Words Matter beyond the Word Police

My ideas depend on a largely temporal distinction between impairment and disability, although not in a classic biology/society dualism.¹¹ Both are socially constructed. Here I do differ from others, including in this issue, who collapse or interchange impairment and disability because their community does. In disability studies we debate, or passionately refuse to debate, binary word choices such as the long-standing argument between “disabled person” and “person with a disability,” or “people” versus “identity-first” language. Students learning about disability studies want to be told which is correct. I eschew the “word police” in favor of conversations about meaning. To avoid offense, we can talk about disability without using either “disabled people” or “people with disability.” If the focus is connecting to a social movement, writing this article, or teaching, I use words that I hope will best communicate my ideas. None of my choices are for variety, “honoring,” or not offending. I understand I am a “person first.” I have embodied anomalies that are socially marked as “impairments” because of “discrediting attributes” as perceived by others, not as lived by me.¹² Once perceived, impairment is a route to disenfranchisement; I am “disabled” by that perception and disenfranchisement. Impairment may not trigger an experience of disability oppression; but when it does, I become a “disabled person” precisely because my personhood is disabled by attitudes toward my perceived “impairments.”

I also eschew all of the overused wordplay such as dis/ability, dis/ableism, able-disabled, and challenged, even if it is not gratuitous. I do not use “disability” in its noun form comfortably except as a name for a perceived demographic category (Friedner 2020) and as a name for an experience. I particularly avoid “disabilities.” Concretizing disability as something plural or with a range of severity seems so divisive that I will restructure a sentence entirely to avoid it. I would rather destabilize the disability/not disability binary than explode disability into the plural. I acknowledge that my socially perceived “impairments” are multiple, as are the barriers I face and the contextually appropriate accommodations I expect, but disability is a unifying experience.

Apprehension of Disability

In American culture, disability—like race, gender, nationality, and any other imagined identity characteristics—are situated in a world where it shifts from background to foreground in our quotidian lives. This is not without risk. Certain experiences cause perceived impairment to pop into the foreground as problematic, the “light bulb” moment when an impairment becomes a disability, a spacetime out of spacetime experience. This starts from or can lead to embarrassment and then to the apprehension of disability status. When repeated often enough in multiple contexts, embarrassment as a tool of ableism wanes and a consciousness of ableism and of disability identity emerges as a strategy to manage the categorization of disability as a social vulnerability or risk.¹³ Chronic illness, temporary injury, and all kinds of bodymind anomalies in contextual spacetime can trigger the apprehension of disability status. It takes repetition and some reflection to create the disability identity “access intimacy, interdependence, and disability justice” that disability advocates express (see Mingus 2017).

When people have significant exposure to disability, they can become adept at recognizing disability expertise and helping in a way that makes disability background and other activity foreground. Applying the concept of “affordance” (Dokumaci 2017), which I think of as openings in social structures that create opportunity or well-being, I may choose to gracefully accept help I neither need nor want, but I am clear that it is not my affordance but my helper’s. This experience is what I want to share in my micro-autoethnography here where “microaffordances” are but tiny cracks. That is why I started with my “Coffee Cups” vignette above. I allowed the waitress’s need to feel kind lead me to truthful humor.

Blank Faces

I tell my students:

In the next vignette, like “Coffee Cups,” I again show how disability pops into my own consciousness and intrudes on my life while I am otherwise engaged because of a social interaction. Remember, my impairment reality is obvious although uncommon, but my chosen accommodation is not. I can drink/slurp the top half from most cups without picking them up or even touching them. The bottom half I can only splash over the room should I try to pick it up and I tend to burn my tongue with straws in hot coffee. The other common solution to the “Devva” problem waitresses assume they/I have is to offer a disposable cup so they/I need not be concerned about breakage. I can’t even touch such a cup without knocking it over because it is too lightweight.

Alone?

This foregrounding of disability caused by the actions of clueless others has little relevance to my activities except to block them (Shuttleworth 2002). Perhaps my marching gait is a bit off, but my endurance is not.

Embarrassment and Disability Apprehension

I am indebted to Hughes and Paterson (1997) for their classic phenomenological elevator spacetime disability conundrum vignette. They describe how when the elevator doors open, and someone gets on and asks Hughes a question that does not have a yes/no answer, he can at best stick the footplate of his chair in the door to give his CP (cerebral palsy) mouth time to answer. I know this “innocent” questioner well.¹⁵ S/he is usually embarrassed that they have made a disabled person go through the effort to answer; they may break into profuse apology, asking more rapid-fire questions we do not have time to answer. Or they may be disturbed that their time is now engaged past the usual elevator spacetime. Although tiresome, we “crips” are accustomed to this. Some of us get the setting-people-at-their-ease, however much we wish for the reverse courtesy. When spacetime permits, I do the setting-at-ease by assuring people “I know I’m hard to understand, this is NOT news to me.” If I want any kind of relationship with the embarrassed, I must help them over it. The need for others to join me in employing communication accommodative microaffordances, such as turning a face toward me or putting down a phone, is often central to such conversations. With a recognition of cross-impairment synergy, this is true whether we “present” with “expressive” impairments, strange voices, mechanical voices, proxy voices, confused voices, signed voices, slow voices, and/or with “receptive” impairments, sound processing, hearing, listening, contextualizing, or combinations.

There is, however, a darker side to embarrassment and disability when someone is embarrassed for someone else. While I have realized I do not have the luxury of feeling embarrassment, to assume I am embarrassed, or that anyone is or should be embarrassed for me is profoundly ableist. I may need help with many things, but being embarrassed by my experience of disability is not one of them. Embarrassment over the mere existence of disability is oppressive. In these cases, my interlocutors feel free to ignore public norms of word and deed to invade physical and psychic space to “assist” me in my self-presentation to minimize the disability stigmata their own unbridled perception of disability has bestowed on me. They are both the author of the problem and seek to be its solution. They can and will, without asking, either seek to “fix” me or to control me so “my” disability is minimized according to others’ views. This loss of self, this “management” of personality, is ableist intrusion. In the case of people who used to be called “retarded,” this phenomenon is magnified. While I endured that R-word epithet only from spitball-throwing boys on the school bus, others were and still are not that lucky. They experience an extreme ableism for which I still use “handicap.” Someone encounters “handicap,” as I use it, when oppression goes beyond a disabling of personhood to remove it altogether. Philosopher Eva Kittay (2001) addresses this circumstance when she writes of the joy she takes in her daughter Sesha’s affective expressions. At the same time, she acknowledges Sesha’s profound care needs; although Sesha is nonverbal, Kittay highlights a reciprocity others do not see.

Although I experience both mobility and speech impairments, sometimes people are aware of both and sometimes not. My experience of disability oppression is, however, singular when it is foregrounded in my vignettes. Sometimes my mobility issues surface in an unusual gait; other times it is my inability to write in small blanks or carry certain things. For example, at the bank when I limp in, I am offered a desk and a chair; this is very nice except I can only handwrite standing up or kneeling on the floor. Then, after I start to speak, I am offered a pen and paper. Sometimes I wave my crip fingers at them. Sometimes I answer no to “Can you write that down?” Sometimes I say okay and kneel on the floor, as I do at home. Perceptive tellers learn to think twice before asking a limper and mushy-speaker crip to write. These autoethnographic vignettes reveal the subtle variations in how speech impairment becomes speech disability, and how mobility impairment becomes mobility disability in mainstream life. Like others, I continually invent microaffordances and direct accommodations. There is a reason I accentuate my odd gait and hold my ticket in my “bad” hand when boarding a plane: I want the preboarding affordance.

On the Accommodation Octopus

The concept of accommodation currently enshrined in American regulation is a problem. It both over-individualizes and overgeneralizes. Ignoring community accommodation, it places the burden on the individual to give up some affordances in order to get others, while it generalizes building codes as if all wheelchairs were the same height. It is about others demanding that you change to be disabled their way. For example, in academia, a student’s most common accommodation is extra time. What is the most valuable thing we have in life? Time. What is the last thing most employers want to offer as an accommodation? Time.¹⁶

The health care system has become a gatekeeper to accommodation. This exacerbates its place as an inappropriate economic engine, creating an accommodation industry. Starting in childhood, medicine is entangled in the provision of basic education. In order to get or get out of “special education” services, you have to invoke the power of medicine. I remember asking my pediatrician to get me out of gym and get me into advanced placement French instead. My mom wrote the letters he signed. Later, at 30, when I decided to try learning to drive, I needed a letter again. I asked my neurologist for a letter saying I could drive. He asked, “Can you drive?” I said, “I don’t know; I need a learner’s permit!”

In this multitentacled system, in the conceptualization of the problem in the moment, in the way in which you look for help, or advocate for change, if you are in the realm of disability or the domain of illness, you do it differently. People move through these domains in life; you cannot act on all of them all at the same time. That is why I am so careful to describe “my” disability as an experience of a certain kind of exclusion, as opposed to describing it as dystonia, which is the diagnosis, or as speech and mobility impairment, which is the realm of functional limitations. I seek accommodation because of disability; the specifics are because of how impairment as a social category manifests in different contexts.

Week One Introductions in an Online Class

How do I greet an online class? How do I make them allies? I use humor and performance to introduce disability in person. I want to perform disability online in a way that I cannot avoid doing in a face-to-face class. I want to disrupt students’ notions of disability and impairment. I start by posting a video of myself spinning wool surrounded by a living room strewn with dozens of skeins of prize-winning yarn I have spun. I show them something that they cannot do and that no one expects me to be able to do. I look for that “pop,” a kind of culture shock as a way of introducing myself. I started talking during the filming.¹⁷ About halfway through I realized I was unintelligible and started speaking nonsense, real English words, but nonsense. The prankster in me wondered, would they notice? Then I posted this introduction.

Online teaching is counterintuitively more intimate than a face-to-face class. Even the “quietest” student speaks. Participation is transparent. Disability experience disclosure is the norm, as is student mutual support. I ask them, “What’s missing from the video?” They answer, “Captions,” but at the same time say that they were beginning to understand me by the end. “You mean the gibberish?” I ask.

Week One Introductions to a Face-to-Face Class

Scheduled to teach undergraduates at a school new to me, I get an automated email message from the student accommodation office, my first, that a student’s prior accommodation request is “canceled.” I respond:

If I, as disabled faculty, found this communication rude, how must others feel? This is not how I want disability represented. I received a reply.

At this school, as is common, disabled student accommodations are met by one office and disabled staff needs by another. Luckily, these two offices DO talk to each other in this case. While as a new disabled faculty member I was not clued in about the faculty office ahead of time, and was sent to the wrong building twice, for one hard of hearing (HoH)/deaf student’s request, I was told, it MUST be negotiated weeks ahead in a phone call, despite the fact that phone calls are inaccessible to me as any HoH/deaf student would surely understand. The business of student accommodation provoked faculty disability. This possibility was outside their disability world imaginary, causing my experience of disability to pop again into that foreground of embarrassment and vulnerability, and I seethed.

For the first class, I had a captioner trying to revoice; that was my idea, a bad one. She felt embarrassed and exposed, standing beside me instead of sitting in a corner behind her machine preprogrammed to type “inaudible” with a single stroke. From the back of the room, students with advanced knowledge of the field feed her the vocabulary. It helps but also confuses as disembodied voices come at her. This captioner is not a good revoicer, but others might be. The Chinese students flee, some during and some after the class. They may be seniors, but this is a test of their English skills they do not dare take.

The second class has captioning, CART projected for all to see. Most captioning in class is “closed,” available only to eligible students via Wi-Fi to their laptop. My request that it be “open,” that is, projected, hit a glitch. It seems the software does not allow a font size large enough to be seen from the back of the room.

The accommodation office also takes the initiative to call in a pair of ASL (American Sign Language) interpreters who get Deaf Culture. Doesn’t take them more than a few moments to see they are in Crip Culture land with me. It takes them most of the first class to get the protocols and hand signals for HOW they are supposed to revoice. Recognizing kindred souls, I stop them when they begin to paraphrase instead of revoice. Looking deep within their eyes, hands on cheeks, in performance mode for the students, “Your voice is mine, word for word. You don’t need to understand. Listen, repeat, forget; listen, repeat, forget; listen, repeat, forget; listen, repeat. That’s your job. (In fact, if they relax about trying to understand, they will.) Your mouth is MINE,” punctuated with a kiss. Everyone cheers. Lesson one in “Embodiment and Disability” is delivered.

I tell the students to take note of how meaning emerges from, or is muddied by, the sheer physical and joint mental effort our communication accommodations absorb, and to be aware of the role they play individually as solution or barrier. Not paying attention goes beyond being a bad student; it is ableist. I do not expect them to work as hard as we four: two interpreters, a captioner, and me, all of us at least 20 years older than they. But meet us halfway.

My Listener’s Brain

I give the students a piece of disability apprehension theater I have developed over the years. Just as I performed my ASL interpreter turned revoicer’s brain above, I perform my naive listener’s brain mindstream when it first encounters my live speech. I tell the students that I know they are thinking:

Good humor and intellectual surprises work to dispel embarrassment. The class is still awake at 9:15 p.m. The HofH student only learning ASL is happy as she lip-reads the revoicing interpreter and then checks the captioning. One interpreter must stop putting her hand over her mouth when she is embarrassed if she does not understand me. Maybe later the two of them, both big women, will figure out how to join the circle rather than sit in the middle of it. The students with sound processing problems are happy with the captioning. Everyone likes the idea of getting the transcript. Later it will dawn on them that because attendance is required, a student may miss class but make it up by reading the transcript and posting comments to the class website, a task much harder than just showing up.

It is a constant dance to both manage all these classroom affordances and accommodations AND to teach. I tell myself that the mere routine exposure to so much proximate disability expertise to apprehend IS the lesson. I explain my cross-impairment synergy process to the class.

I try to curb students’ thumbed conversations with people not in the room. It breaks the one-person-talking-at-a-time rule. After all perform their brain, students respond well when told,

Zooming to GoToMeeting

Technology is blessing and curse as it intersects my accommodations. We meet in real time via a combination of voice and chat. I feel pressured to type into chat fast and not fix typos, and the chat is not all mine. Other people interrupt me even when I am giving a formal report. My current solution is to prepare ahead such a good written report that I anticipate any questions and to also develop a close enough working relationship with the correct committee chairs that they are prepped to answer if there are questions. A good meeting is one where I do not need to talk. If I do, I fear the uncorrected chat will be judged and I will be found inarticulate—my audience will apprehend a “disability” I do not have! How do I manage my need for patience with the predominant culture that may even privilege some hyperactivity (Nishida 2016)?

Independent Living Removement?

I am in a play, a farce, it seems. I have Skyped into an important most-of-the-day meeting. Because of my speech, we always have chat open so I can type. We have two-way video and speakerphones at both ends. We start with a brief formal meeting; the chair solicitously asks for my vote and I unmute and remute for them to give my “Aye.” Then we have a guest, and the camera for my visual is just a few inches from our presenter’s butt. They improve my sightlines and we all laugh. After our speaker leaves, it is time for the six of us to get to work. My virtual self appears to be about 10 feet from everyone else. I have a great view of backs. (Later I learn no one thought to move the table closer to the outlet.) My chat messages go unseen. I interrupt the conversation via speakerphone and try to say, “Please read the chat.” The leader gets up, walks over to me and reads—no, actually paraphrases—my typed words in the third person, as if I were not there, for the others. She only sees the most recent of my typing as it scrolls off the screen. With her nose inches from the camera, she stands bent over my laptop self. She asks me to be quiet while SHE types TO ME. I type:

Now, I HATE to send such bad typing out, but my customized typing software does not link with chat, and there is no time to correct a chat the intended audience seems loathe to read. This would be funny if the organization involved was not a 30+ year old disability service and advocacy one. Should I be surprised?

Aaron the Revoicer

People who use a revoicer often develop an oratorical style. We hear our own words repeated—a unique feedback loop. They may, like me, put the punchline at the end of the sentence so that people do not try to speculate what they think I am going to say. Speculation takes over from listening to what I do say. Truly listening is rare among our culture of multitaskers. Perhaps Moses broke the first set of tablets in frustration not so much over the Golden Calf but that they did not LISTEN to him. Perhaps Aaron’s shame was not allowing the Golden Calf but failing to revoice Moses’s words to the multitudes firmly enough?

What makes a good formal revoicer? Like Aaron, someone who is not too shy, who speaks up. Someone who, if invested in the topic, is not insecure about their own ideas, and does not need to be the one leading the discussion all the time—they need to focus on what the speaker is saying and HOW they are saying it rather than on what they would say or how they would say it. A good short-term memory helps. One protocol with strangers’ revoicing is: listen, repeat, forget; listen, repeat, forget; whereas people who know you well use that knowledge. A good revoicer is also someone who looks directly at the speaker with an expressive face so that the moment they lose the speaker, the speaker knows it. Understanding is interactive and must trump any embarrassment felt when it is wrong and must be corrected.

Families have been the center of communication access for both early- and late-onset speech impairment. Families have had to conceptualize meaning and express it to the outside world. Only recently have speech therapy, signed language interpreting, and alternative and augmentative communication become recognized sciences or activities. As these fields professionalize and services are reimbursable as medical costs, there is lucrative territory to defend with significant processual and emotional clashes among scientific, familial, service sector, and disabled people over validity and process.¹⁹ Within the family, these needs figure into the micropolitics of care. In many cases communication “care” never goes beyond the family. Where it does, we see the development of social and professional accommodative strategies very different from the family. My first-choice accommodation is revoicing. Institutionalized by the work of Segalman (2009) in national telecommunications law, it is a little known but required “speech to speech” relay service for all speech-impaired people where their words are repeated (revoiced) to their listener by a trained third-party “communication assistant.” This is now gaining national recognition using my term as “revoicing” in remote and, more often, face-to-face communication.

As people with speech impairments develop clearer ideas of using revoicing as a tool, their perception of what constitutes best practices may be very different with family, friends, or strangers in that role. Because communication is so fundamental, it can form the basis of alternative families that develop in disability contexts (Friedner 2020). Part of this difference has to do with who owns the problem. In India or in Africa, anthropologists are asking whether it makes sense to talk about the disabled family (see Addlakha 2020; Friedner 2020; Whyte 2020). Clearly, there are differences between revoicing as a family strategy where intimate knowledge of the speaker is primary; social revoicing where friends are usually the gatekeepers to participation, and relationships must be carefully managed to avoid misunderstanding and fatigue; and professional settings where accuracy is critical but there may be no prior interpersonal relationship. In the last case, the revoicer probably has been trained as an ASL interpreter or captioner. S/he might be a generic personal assistance-provider with idiosyncratic experience of clients who need revoicing or help with alternative and augmentative communication devices, along with other mobility apparatus.²⁰

Small Talk Communicative Personality

As an anthropologist and as someone with a changing speech impairment, the data collection process for my ongoing autoethnography has revealed some of my own strategies. I had to give up small talk a long time ago. Like so many stigmatized people, I do best when I am funny; I put on a show and use physical humor. Embarrassment, again, can lead to a breakdown in communication. My disability imaginary is a communicative world free of disruptive embarrassment and its consequences: anger, confusion, guilt, and withdrawal. I want to avoid loneliness and promote its opposite (Kulick and Rydström 2015). I want my relationships unconstrained by disability in general or by preconceived notions of a disability hierarchy in addition to real differences due to specific impairment. Anecdotally, I can say that all my friends with generalized and even painful movement disorders that also affect their speech report that their speech impairment is their most troubling disability experience. Along with Alison Kafer (2013), we work toward an accessible future as one where familial, social, and professional revoicing blend and all support participation.

What Do Allies Get?

Allies understand that disability is not about health and that disabled people can be the healthiest in the room, living and dying well. They assume competence and seek comprehension. They offer appropriate assistance based on proximity and exposure to disability that values our disability expertise. They see the complexity and the dynamics among and between impairments and cross-impairment synergy. They understand the project of grasping disability process in all bodyminds and spacetimes with meaningful insight into our variation as well as the ever-changing environment. Our academic allies “get” the sophistication of disability studies. Those in anthropology understand that the time is up for an anthropology of disability innocent of critical disability studies. Allies grasp that disability is big business in America with a huge neocolonial structure of competing NGOs tied to certain activities, occupations, and particular impairment categories. They do not believe that folks with intellectual impairments should have any less choice than others. They understand the catch-22 that the whole service sector, while useful, is also draining cash that could put people in homes of their own with assistance in the next bedroom down the hall or with tools to start their own company. They see that access to intimacy is something that people who experience different kinds of impairment might want as they form relationships with each other based on and contributing to cross-impairment synergy.