations, tends to be used in reference to specific contexts. It is called upon when describing specific requirements, specific barriers, and specific destinations: access support; wheelchair access, computer access, sign language access, access to museums.

Its general use, such as the one calling for "equal access" for people with disabilities, allows for domains and institutions to serve as destinations. But it is in reference to specific contexts, when talking about particular barriers and destinations that one is most apt to see the access metaphor used. It tends not to be used when the destination and barriers are more difficult to determine, or in contexts that have no identifiable agency. For example, when Paul Longmore and Lauri Umansky make an appeal for a new disability history they do so without calling directly upon the access metaphor (2001). They do not treat the discipline of history as a destination, nor do they portray the absence of Disability Studies from histories in terms of barriers to access. So, in this context of describing general exclusion, the access metaphor is not appropriated. Were it to be used, it would be to say that people reading histories are not afforded access to information on disability–or the like. That is, it would need a context that has agency (people looking for disability information) and a blocked pathway (no information available in typical histories).

Evidence that communication access has been excluded from the interpretive frame of the new disability history

There are a number of recent publications on the events of the disability rights movement beginning in the 1970s (Pelka, 1997; Fleischer & Zames, 2001; Krieger, 2003; Stroman, 2003). These new disability histories have to do with the experiences and accomplishments of individuals associated with the movement, with the movement's legislative and social achievements, and with the battles that disability advocates have fought, won, and lost. When describing the specific domains of accomplishment of this period in history, Longmore and Umansky draw upon the access metaphor:

Advocates lobbied against discrimination. They demanded "equal access" to public transportation, public accommodations, and telecommunications, to school and work, to 'independent' or 'congregate' living in the community rather than in institutions (2001: 11).

That is, advocates were demanding that they have a means for getting to different types of destinations/goals. This "getting to" sense of access is more likely to conjure up the need for ramps and physical support than the need for communication accommodations.

But these histories, by adhering to the physical access interpretation of equal access, have failed to give proper attention to communication access. Such attention would require these historians to broaden their interpretation of "equal access" to include depictions of language, literacy, and conceptual barriers. And the access "destinations" would be related to communication and social participation, as well as places. A history of communication access might, for example, focus on language, literacy, or social barriers that must be overcome to achieve an "appropriate education" or a "reasonable accommodation" or a "least restrictive environment." While one can richly interpret the Longmore and Umansky paragraph above to mean communication access to institutions–especially when imagining barriers and access to telecommunications–it is not apt to be the first rendering of a physical access metaphor.

Doris Fleischer and Frieda Zames have written a history of the disability rights movement in America (2001). They, like Longmore and Umansky, draw upon the access metaphor to describe some of the movement's accomplishments. Their most prevalent use of access terminology is when describing transportation (chapter 4), and technology (chapter 9). In the transportation context, the type of access is physical. The authors describe the disability struggles and legislation aimed at attaining physical access to buildings, buses, and rapid transit systems.

When talking about access in technology, the authors still focus mostly on the physical. They have sections on universal design in architecture, the technology involved in wheelchair accessible taxis and new wheelchair design, and in making building adjustments such as elevators and building ramps.

However, there are two quite short but significant sections in the technology chapter in which Fleischer and Zames make mention of communication access. First, in a section on classrooms and laboratories, the authors describe the use of instrumentation such as oscilloscopes and speech synthesizers to make laboratories accessible to "people with sensory and speech impairments." It is in a section on "the computer as an accommodation" that the authors treat communication access most fully. They describe the uses of (1) an interactive television monitor so that those who are deaf can sign over the telephone; (2) a Kurzweil reader, voice synthesizer, and Braille keyboard for use by people with visual disabilities; (3) voice-and-eye gaze-activated computers for use by those who are unable speak or use their hands to write and (4) home computers for distance learning and home-based employment for those who are homebound.

This predilection to equate communication access advances with technological advances is problematic for giving communication its rightful place in the disability movement. The external, mechanical, non-social focus casts communication within a conduit metaphor. This metaphor depicts communication as messages being passed to one another, aided by mechanical devices that provide symbols for coding the messages and by other devices that aid in the transmission of those messages.

Mairian Corker and Sally French (1999) comment further on the dehumanizing potential of technological solutions for another reason:

...the dominant discourse on disability attributes negative ascriptions to people who have too close a relationship with technology, in part as a result of valorization of the notion of autonomy from others in Western culture (p. 5).

Despite their focus on technology, Fleischer and Zames show an appreciation for the significance of communication access. However, when selecting milestones in the movement for their time line of historical accomplishments, they omit these communication access achievements, such as the Braille literacy campaign waged by the National Federation for the Blind in 1990 (National Federation of the Blind, 2006). Of the 100 milestones listed, 16 relate directly to physical access and two to communication access–one on the invention of Braille, and the second on the first treatment of sign language as a legitimate language (Fleischer & Zames, 2001, pp. xxi-xxv). So, in their general summary of advances in the disability movement, communication access again takes a back seat.

Why communication access has been given short shrift in many historical accounts of the disability movement

There are several possible reasons for the tendency for disability historians to marginalize communication access. One might have to do with the very choice of the access metaphor–a structure that derives from a physical domain. The problem arises not because the metaphor is restrictive in its possible interpretations. Like all metaphors, the access metaphor can be richly interpreted. Its scarcity may be because in these histories the physical and communication access interpretations are in competition. Often access is talked about generally, such as the reference to "equal access" in the above paragraph of Longmore and Umansky. These references are likely to be interpreted in concrete images having to do with physical access. Since physical access barriers are visible, and thereby more obvious and maybe more familiar than barriers to communication access, the physical access interpretation is likely to win out in this interpretive competition. One can see that curbs and stairs create inaccessible pathways and entryways. It is perhaps more of a stretch for the uninitiated to think of small print, noisy environments, or complex language when interpreting the metaphor in these general writings.

A second partial explanation for the secondary status of communication access is that those who have been at the forefront of the disability movement have been people with physical disabilities. The formation of the League of the Physically Handicapped was the watershed event that started the recent movement on its way in the U.S. (Longmore & Goldberger, 1997); arguments within the movement about the theoretical exclusion of physical body are usually grounded in examples about the barriers to physical access; and those who are creating the histories of the disability movement either through personal interviews or in their writings are typically people with physical disabilities.

Just as people with physical disabilities are more likely to focus on physical access barriers, those with communication disabilities are the ones that would be most likely to identify and raise consciousness about communication access barriers (Thomas, 1999). It would be natural and appropriate for disability historians with communication disabilities to make the case for the importance of equal communication access. However, because of their communication access barriers, members of this group are at a disadvantage. Unless supported, listened to, and given the time and attention needed to communicate, those with communication disabilities will not have their voices heard (for examples of the kinds of support that might be supplied see Bauby, 1998; Brown, 1998; Robillard, 1999; Parr, 2004). The result is that people with who require communication accommodations, such as augmentative systems or supported communication are not well-represented in the histories of the disability movement. Nor are the discussions of the barriers that prevent them from having their voices heard.

Deafness and communication access

The history of deafness plays a central role in the literature on the new disability history (e.g. Croce, 1985; Padden & Humphries, 1988; Van Cleve & Crouch, 1988; Baynton, 1992, 1996; Cohen, 1994; Van Cleve, 2000; Edwards, 2001). The discourse on deafness provides a ready context for the use of the communication access metaphor. A strong theme in these histories has been how people with hearing loss have been excluded from the hearing world. So, one would expect to see documented the invention or impact of communication access "ramps" such as amplification, sign language interpreters, captioned text, TTY, desegregation, and school inclusion. Indeed, when searching on the Web for the phrase "communication access", the most common result relates to those who have hearing loss or who are deaf.

But new deaf histories tend, instead, to focus solely on those crucial aspects of the disability movement that pertain to the liberation struggles, such as the one involving the use of sign language and of deaf representation in deaf institutions. So, even for deaf persons, whose cultural history is well-represented in the new disability history, there is has been little coverage of advances and barriers in communication access, a key to their social and political oppression.

So even the histories of deaf persons told within a socio-political ideology fail to give sufficient attention to communication access. This calls for a restructuring of and opening up of the discourse frames used in the new disability history.

What a new disability history would look like, were it to include communication access

A reframed new disability history that would provide a conceptual and political place for communication access should be done by and with people with communication disabilities, including people who have complex communication needs. Following the familiar World Health Organization's classification system, for example, such a history could explore the various kinds of barriers, such as information given only in print or only with sound (environment), affecting communication (activity), with special attention to the stories of people with impairments that have affected their communication activities e.g., impairments that involve hearing, vision, or cognitive or motor systems (impairment) (World Health Organization, 2001).

In keeping with the mandate of "nothing about us without us," disability advocates with communication disabilities should be invited to report on their experiences, so that environmental barriers to communication access can be identified and milestones in overcoming them can be documented. Interviews with people who have complex communication needs could provide the much needed historical documentation of the nature of the struggles against environmental barriers. For example, Susie Parr has conducted interviews with people who have severe aphasia (2004), giving them voice, and depicting their lack of communication access to all aspects of society. Another such source from recent disability history is a collection of stories by those who have fought for their right to use facilitated communication (Biklen, 2005). This method of communication has been embroiled in a free speech struggle with interesting parallels to past struggles involving the right to use sign language.

Once the need for documenting communication access is acknowledged by historians of disability, histories can be done that show how the medical discourse has silenced all those with disabilities, not just those with communication-related impairments. For example, David Gerber, in one of the few studies of this type, has reexamined the pioneering work of Robert Edgerton, showing how Edgerton's adherence to the medical framework prevented him from giving voice to those he reported on (1990).

Prevalent in the autobiographic histories of those in the disability movement are the difficulties people have formulating their stories and having them heard. For example, people typically describe difficulties they have had in describing their disability to themselves and others. Anne Gere and Cynthia Gere ask "How shall we call the disability that shapes our lives?" (2000: 133); James Porter wonders "How does one write the disabled body?" (1997: xiii); Kenny Fries reports: "In the summer of 1989, I took the initial steps of finding the language, unearthing the images, shaping the forms with which I could express an experience I had never read about before, so that my experience as a person with a disability could become meaningful to others." (1997: 1-2). Historical accounts of these communication barriers need to be explored and interpreted.

Another theme about communication in people's autobiographic reports, has to do with dilemmas they have negotiating communication situations with able- bodied conversational partners. French, when arguing for the inclusion of impairment in the discourse of disability, talks about when and whether to tell her conversational partner or audience about her disability. She also describes her visual impairment getting in the way of her being able to interpret the nonverbal signals of her conversational partners (1999: 15).

An obvious concern when considering communication barriers facing people with disabilities are the implications of demeaning, exclusionary, impenetrable language. There are a few professionals and people in the disability movement who are currently addressing these issues by designing and reporting on programs to promote and facilitate communication access (Kagan, 1993; Goode, 1994; Stineman, et al, 1997; Pound, Parr, Hewitt (in progress); Parr, Watson & Woods, (in press). It would be instructive in this effort to place these fairly recent writings in their historical context. A history on communication access and disabling discourses would provide a context for current advances or setbacks. Included in such a history would be the complaints leveled by those in the new disability movement about people with disabilities being treated as pitiable, as tragic, and as incompetent (Zola, 1988; Shapiro, 1993).

Finally, a reframed disability history would require in-depth treatments of the communication access barriers overcome by Demosthenes, Helen Keller, Laura Bridgman, and Laurent Clerc, to provide historical contexts for the more recent accomplishments of people like Jean Dominique Bauby, Christy Brown, Stephen Hawking, Sharon Kowalksi, Albert Robillard, Sue Rubin, and Ruth Sienkiewicz.

References

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Biklen, D. (2005). Autism and the myth of the person alone. NY: New York University Press.

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Copyright (c) 2006 Judith Felson Duchan



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