Choosing Accommodations:Signed Language Interpreting and the Absence of Choice
This paper carves out a topic space for discussion about the ethical question of whether input from signing Deaf consumers of interpreting services ought to be included in the provision of signed language interpreter accommodations. The first section provides background about disability accommodations and practices, including how signed language interpreting accommodations are similar and dissimilar to other kinds of disability accommodations. In the second section, I offer a personal narrative of my experience as a Deaf academic who has been excluded from the interpreter selection process, highlighting some of the harmful consequences of such exclusion. In the subsequent two sections, I describe and analyze the process of choosing interpreter accommodations, starting with the process of requesting signed language interpreters and the institutionalization of this process, followed by a brief overview of privacy and autonomy concerns from the standpoint of the signing Deaf consumer. The penultimate section considers some objections to the proposal of involving more consumer choice in signed language accommodations. I conclude the paper with some concrete suggestions for a more Deaf-centered, inclusive process for choosing interpreter accommodations.1
The ethical and philosophical issues of choosing disability accommodations, particularly regarding human service provider accommodations, have not received much attention in the academic literature. Signed language interpreting is an especially complex accommodation that requires assessment of the deaf person's language knowledge and facility in a society where the many varieties of deaf education have generated a continuum of American Sign Language (ASL) and signed English. Signed language interpreters with variable levels of skill and proficiency flock to work in locations with high demand for their services, sometimes with little regulation and consumer protection, due to laws that mandate the [End Page 267] provision of reasonable accommodations and a national shortage of signed language interpreters. In such a setting, the Deaf consumer's preferences and desires are often overlooked or dismissed.
What are some of the consequences of leaving the signing Deaf person outside of the process of choosing accommodations? Should signing Deaf people be permitted to influence interpreter selection for their accommodations? What would provision of signed language interpreters look like if signing Deaf people were actively involved in the process of choosing their accommodations, including choosing specific interpreters for particular events?
This paper is best viewed as one that carves out a topic space for discussion about the ethical question of whether input from signing Deaf consumers of interpreting services ought to be included in the provision of signed language interpreter accommodations. The first section provides background about disability accommodations and regulations governing these, with a specific look at how signed language interpreting accommodations are similar and dissimilar to other kinds of accommodations. In the second section, I offer a personal narrative of my experience as a Deaf academic who has been excluded from the interpreter selection process, highlighting some of the harmful consequences of such exclusion. In the subsequent two sections, I describe and analyze the process of choosing interpreter accommodations, starting with the process of requesting signed language interpreters and the institutionalization of this process, followed by an evaluation from the standpoint of the signing Deaf consumer. The penultimate section considers some objections to the proposal of involving more consumer choice in signed language accommodations. I conclude the paper with some concrete suggestions for a more Deaf-centered, inclusive process for choosing interpreter accommodations.
1. CHOOSING ACCOMODATIONS: CURBCUTS, CAPTIONING, AND INTERPRETING
At first glance, the action of requesting a signed language interpreter as an accommodation would seem to bear similarities to that of choosing a lawyer or primary care provider in health care. A key objective would be to identify someone possessing the right skills to fit your needs—if you, as a person of modest means, are in need of a lawyer to draft a last will and testament, you'll look for someone who possesses experience in family law. If you seek a physician to treat uterine leiomyomas, the best [End Page 268] approach would be to focus your search to locating a gynecologist over a cardiologist, all things considered. In the course of determining which professional to establish a relationship with, you would also make certain assumptions about the functions of licensure and gatekeeping—e.g. that practicing lawyers have satisfied a minimum standard of competence by passing the bar exam, and that board-certified physicians have established their competence to practice medicine. Sometimes your search may be indirectly constrained by economic or other factors; in looking for a dentist, you might be mindful that your dental insurance has a list of preferred providers who will bill at certain guaranteed rates of reimbursement. At other times, your domicile will govern how you make decisions about selecting the right professional for your needs—if your child is assigned to the school closest to you, you may have a choice of two sixth-grade teachers, and while both have satisfied the minimum requirements for state-issued teaching certificates, based on your understanding of your child's learning style, you may make a request to the principal asking for your child to be placed with a particular teacher.
Many accommodations for disability involve little room for choice on the part of the disabled person. Curb cuts, retrofitted elevators in historic buildings, televised closed captioning, and theatrical production audio description are accommodations made with the goal of serving large populations with variable needs. Specifications regarding the pitch of a ramp, the location of a curb cut, and the viewing options for accessible captioning are not determined by the individuals who use a particular accommodation at a specific location, but by groups (sometimes including people with disabilities, sometimes not) who consider the needs and constraints involved in determining regulations and features of accommodation.2 This includes the consideration of the wide range of people with different disabilities who may require a particular accommodation, as well as those with the same disability who require different accommodations in order to obtain access of a similar nature.
It is well known that communication accommodations for deaf and hard of hearing populations are not universal. For example, the accommodation of English–American Sign Language (ASL) interpretation will not suffice for all deaf and hard of hearing people since not all people in this population know ASL. Most of those who do not know ASL will instead choose written English accommodations such as closed captioning, transcripts, CART captioning, or (in some cases) voice recognition software (Baker 2016). Just as ASL is not accessible for every deaf or hard of hearing [End Page 269] individual, the aforementioned text-based accommodations are similarly inaccessible to some deaf and hard of hearing people (including some ASL speakers), including those with print disabilities or those who have limited literacy skills. At this point in time, sophisticated sign language recognition technology does not yet exist—the reasons for this are complex and varied (see Grieve-Smith 2016; Vogler and Goldenstein 2008).
Heightened public awareness of signed language interpreters during emergency briefings has contributed to the perception that signed language interpreting is a one-size-fits-all accommodation, similar to curb cuts or closed captioning. Those who have a more nuanced understanding of the signed language continuum in the U.S. may also be aware that interpreters can provide accommodations using ASL or a variant of signed English. ASL is a natural language with its own grammatical rules, words, and syntax, while signed English variations borrow and modify ASL words, arranging them in English word order. Signed English is often accompanied by simultaneous mouthing of the English words, though it need not be. ASL also incorporates mouth movements as part of the grammar of the language, but these should not be misunderstood as being identical to the interpreted spoken English words. A simple illustration of the ASL exclamation ACHIEVED! makes this point. With this sign each hand is shaped into a fist with the index fingers raised and pointing up. Both fingers start by resting on the lips, then each moves outward from the center point shaping an arc forward and away from the mouth, as the person mouths (but does not speak) the sound, 'pah', plosively.
It is also important to note that interpretation between signed ASL and spoken English is not just a bilingual process, but a bimodal process (Kannapell 1982). Given this bimodality of signed and spoken language, simultaneous interpreting is the norm for ASL–English. This differs from spoken language to spoken language interpretation, which is frequently done as consecutive interpreting (Russell 2005). The established practice of bimodal simultaneous interpreting generates a communication asymmetry that burdens the deaf participant in the interaction, and benefits the hearing participant. The (sighted) hearing participant can, by the fact of having access to the sensory inputs of hearing and vision, simultaneously and bimodally access the deaf person's delivery of signed content and the interpreter's delivery of spoken content. The uni-modality of the (sighted) deaf person's access to content during simultaneous ASL–English interpretation is disadvantageous. Even if the deaf person is an excellent speechreader, she is limited by the constraints of vision and [End Page 270] visual processing when she must watch two inputs by speechreading the hearing person's delivery of English content and the interpreter's delivery of ASL (Russell 2005).
This prompts questions that are beyond the scope of this paper, but are worth further analysis: what are the motivations for using simultaneous interpretation as the standard approach for ASL–English interpretation? Is there an implicit bias towards saving time that prioritizes the hearing person over the deaf person? Consider this in the historic context of ASL–English interpretation, in which the hearing people were largely professionals, and the deaf people laypersons seeking professional services.
Does the emphasis on simultaneous interpretation convey a message that accuracy, and perhaps the ability to double-check the message, are less important for deaf people than for the interpreter? Does the practice of simultaneous interpretation benefit interpreters, particularly less qualified ones, since signing Deaf people, many of whom are bilingual, though not necessarily skilled speechreaders, are unable to verify the message? Consider this given the backdrop of Deaf folklore of interpreters who take advantage of information gained during interpreting, acting on it to benefit their self-interest. These and other questions about the structure and practices of the institution of signed language interpretation bear further analysis.
Interpreting can be categorized as intersocial, taking place among two distinct linguistic communities—business, diplomatic, and military interpreting are subcategories of intersocial interpreting. Intrasocial interpreting occurs within a multilingual community. Examples of intrasocial interpreting include medical, legal, educational, and broadcast interpreting (Pöchhacker 2004). More recently, the term community interpreting is used as an umbrella term to describe intrasocial interpreting that includes such different contexts as interpreting a city town hall meeting, interpreting a funeral service, interpreting a high school reunion, or a sporting event. For each of these settings, an interpreter must possess extra-linguistic knowledge, including sufficient comprehension of the structure and context of the event to be interpreted. Some of these factors are background knowledge of the event norms and expectations, technical and colloquial lexica, the ability to comprehend and reproduce the register of speakers, and a variety of additional professional skills.
In most parts of the country, there are insufficient numbers of qualified signed language interpreters to meet the demand.3 Several factors contribute to this, including the legal mandate of the Americans with [End Page 271] Disabilities Act and other civil rights legislation requiring provision of communication accommodations. In the U.S. the right to access to signed language interpreters is primarily viewed as a disability accommodation and not a matter of language accommodation as with spoken language (Humphries et al. 2013). This difficulty of meeting this mandate is compounded by the small pool of native ASL–English speakers eligible to become interpreters. While the latter has been partially addressed by bringing second-language users of ASL into the profession via university Signed Language Interpreter Training Programs (ITPs), graduates of these programs usually only complete 2–3 years of language instruction, which is not sufficient for language skills for working as an interpreter in many settings, particularly in legal and medical settings where misunderstandings can lead to calamitous results. Even educational settings can be high stakes, particularly if the interpreter is a non-native speaker of ASL serving as the child's primary language model.
The impetus for this paper goes back to an academic bioethics society conference I attended over a decade ago.4 I was a newly hired lecturer in the Philosophy Department at Nameless University attending my first funded conference. I requested interpreters from the bioethics association, which turned over my request to the for-profit association management company responsible for organizing the conference. In contrast to my experiences at other academic conferences in my disciplines of philosophy and disability studies, I was not provided with much information about the interpreters' background qualifications. In fact, when I pushed for more detailed information, I did not receive responses to my requests.
The only information I was given prior to arrival at the annual meeting was confirmation that two interpreters had been booked for the conference, including an "educational interpreter," which I mistakenly assumed meant an interpreter with higher education experience. Upon arrival at the conference, I met my two interpreters. One of them had learned sign language from a book and "interpreted"—I use this term loosely—at her church every Sunday. There were no signing Deaf people who attended her church. The other was an interpreter and educational aide who worked with young deaf children (ages 4–6) and who was completely unqualified to interpret high-level academic registry interpreting in bioethics with its terminology from philosophy, law, and medicine. She acknowledged this herself shortly after arriving at the conference, telling me afterwards that [End Page 272] the request from the agency that booked her was for "an educational interpreter."
I later learned that the church interpreter had a personal connection to the for-profit association management company; and that both organizations (the bioethics society and the management organization) had saved an enormous amount of money by hiring these two women instead of certified interpreters qualified to do this work. (This act of hiring uncertified interpreters would violate current law in the state where the conference took place.) Yet, as a graduate student and junior untenured member of the discipline, I was reluctant to challenge the quality of my accommodations through official channels, such as the U.S. Department of Justice mechanism for filing ADA violations complaints, instead making the determination that it would be more prudent to try to effect change from within by educating various parties.
One consequence of not speaking out initially was that it perpetuated the belief among the bioethics society members who assumed that I did indeed have access, given the evidence of two women wearing professional attire following me around all day waving their arms in various patterns, thus looking like they were interpreting. And yet, by any standard of reasonable or effective accommodations, I did not have access. This practice of excluding the deaf person from participating in the interpreter accommodation process is the norm, not the exception. In the following sections, I offer some thoughts about this practice, the ethical issues involved, and the larger impact on deaf lives when interpreter accommodation choices are not available to us.
3. REQUESTING ACCOMMODATION
3.1 The Process of Making the Request5
What does the process of requesting the accommodation of a signed language interpreter look like? Details will vary, but this general shape of this process is fairly standard. First, the deaf person ascertains that there is a need for this accommodation—an interpreter may be requested for a variety of public events, such as a public performance of a play, attendance at a parent–teacher conference, divorce proceedings, or a medical appointment. Following this, the deaf person ascertains whether this event would fall under the aegis of legally mandated accommodations. In some cases, such as a private family wedding, or the public meeting of a local club with a very small budget, the event may be exempt. [End Page 273]
Once the eligibility for interpretation services has been determined, the deaf person initiates the request by contacting the organization, institution, or office to determine the point person for accommodations requests. Depending on the nature of the event and the organization, it is not unusual to learn at this point that no person has been designated as responsible for such arrangements. It is also not unusual (depending on the organization) for the organization to either deny that such accommodations are required by law, or to refuse to pay for them.6 The ADA is an unfunded mandate; entities that infrequently receive requests for interpreter services as a disability accommodation rarely have budgeted for such an expense. This behavior is not restricted to private entities—even public entities can display such responses. As an illustration, a few years ago I attended a federal agency sponsored conference on research integrity as an official representative of my university. (Federal agencies are required to provide disability accommodation under the ADA.) It took several emails, including a sternly worded one that threatened legal action, before the federal agency was willing to provide and pay for signed language interpreters.
Here, the deaf person is tasked with the additional hidden labor of disability, which not only includes advocacy for one's rights to access and determining the appropriate fit of interpreters to the assignment, but managing the emotional toll of discrimination and oppression. In her paper on hidden labor and disability, Jackie Leach Scully calls attention to the emotional management of others done by people with disabilities (2010). In acknowledging this claim, which I strongly endorse, I extend her work by situating it in potentially adversarial situations and those of long duration, such as the arc of accommodations in a particular professional career, especially for those in small fields and with high visibility (Burke 2016).
Once the identity of the person responsible for making accommodations arrangements is known, the deaf person then directs a formal request, preferably in written form, regarding her need for a disability accommodation of a signed language interpreter. After the process of looking for an interpreter is initiated (usually by contracting with an interpreter services agency), the person responsible for making the arrangements is contacted by the agency regarding more details about the deaf person's language background. In the best case scenarios, the individual responsible for making interpreter arrangements may contact the deaf person with some questions—usually these have to do with the language requested. Does the deaf person prefer ASL or Signed English? Typically, the following information is provided to the interpreting agency [End Page 274] when the request is made. Some of this is information that the initiating organization already has, but the selection of what the organization conveys to the agency is often driven by agency intake forms. The deaf person's name may or may not be given, the deaf person's preference for ASL or signed English is almost always conveyed, as well as the location of the appointment, the length of the appointment, and (for billing purposes) the contact information for the organization making the arrangements. Costs are negotiated (almost never with the deaf person's input), a contract for delivery of services is signed, and with this, the accommodation is arranged. The deaf person may or may not be notified that interpreting services have been obtained, and sometimes, if the responsibility for interpreting services has shifted (as it may do once the need for purchasing authorization is known), the deaf person may have to expend significant energy getting this information. This puts the deaf person in a bind since she has to make a determination of whether to show up for something that may or may not be accessible, expending time and energy into an activity that has already assumed the status of sunken costs.
When a person unfamiliar with the signing Deaf community is the primary point of contact for interpreter accommodations, it is rare that the deaf person is given a choice about interpreter preference. Current practice is for the agency and the person responsible for making the arrangement to make all of the choices about what interpreter is booked for the job. In the best situations, the point person at the organization providing the accommodation will reach out to the deaf consumer to ask for input. In many cases, the person managing the request will guess. Sometimes the agency will reach out to the deaf person, but often the agency may not have the deaf person's name, and know only that a deaf person has requested an interpreter. To say the least, this is a very consumerist model, with the consumer being the payor of services and not the primary beneficiary. While it should be clear that both parties in an interpreted interaction receive benefit, the nature and structure of how disability accommodation is typically framed has contributed to the popular conception that the accommodation is for the disabled individual, allowing the disabled person to participate in the goods of mainstream society. Given this, the perception of uncoupling of payment from beneficiary reinforces the notion that choices about accommodations ought to reside with the payor, that is, the non-signing responsible organization or private party, and not the deaf person, who bears no financial responsibility. [End Page 275]
One common question at this point is to ask whether kinds of disability labor related to requesting interpreter accommodations can be allocated to others. Some of this labor could be redistributed by institutional changes within signed language interpreting agencies, such as changing information required by interpreting agencies and establishing a policy of directly notifying deaf consumers about the status of their requests for accommodations. Labor involving the unique knowledge of what is needed to select a good interpreting fit for the deaf individual in that particular context, because of the nature and depth of this knowledge entailing not only content expertise, but knowledge of pre-existing relationships, is not likely to be redistributed, although it can be acknowledged as a labor contribution, thus no longer being hidden labor7 or dismissed.
3.2 Requests for Service: The Signed Language Interpreting Profession
Outsiders to the signing Deaf community frequently make incorrect assumptions about signed language interpretation due to a lack of knowledge about the particular historic and cultural factors that have affected the use of ASL in the signing Deaf community and the development of the profession of signed language interpreting. These mistaken assumptions include the following: the view that signed language interpretation is a uniformly regulated profession, similar to law or education, requiring assessment and certification of professional competency before one is legally permitted to practice; that those availing themselves of professional services operate in an environment where the relationships of the signed language interpreter to the signing Deaf community bear relevant similarities to other kinds of professional providers, including a sufficient critical mass to confer degrees of separation and anonymity common to other professional–layperson relationships; and that the sole factor in obtaining services from a signed language interpreter is language and interpretation skill competency.
Why might there be such a difference in layperson and consumer views regarding the assumption of who ought to have final authority, choice, or veto power regarding signed language interpreter accommodation? One way to think about this is as highlighting a difference of views about the primary nature and function of signed language interpretation accommodations. While a number of models have been proposed in the signed language interpreting studies regarding the best way to conceive of the signed language interpreted interaction, e.g. helper, machine, conduit, expansionist, demand–control (Shaffer 2013), the lay person charged [End Page 276] with contracting for interpreter accommodations is not familiar with these models,8 and is more likely to possess a folk view of a fee-for-service contractual model. This thin description of signed language interpretation, while not incorrect on my view, is too narrow, and does not adequately reflect the numerous factors that affect interpreted interactions from the perspective of signing Deaf consumers. I will discuss this further in section 4.
As professions go, the profession of signed language interpreting is relatively new. The Registry of Interpreters for the Deaf (RID), the professional association for signed language interpreters, celebrated its 50th anniversary in 2015 (RID 2016a). The organization has a code of professional conduct (this has evolved considerably over the years, starting as a code of ethics), plus minimum standards for entry that include completion of a bachelor's degree (this need not be in interpretation), plus passing two exams—a written exam and a practical skills-based exam that involves ASL–English interpretation and vice versa (RID 2016b). Graduates of interpreter training programs (ITPs) usually wait for a few years after graduation to take the practical exam, acquiring experience through community interpreting, ideally under a mentoring program, but not always.9 States that have licensure standards for signed language interpreting typically provide a window of a few years to pass interpreter competency exams.
However, the existence of a professional organization can only do so much. Professional organizations set standards and aspirational goals for professional conduct of their members, but not all professional practitioners are members of professional societies, and not all practitioners agree to abide by these standards of conduct, sometimes for principled reasons, sometimes not. State licensure provides a legal mechanism for regulating the quality and provision of signed language interpretation. In the United States today, vastly different standards and requirements address quality control of signed language interpretation. Some states have no licensure laws at all; some states have regulations for only certain kinds of interpreting (often educational and legal); and still others have very detailed governance of all aspects of signed language interpretation. The presence of licensure statutes is not dependent on the number of Deaf people living in the community—the District of Columbia, while not a state, is a city with an extremely large percentage of deaf people due to the presence of Gallaudet University and the number of deaf employees working for the federal government, which offers incentives for hiring disabled employees. Yet, Washington DC has no licensure requirements for signed language interpreters (Project BurnSat 2016). [End Page 277]
In such settings, anyone can hang up a shingle and call herself an interpreter. The absence of regulation makes it difficult to police charlatans; the conditions of who has a voice in the choice of hiring signed language interpreters (e.g. not signing Deaf people or others with knowledge of ASL) make it fertile pickings for those engaging in fraudulent behavior (Burke 2013a). This fraud is easy to perpetuate since the people who are harmed the most (signing Deaf people) have little standing given the small numbers of deaf people in comparison to the general population and the current structure of obtaining interpreter accommodations that places most decisions in the hands of the entity payer providing accessibility. As a reminder, in the vast majority of cases where signed language interpretation is an infrequently requested accommodation, the people charged with the responsibility of obtaining the accommodations of signed language interpretation to keep this entity from violating the mandate of the ADA usually do not have linguistic competency in ASL. As a practical matter, the hiring staff person simply accepts an interpreter's word as evidence of competency. If they witness the interpreter signing to another person, the presumption of competency is reinforced. Language competency is rarely conceived as a matter of language registry; returning to the theme of common misconceptions about signed language interpreting, language competency is not a proxy for interpreting competency, but the conflation of these is quite frequent. In sum, regardless of how well regulated the signed language interpreting profession is, signing Deaf people have almost no economic power to sway market decisions, and given current practices excluding Deaf people from the contractual end of interpreter accommodation choice, have little recourse when it comes to choosing who gets a window into our lives.
This uneven state of affairs allowing interpreters with subpar skills or questionable professional ethics to operate relatively unscathed by signing Deaf people's approbation has recently been challenged. The use of social media networks, coupled with advances in the ease and quality of videotaping through personal devices such as cell phones, have contributed to a groundswell of Deaf advocacy testimony about signed language interpreting. Deaf people are taking matters into their own hands, including engaging in vigilante action by using cell phones to film interpreters to capture and display to the community examples of a lack of language competency or violations of the RID Code of Professional Conduct.10 Many signing Deaf people also use the power of narrative through ASL vlogs to recount discrimination related to the acquisition and provision [End Page 278] of signed language interpreters. This approach is particularly effective in a cultural community where storytelling is a high form of art—serving the function of cultural bonding through shared experience as well as aesthetic appreciation. Many of these narratives can be further categorized in the subgenre of obtaining signed language interpreter accommodations in medical settings, especially with the recent proliferation of video relay interpreting (VRI) services. Finally, the advent of signed language interpreting conferences like Street Leverage has provided a venue for prominent signing Deaf people to lecture about interpreting, accessibility, rights, and advocacy (Street Leverage).
4. THE ABSENCE OF CHOICE
In the previous section I suggested that part of the problem regarding interpreter choice rested with different conceptions about the nature and function of signed language interpreting, offering a description of common folk view of a layperson having limited experience with the signing Deaf community that rests on a fee-for-service contractual model of interpreting services. This thin account of interpreting services, while addressing one aspect of signed language interpreting services, disregards the importance of such factors as interpreter fit-to-the assignment (Burke 2013a), prioritizing language and skill competency above all else.
A thicker, Deaf-centric view of the process of interpreter selection does not discard the importance of linguistic and interpretation competence, but it recognizes that numerous factors contribute to the interpreted interaction. Some of these factors include the nature of the interpreted interaction and the domain where it occurs. Is it medical? A private consultation with a professional about sensitive material? Are other people in the signing Deaf community involved or potentially involved? Are there signed language interpreters who would be problematic because of prior history with the Deaf consumer because of relationships that the interpreter has in the signing Deaf community? Does the signed language interpreter already know a lot about the Deaf person's life? Is the Deaf person uncomfortable with letting the signed language interpreter into this aspect of her life? Are there political repercussions from using a particular signed language interpreter in a public setting? Does the signed language interpreter have a (verifiable) reputation in the Deaf community of not protecting confidential information or the Deaf consumer's privacy? Does the signed language interpreter know the technical information required? Does the signed language interpreter's socioeconomic status and [End Page 279] background fit the interpreting assignment? What does the signed language interpreter's spoken language register sound like? Does it appropriately reflect the social standing and register of the Deaf consumer? Does the interpreter have a (verifiable) reputation for good teamwork behaviors with other interpreters? For professional practices? Does the interpreter have a (verifiable) reputation for paternalism towards Deaf people? Does the interpreter have a longstanding connection or working relationship with the Deaf person?
The interests of the signing Deaf person making the interpreter request fit into a complex web of the Deaf person's life. Choosing an interpreter involves thinking about social consequences as well as language access. The wrong interpreter choice can have significant life impact; consider the potential outcomes for Deaf children in educational settings who need a language model, Deaf laypersons seeking professional advice when buying a home, and Deaf professionals trying to establish themselves as having equal stature to their Hearing colleagues.
Given that the current default position is that interpreters are just assigned to Deaf people, and not chosen, why should those responsible for arranging interpreter accommodations (from interpreting agency schedulers to point people at the entity providing access) care about this, especially if the interpreters have the language and interpretation skills necessary to do the job? One way to think about this is to consider the larger social obligation of "life, liberty, and the pursuit of happiness" vis a vis deaf lives and human flourishing in the context of said deaf lives. This section will sketch out responses to two questions: how might one start to think about flourishing deaf lives? What roles might concepts of privacy and autonomy play in such lives?
4.1 Thinking about Flourishing Deaf Lives
The question of what makes up a flourishing life is obviously much larger than the scope of this paper. I wish to direct attention to a singular aspect of a flourishing deaf life that is often overlooked in more generalized discussions about human flourishing: access to language. For the purposes of my analysis here, I'll stipulate that having access to language is a key component (possibly a necessary component) to a flourishing deaf life, all things being equal. I say possibly, because I think that people who cannot acquire language (including deaf people) can have flourishing lives without language. I'm also going to stipulate here for the purposes of my analysis that I'm only going to consider those deaf people who [End Page 280] have acquired language, and who have sufficient cognitive capacity to work with signed language interpreters. What follows focuses on this subset of the population of deaf and hard of hearing people. Although this discussion only addresses signing deaf and hard of hearing people, these considerations about a flourishing deaf life should not be taken to apply only to this population.
In order to develop an account of deaf and hard of hearing flourishing, some background terminology is helpful. In Deaf and disability studies historically a distinction has been made between the sociocultural linguistic group of signing Deaf people with the use of upper case 'Deaf', reserving the lower case usage of 'deaf' for auditory status.11 Elsewhere I have argued that the convention of D/deaf usage should be extended to H/hearing usage, reserving the lower case 'hearing' for species-typical auditory status, and upper case Hearing for the sociocultural linguistic community of Hearing people (Burke 2014). In the section that follows, I will build on this distinction.
For the most part, Hearing people experience lives in which access to language is a given. That is, language is acquired without special effort through exposure in one's language community. Hearing people do not regard language as a special or limited resource, but part of the fabric of one's daily life, all things being equal—discussions about language justice focus on rights to minority and endangered language usage, not the right to language qua language. While it is correct that D/deaf children who grow up in families with a signed language as the primary language share with H/hearing children a similar phenomenon of direct and unmediated language acquisition in the home, the deaf child has a markedly different experience once she enters the community of spoken language users. This experience may range from virtually no access to significant, but still partial, access. Except for situations in which a biomechanical variation is adjusted to species-typical variation, even with the most effective biomedical intervention (e.g. cochlear implant, auditory brainstem implant, hearing aids), the deaf child is likely to experience partial access to language under some conditions. The experience of having partial access to language not only shapes one's relations with other people, but it may also affect one's confidence in one's epistemic judgment. Imagine the effects of a lifetime of never quite being sure that you have heard and understood correctly, and how this might play out for deaf children in a non-native signing environment as that child develops (Burke 2011; Burke 2014; Humphries 2016; Kushalnagar et al. 2010). Compound this with typical Hearing [End Page 281] assumptions of what it is like to be Deaf, with the emphasis on the medical model of what one cannot hear instead of a social account of what one is denied access to, and the experience of partial access to language can be readily tied to notions of epistemic injustice such as those articulated by Miranda Fricker (2007).
4.2 Guests in our Lives
To be a deaf person living in a mainstream hearing society today is to have an unprecedented amount of access to spoken language communication. For the most part, this access is provided via signed language interpreting and Computer-Aided Real-Time (CART) captioning.12 Even with laws mandating accessibility, there are still large gaps of inaccessible content (think of radio, or uncaptioned internet videos, or spoken language events that do not have signed language interpreters present), but this is an era where deaf and hard of hearing people are promised reasonable accommodation for communication access.
As many middle-aged and older Deaf people do, I divide my life into two parts: pre-ADA, where I attended social and academic functions, where I did not have full access to the spoken content, and could not understand much of what was said, and post-ADA, where I could request accommodations (be it interpreters or CART captioning) and could comprehend what was spoken. What I hadn't anticipated was that my elation of having access to potentially everything spoken would come with a cost. This is the cost of having uninvited guests with front row seats to your life, often during those pivotal moments: weddings, commencement, dissertation defense celebrations, hospitalizations, childbirth, divorce proceedings, IEP meetings, parent-teacher conferences, job performance evaluations, and more. No matter how good the interpreter, no matter how impeccable her ethics, no matter how closemouthed and hands down she is, this is a person, who, but for the fact of one's status as a deaf person in a hearing society, would not be present. This is a hard truth. Interpreters have jobs that in many ways open up the possibility of flourishing Deaf lives, but they are also, in many ways, equivalent to uninvited (yet not necessarily unwanted!) guests in our personal lives—an additional person to accommodate, whose presence fundamentally alters one's interactions with others. [End Page 282]
4.3 Concepts of Autonomy and Privacy in Flourishing Deaf Lives?
Given the reality constraint of having strangers show up, uninvited, into one's life at various times that may be significant life moments, how ought a deaf person go about fashioning a flourishing life? Here I borrow a concept from the bioethicist Adrienne Asch, who, in her writing about abortion, notes the any/particular distinction. Sometimes it is that you don't want any interpreter present (maybe that's all the time, I don't know); sometimes you just don't want this particular interpreter present. In thinking about the role of autonomy in a flourishing life, this is important. Since the aim of this paper is to sketch out the landscape of this topic space rather than give a detailed analysis, this section and the following one will only highlight some issues for consideration.
By 'autonomy', I simply mean the broad notion of having control of one's life in a normative sense. Consider this—to make autonomous decisions involves having sufficient access to information. For deaf people, often access to the information one needs to have in order to make an informed decision is dependent on communication access. This access often necessitates the use of an interpreter, which presents something of a conundrum, since the signed language interpreter is privy to all kinds of information that she must make decisions about in an interpreted interaction. This information is not limited to spoken language content, but includes environmental noise, cultural knowledge shared by Hearing people that may not be known by the Deaf consumer and vice versa, and decisions about what kind of information to include and omit given her understanding of the Deaf consumer's objectives, which may be conveyed explictly or implicitly.
Some of the richest discussions regarding autonomy and disability revolve around intellectual disability. Leslie Francis identifies several different, but related attributes of autonomy connected to different kinds of capacities that she then assesses with respect to people with intellectual disabilities. One of the points that Francis makes is that the class of people with intellectual disabilities is highly variable, and that different kinds of capacities (or lack thereof) are relevant in different ways to the family of autonomy attributes (2009). I suspect that this will also hold for the class of signing deaf and hard of hearing people who work with interpreters. Some of these differences include knowledge and ability of signed and the dominant spoken (written) language, differences in residual hearing, [End Page 283] differences in educational backgrounds (ranging from oral with no signing to full immersion in a signed language), as well as other bodily differences related to syndromic deafness, including low vision and blindness. The dyadic aspect of the deaf consumer-interpreter relationship entails that interpreter skills and capacities also contribute to judgments about autonomy for deaf consumers.
Tenet Four of the RID-NAD Code of Professional Conduct, "Interpreters demonstrate respect for consumers" suggests the role that autonomy might play in the construction of a flourishing deaf life might be akin to how autonomy is understood in bioethics (RID 2005). The accompanying Guiding Principle asserts: "Interpreters are expected to honor consumer preferences in selection of interpreters and interpreting dynamics, while recognizing the realities of qualifications, availability, and situation." This emphasis on decision-making is also reinforced with the assertion that "members of the deaf community have the right to informed choice" in the context of the interpreted interaction (RID 2005).
Brenda Nicodemus and I have written elsewhere about the potential for relational autonomy with regard to working out the complexities of interpreter-consumer decision-making (Burke and Nicodemus 2013). One of the difficulties with this approach is considering the different contexts and values of the role of autonomy for the deaf consumer, whose access to information that will support various kinds of autonomous actions (e.g. valuing, practical reason, agency and planning) depends, at least in part, on the information produced and received by the interpreter. Analyses of relational autonomy involving people with intellectual disabilities and their caregivers or others to whom they stand in relation turn on aspects of psychological abilities, where an account of relational autonomy for interpreters and consumers would need to be developed with regard to linguistic abilities, which again, can be variable.
Finally, take an interaction between two people that occurs in a first language for both people. Many facts obtain, but one key element is that the people producing the language content are the people with knowledge of themselves—knowledge of their aims for the conversation, their background knowledge, their language register, their ability to pick up on nonverbal cues, and their ability to determine when to speak, when to listen, and what to follow up on. Once an interpreter is added to this communication dyad, the interaction is altered. Even with significant preparation, the interpreter cannot assess and make decisions about conversational strategies in an identical way that an individual would for [End Page 284] herself. This is the nature of interpreting. The addition of the interpreter to the communication dyad impacts, whether slightly or in large degree, the ability of the deaf person to be autonomous.
Suppose that the deaf person had the ability to choose his interpreter—how might this contribute to a more flourishing life? One way that choosing an interpreter could contribute to this is the deaf person's knowledge of his plan (both the plan for the interpreted interaction and the larger plan that this interaction contributes to) and whether the interpreter's attributes and skills would hamper or augment the deaf person's aims. While of course no two interpreters (or individuals, for that matter) will make identical decisions to what the deaf person desires in all cases, the difference here is one of degree and familiarity. Interpreting is as much an art as it is a practice; interpreters and consumers who have worked together in a particular context not only develop shared preferences for linguistic communication, but they develop a relationship that not only potentially builds trust but also mutual recognition.
In her account of justice for people with cognitive disabilities, Kacey Brooke Warren (2015) argues that mutual recognition, or "the affirmation of the dignity of a human being" is central. Warren's analysis draws from Axel Honneth's conception of justice, which identifies three differentiated forms of recognition: need, equality, and achievement (2015, 142–43).13 This seems a promising approach for considering autonomy in the context of a flourishing deaf life, for it not only offers an account of interpersonal mutual recognition (which could be applied to the interpreter-consumer triad), but can also be used to develop an account of justice for social institutions, such as interpreting agencies and the entities that contract with them.
In the age of social media, it might be argued that concerns about privacy are anachronistic, and perhaps that just as Deaf people have often been early adopters of text-based technology, they have been groundbreakers with regard to adjusting conceptions of privacy.
Even in a community that relies on text to communicate with others who do not know a signed language, there are still assumptions of key differences between what a person chooses to post on social media, what one opts to preserve as part of a text-based relay conversation, and what a person writes in a note that is intended for one person. [End Page 285]
In the context of our society, there are special relationships that carry with them promises of confidentiality to safeguard privacy. Lawyers, physicians, teachers, and interpreters are bound to confidentiality, yet signed language interpreters occupy a unique position in Deaf lives. For example, in most cases, I can be assured that when I go to my lawyer, my physician will not be present. And if I go to a parent–teacher conference, it is not likely that my religious leader will make an appearance. These professionals, who are bound to confidentiality within the constraints of their profession, operate within particular domains of public practice: education, law, medicine, or religion.
Interpreters, on the other hand, can appear anywhere. The unpredictability of this is unsettling. Unlike an appointment with your primary care physician or your lawyer or your child's teacher, when you know that you are meeting with a particular person, the identity of the interpreter may be unknown to you until you appear at the event. This is not always the case, but it is a convention of how the profession has been practiced.
Consider the following: you have an important meeting with your supervisor today, two months later you are scheduled for surgery, your sister is getting married the week before that, and in the midst of this, the principal of your child's school has called you to an emergency meeting to discuss a "situation". It is possible that you might be assigned the same interpreter for all of these events and with little to no advance notice of this. Only one of these, your sister's wedding, is likely to be an instance where you have significant input over who will interpret. Medical practices and school districts may have contracts with interpreting agencies that constrain interpreter choices, as with government agencies or business corporations. So the expectation of privacy, which in the case of other professionals is separate by the domains of expertise, becomes amorphous when it comes to interpreter intrusion in a Deaf person's life.
Let me elaborate. While it may be the case that other kinds of professionals, such as a family physician, or perhaps a social worker, may have access to private information in other domains, a key difference is the element of choice in both disclosure to the professional and the choice of which professional to work with. For example, a patient might choose to reveal information to his physician that he is feeling distressed about his inability to get the right kind of support for his child's learning disability, a bit of personal information has some bearing on the professional's domain. Even if the family physician treats several members of the same family, and [End Page 286] obtains information from a variety of sources, the element of some control over what kind of information is disclosed remains. Contrast this with a signed language interpreter who interprets your child's IEP meeting and the next day appears at your annual work performance review. The family physician could be told about the contours of your concerns (i.e. difficulties at work and concerns about your child's education) but the level of detail that a signed language interpreter working to provide communication access acquires in these settings is considerably more invasive.
In discussions about privacy with regard to signed language interpreting ethics, including the example above, the dominant assumption is that the interpreter's corresponding responsibilities of confidentiality refer to control of information. For example, in Tenet 1, Confidentiality of the Registry of Interpreters for the Deaf Code of Professional Conduct, the Illustrative Behaviors for Interpreters refers to "sharing assignment-related information only a confidential and as-needed basis" (1.1), "manage data, records … and other consumer-specific information in a manner consistent with maintaining consumer confidentiality" (1.2) and "Inform consumers when federal or state mandates require disclosure of confidential information" (1.3)(RID 2005).
There are many kinds of privacy and correlative obligations on professionals. Control of information is an important aspect of the signed language interpreter's relationship with her consumers, yet it is not the only aspect. A related and important account of a sense of privacy is given by James Rachels regarding "our ability to create and maintain different kinds of social relationships with people" (1975, 323–33). (By social relationships Rachels just means the ways in which two people stand in relation to one another as friends or spouses or colleagues.) Communities of signed language users are small; signing Deaf communities even smaller. It is not unusual for signing Deaf people to stand in multiple roles to signed language interpreters—i.e. as colleagues, as religious congregants, as friends, as volunteers serving nonprofit organizations serving the Deaf community, or as professionals. If, as Rachels argues, creation and maintenance of social relationships is an aspect of privacy, what might a sense of privacy look like in these everyday contexts for a Deaf person who works with interpreters?
Rachels points out that the control of information aspect of privacy is primarily aimed at protecting an individual from embarrassment or harm, but can also extend to aspects of one's life that are "nobody else's business," such as one's sexual behavior (1975, 323–33). He then extends [End Page 287] this sense of 'nobody's business' to the construction of relationships. Social relationships have particular patterns of behavior, with different patterns of behavior associated with the different kinds of relationships (1975, 326).14 For example, in constructing two different kinds of relationship in her workplace, a professor might be reticent to disclose personal information to her undergraduate students about her standing as a mother to young children, and yet freely swap stories about her children's escapades with her fellow faculty members.
What makes something 'someone's business' and 'nobody else's business' in the context of an interpreting relationship is tricky. A signed language interpreter has a role of providing communication access; doing this inherently requires access to the content of what is being communicated; this can encompass a broad sense of 'knowing someone's business' for the interpreter. Deaf consumers and interpreters have conceptions of their roles, the behaviors associated with their roles, and what information about themselves it is appropriate to reveal in this context. There is an asymmetry in the kind of information provided during the construction of this relationship, with less information revealed by the interpreter.
The Deaf consumer reveals more information not only during the course of the interpreted interaction, but also during the initial conversation with the interpreter, in which each assesses the other's language patterns and skills. Some reciprocity of personal information exchange may take place, but it is usually confined to the interpreter's role, such as how she acquired the language and where she hails from—each bits of information that will assist the Deaf consumer in crafting content in a way that is readily understood, perhaps by eschewing a regional dialect or shifting to a signed English register. A particular tension for the Deaf consumer arises when information that is 'nobody's business' in a given relationship must be provided in order for the interpreter to do her job. This information does not stand in isolation for that one interpreted interaction, but also can be tied by the interpreter to all of the other contexts in which she has interpreted for that Deaf person in the past, and into the future, including seemingly innocuous social interactions at popular Deaf community events. Even if the interpreter does not divulge any of the information that she has acquired during the course of her work, the Deaf person may still be harmed because of the impact on her ability to create and maintain certain kinds of social relationships, particularly those imposed on the Deaf person without soliciting their input. [End Page 288]
There is one other aspect of the Deaf consumer's relationship to signed language interpreters. Given the relative newness of the signed language interpreting profession as a social institution, one might think that this is partly a matter of unsettled behaviors and conceptions of information sharing. As Rachels points out, it takes time to determine one's conceptions of behavior in new kinds of social relationships. Although interpreting is not a new profession, the features of the signing Deaf community differ in important ways. In most cases of Hearing families, different language speakers do not hire an interpreter to assist with communication access, instead relying on bilingual family members. Given that over ninety percent of Deaf people have Hearing parents and families, the Deaf person's access to family events where no one signs and only English is spoken means hiring a signed language interpreter. In this context, family members must rethink their conceptions of what kind of behaviors and information sharing are appropriate for incorporating a nonfamily member into a family setting, which also is likely to affect not only their relationship with the signed language interpreter, but their relationships with one another.
When one lacks control over who gets to appear in one's life during these critical moments, how might this impact one's ability to flourish? Note here that this example does not refer to any breach of confidentiality, only of the fact that there is a person in your life who has access to many different aspects of your life, and you, as a Deaf person, lack control of this.
Even if that interpreter never discloses your private business, the knowledge that this person is out there damages your sense of privacy. The fragments of your life that are typically separated and private by dint of that separation become blurred for those of us who work with interpreters.
One solution to the problem of interpreters appearing in several domains of a Deaf person's life is to impose a practice of providing more control to the Deaf person with regard to which domains of their lives particular interpreters can have access to. One interpreter might interpret only in medical settings, another in educational settings, and yet another at the Deaf person's mosque. In practice, this could work in locations with very large Deaf populations, such as Washington D.C., but it overlooks the small size and tightly networked signing Deaf communities elsewhere, as well as the matter of specialized subcommunities. For example, Deaf academics work with interpreters with similar knowledge and educational training in higher education settings. Interpreters with such an intellectual bent are more likely to appear at Deaf community events that will draw deaf academics, such as signed public lectures or book festivals, which [End Page 289] necessitates a different kind of social role, concomitant with different conceptions of behaviors and information sharing. As part of their professional responsibility, interpreters are expected to maintain and update their language skills through interaction with the signing Deaf community.
5. CHOOSING INTERPRETERS
I assert that institutionalizing a practice that ensures that deaf people have the ability to participate in the choice of one's signed language interpreters contributes to a conception of a flourishing deaf life. This can be cashed out in terms of having the ability to better control who has access to one's private information, of being viewed as an active agent (rather than a passive recipient of "disability services"), and of having the autonomy and expertise to sort through a myriad of details to determine who is best suited for an assignment, not just in terms of language skill or content knowledge, but also with regard to soft skills and fit to the parties involved.
This implies another question: is the practice of leaving deaf people out of the process of interpreter selection ableist or audist?15 I suspect that if anything, this is likely to be a matter of institutionalized audism, rather than a conscious decision to shut deaf people out of a process that has significant impact on our lives. Additionally, ableist and audist assumptions permeate mainstream (able-bodied, hearing) society, contributing to the complacent acceptance and perpetuation of this particular practice. One significant concern, in addition to questions of agency and autonomy, is the lack of qualifications, including sufficient knowledge of the field and practice of signed language interpretation possessed by people who bear the responsibility of obtaining signed language interpreters. For example, signed language interpreting quality is highly variable, but deaf peoples' testimony about this is frequently disregarded.16
6. OBJECTIONS AND CONCERNS
Any proposal that challenges the status quo is likely to be met with objections. In this section, I briefly articulate and respond to three of the most common objections raised by this suggestion: the power of the purse-strings objection, the capability objection, and the preference objection. [End Page 290]
6.1 Power of the Purse-Strings Objection
The power of the purse-strings objection claims that the entity paying for the interpreters ought to have the final say, given that it is their pocketbook at stake. Deaf people have no incentive to keep costs down since they are not the ones paying for the service.
This, however, is an artifact of the way that the ADA is structured as an unfunded mandate.17 In the U.S., Deaf people are unique in the disability community of having ongoing costs associated with our accommodations. Other ongoing accommodations such as personal attendants are often covered through existing funding structures such as vocational rehabilitation or health insurance. In some countries a different model prevails: deaf people are given a set amount of money for interpreting expenses for the year, and they have the freedom to allocate these funds and arrange for their own interpreters as they see fit.
6.2 The Capability Objection
A common observation is to note that not all deaf people are capable of assessing whether an interpreter is qualified, or the standards used by the deaf person making this determination do not match those of the interpreting profession. This mismatch between the norms of the interpreting profession and the norms of the signing Deaf community is worth further exploration. I have argued elsewhere that the code of ethics for signed language interpreters ought to consider not only professional norms and standards, but incorporate the norms and standards of the signing deaf community when possible, thus addressing some of the asymmetry of a profession that possesses far greater numbers of practitioners who are primarily members of Hearing cultural community than Deaf, and offering an explicit look at the cultural mores of the nondominant community that the signed language interpreting profession serves. Another proposed response to this is to consider a graded scale, where highly educated and sophisticated deaf people are granted the ability to have influence when selecting one's interpreters, but other deaf people (grassroots community members) should not be given this option. Yet this seems to at least invite the possibility of a presumption of audism and classism favoring Deaf community members who are more adept at functioning within Hearing cultural norms; it would be reasonable to be wary of such a solution. [End Page 291]
6.3 The Preference Objection
A third challenge to leaving the selection of interpreters to deaf people is the charge that this state of affairs might result in favoritism, where deaf people give preference to friends, thereby abusing the system. This is unfair to other interpreters who may be more qualified on some metric. Setting aside the question of whether the current system advantages certain kinds of interpreters, which is an open question, the concern about fairness, while worth exploring, overlooks another explanation about preference.
A phenomenon that occurs among Deaf people and signed language interpreters that does not get discussed much in the interpreting ethics literature is the nature of friendships between Deaf people and signed language interpreters (both hearing and deaf). Close friendships between deaf people and interpreters do exist and there are examples of this all over the signing Deaf community. Yet it is frequently avoided as a topic of ethical inquiry, and often dismissed with the imperative that one should not interpret for friends or colleagues or family members. I'll set aside the case of family members, since this is a more complicated issue, but would like to pick up on the case of requesting friends to interpret.
The default assumption is that friends cannot be neutral or impartial, and as such, should not be interpreting. But is this always true? Sometimes Deaf people want that trusted friend who is also an interpreter at our side. Is it ethically problematic to make such a request—particularly if you have negotiated trust and boundaries for years in your roles as friends and in professional capacities? I am not convinced that the default position should be to dissuade Deaf people from asserting this preference, in part because of worries about paternalist assumptions. If two parties are thoughtful and deliberate, it is not clear to me why this relationship could not be negotiated as occurs in other professional relationships that involve multiple roles.
7. POSSIBLE SOLUTIONS
The challenge of writing a research agenda paper in which one sets out the space for inquiry in an applied ethics context is that at some point, readers—particularly non-academic readers—look for practical solutions. Imagine a world in which deaf people were involved in the selection of their interpreters from the inception of the need to request this accommodation. What might this look like in practice? I conclude with some thoughts about some possible features of a radically revised approach to interpreter selection centering Deaf consumers of these services. [End Page 292]
First, ensuring that the Deaf person receives information about the interpreting assignment and gets the power of veto may provide more autonomy in some contexts. To some extent, this occurs in some small and particular communities, such as local community agencies that develop a portfolio for their Deaf consumers over time. The challenge is establishing norms for communication between the Deaf person requesting interpreting services, the agency, and the entity paying for the interpreting accommodations. Interpreters and interpreting agencies can take the lead on establishing and normalizing such practices, but should approach this as a joint effort that includes members of the Deaf community.
Second, creating a context in which a Deaf person has the power to choose interpreters herself. This would include direct input in determining which interpreters one works with for a particular interaction, perhaps even having the ability to make the arrangements without using an agency. This is of course made much more difficult with a third-party payor system, which may need to be revisited as a delivery of service model. One live, though limited, alternative is the designated interpreter model, where a Deaf person has one or possibly two interpreters assigned and designated because of their particular expertise and skill. This model comes with a caveat, which is that when a Deaf person works with one interpreter, that interpreter has access to a lot of information, and can also be viewed by others (especially over time) as a helper to the Deaf person, putting the interpreter in situations that may uncut the Deaf person's autonomy. Establishing a practice where the Deaf person negotiates directly with the entity responsible for obtaining interpreters (expertise versus expense), following the recent EEOC determination of "effective accommodations" is one possible framing for this model.
The suggestions above reflect only an initial attempt to question the assumptions of interpreter accommodation practices, and should be viewed as a starting point for conversation. In claiming disability rights as a civil rights issue, one of the challenges is being able to identify assumptions within current accommodations practices that may be ableist. A call for transparency and involvement of the Deaf person in the process of interpreter accommodations is a good first step to examining the current default position, which is excludes Deaf people from this process.
In conclusion, I hope this example of interpreter selection and interpreter choice has prompted some reflection on the more general need to rethink the ways that the complete process regarding the provision of an accommodation might serve to marginalize disabled people as it aims to [End Page 293] include us. It is simply unconscionable that the Deaf person, the person who is most likely to be affected by this decision, repeatedly encounters a process that undercuts her agency, autonomy, and privacy regarding her access to language—perhaps the ultimate constraint on her pursuit of a flourishing Deaf life.
Teresa Blankmeyer Burke, PhD is Associate Professor of Philosophy at Gallaudet University, a bilingual American Sign Language-English liberal arts university serving deaf, hard of hearing and hearing students. She serves as bioethics expert to the World Federation of the Deaf and chaired the National Association of the Deaf subcommittee on bioethics, and has been affiliated with the University of New Mexico Signed Language Interpreting Program as a practicum supervisor and ethics consultant for over twenty years. Her principal current research interests include an examination of ethical issues in signed language interpreting, emerging technology and the signing deaf community, and Deaf philosophy.
I'm grateful to Elizabeth Barnes, Steven Campbell, Elijah Millgram, Jill Morford, Phyllis Perrin Wilcox, Barbara Shaffer, and Judith Viera for comments on earlier drafts, and, for helpful discussion to Adam Bartley, Gretchen Case, Mel Chua, Leslie Francis, Alison Jaggar, Stephanie Kerschbaum, Anne Leahy, Maren Linnett, Lin Marksbury, Carol Padden, Danial Parvaz, Rebecca Sanchez, Anita Silvers, Joseph Stramondo, Aimee Rivera, Lori Watson, Cornelia Weiss, Sherman Wilcox and to audiences at Choosing Disability: An Interdisciplinary Workshop on Bioethics, Philosophy and Disability Studies supported by the University of Pennsylvania Department of Medical Ethics and Health Policy; the Special Symposium in Honor of Phyllis Perrin Wilcox, the University of New Mexico; and the High Desert Linguistics Society Roadrunner Lecture Series. I'm grateful to both the Visiting Fellow Program of The Center for Values and Social Policy in the Philosophy Department at the University of Colorado, Boulder and the Visiting Scholar Program of the University of New Mexico (Linguistics Department, Signed Language Interpreting Program) for support, including time and space to work on this paper during my sabbatical.
1. Terminology regarding deaf identity is complex and fluid; I have made a number of judgment calls about the use of terms 'deaf' and 'Deaf'. For the most part, I have followed the conventional and recently historical usage in Deaf Studies of lower case 'deaf' picking out all people with auditory variation, and upper case 'Deaf' to indicate those who both use a natural signed language (such as American Sign Language) and who have significant association and affiliation with the community of signing Deaf people, including claiming a cultural identity. Yet not all deaf people who sign claim such an association. Additionally, not all people who are native signed language users possess such auditory variation. My use of the lower case recognizes this larger group, as well as those who reject the upper case 'Deaf' for other reasons (see end note 11). For the purposes of this paper, I have chosen my use of upper case [End Page 294] 'Deaf' to emphasize the sociocultural aspects of the signing Deaf community, and the lower case 'deaf' to indicate a more fluid identity.
2. A patchwork of entities is responsible for determining standards for accessibility; key among these is the United States Access Board, a federal agency charged with developing guidelines and standards for the built environment, telecommunications, medical diagnostic equipment, and information technology. Members of the USAB include public members and members from various federal agencies. https://www.access-board.gov/
3. There are numerous popular publications on the shortage of signed language interpreters domestically and internationally, but surprisingly, I have not been able to locate sources in the academic literature discussing this issue. Joseph McLaughlin's dissertation, Sign Language Interpreter Shortage in California: Perceptions of Stakeholders (2010), provides an in-depth analysis of this at the state level.
4. For context, this scenario occurred 14 years after the passage of the Americans with Disabilities Act.
5. While this process describes signed language interpreter accommodation, it has similarities to the process for requesting an oral interpreter, that is, an interpreter whose job it is to mouth, but not vocalize what is spoken. With the advent of CART captioning, the use of oral interpreters has declined, but some deaf people still prefer and request this accommodation.
6. One of the challenges in writing an academic paper that relies heavily on socio-cultural knowledge that is commonplace within the signing Deaf community, but not well known or well documented in the culturally Hearing academic community is managing the practice of citations of common knowledge. Information that is commonplace in the Hearing world does not require a citation; information that is commonplace in nonmainstream communities does. As an example, consider the standard practice of covering the travel and lodging expenses of academics who travel to give a colloquium talk. Academics are aware that travel and lodging expenses may be taken care of upfront or they may be required to provide receipts to get reimbursement—this is common knowledge in the U.S. academic community. The practices and experiences I outline here are similarly part of general knowledge in the signing Deaf community. (I leave to the reader speculation of how this might contribute to the exotification and marginalization of the work of academics belonging to such communities.) An additional challenge regards testimonial accounts and anonymity in small communities such as that of signing Deaf academics, many of whom are solitaires in their disciplines holding junior rank. For this reason, and with full recognition of the difficulties of reconciling [End Page 295] my Hearing cultural academic norms, I rely on offering personal testimony that I can support with documentation upon request.
7. I'm grateful to Alison Reiheld and Anya Plutinski for discussion on this point.
8. Analysis of models of signed language interpretation is beyond the scope of this paper, and will not be taken up here.
9. The Collaborative for Teaching Interpreting Excellence (CATIE) Center at St. Catherine University in 2017 was awarded a grant for their project Graduation to Certification from the U.S. Department of Education, Rehabilitative Services Administration regarding this topic. Under award H160C160001, the CATIE Center will investigate, pilot, evaluate, and disseminate evidence-based practices to decrease the time between graduation and certification. For an interview with the director of this project, Richard Laurion, see http://intelligeresolutions.com/graduation-certification-expanding-quality-quantity-certified-american-sign-language-interpreters/
10. An infamous example of this phenomenon occurred in late 2013 with the fraudulent signed language interpreter at the memorial service for Nelson Mandela in South Africa. In order not to single out any interpreters, I have opted not to cite specific examples of this phenomenon, which can found though a simple Internet search. Those who know ASL or who are members of the signing Deaf community are already familiar with this widespread phenomenon. I am aware that, in most cases, non-ASL users will not be able to assess the quality of interpretation; this is the obverse side of the coin from the position faced by ASL speakers relying on interpretation into English. Many signed language interpreters have objected to this phenomenon on ethical grounds, citing privacy and other concerns.
11. This distinction has recently been challenged. For a sampling of such accounts, see Innovations in Deaf Studies: The Role of Deaf Scholars, edited by Annelies Kusters, Maartje De Meulder, and Dai Obrien (2017). While I am sympathetic to these accounts, I have not fully worked out my own position, and will follow the standard convention in this essay.
12. CART Captioning extends beyond closed captioning, encompassing access via captions delivered live in numerous venues, from public gatherings (sporting events, theatrical performances, lectures) to classroom and workplace accommodations, and also telephone relay services. This accommodation is used by both non-signing and signing deaf and hard of hearing persons.
15. Audism is a term coined by Tom Humphries (1977), a Deaf Studies scholar to describe the discrimination experienced by signing Deaf people. He first [End Page 296] uses this in his doctoral dissertation, Communicating Across Cultures (Deaf–Hearing) and Language Learning. p. 12.
16. Again, this is a commonplace experience in the signing Deaf community that ordinarily would require a citation (since it is a piece of cultural knowledge), but the lack of documentation in academic contexts (in English or other spoken language other than ASL) presents a challenge to the academic writing about this cultural knowledge, which may be challenged by those who are not privy to this.
17. This is a complicated question that deserves more space than this topic-setting paper can manage and will not be addressed here.