All posts by The Mind Hears

About The Mind Hears

A blog by and for deaf and hard of hearing academics

Navigating a masked world when you are deaf/HoH

-Ana

While the pandemic rages around the world, I know I have been incredibly lucky. Like many, I have struggled to keep my kids busy and to some degree engaged with their education, struggled to keep any semblance of work productivity, and struggled to remain optimistic about a return to a post-pandemic life that resembles my pre-pandemic one. However, I have been healthy, and nobody close to me has fallen sick. And—through the accident of timing—I have also experienced the pandemic in two geographic areas, one of which has thus far managed the coronavirus quite well (Germany), and one where I arrived once it was under control (Massachusetts, USA).

Definitely lucky.

And yet… There is a part of me that very much wants to throw a tantrum and howl at the moon about the unfairness of it all. All because of the need for face masks, which have greatly reduced my ability to communicate. 

In the last 4 months, face masks have emerged as the cheapest, most reliable method to stop the spread of COVID-19. We all have to wear them. And while all the deaf/hard of hearing (HoH) people I know are 100% behind mask wearing, many of us have been put in a bind. Navigating effective communication when out and about is never effortless for us. Lip-reading does not capture all spoken sounds, and there is a great cognitive load involved in filling the gaps to understand what is being said. Add masks, and communication with others becomes nearly impossible. 

To begin with, face masks make it very hard for those of us relying on speech- and lip-reading and on signed languages to understand speech.

This has been documented very eloquently in this article by Sara Nović for the Washington Post; in this interview of Gallaudet professor Dr. Julie Hochgesang; in this article by Shari Eberts for the “Living with Hearing Loss” blog; and this post by Nehama Rogozen for Slate magazine.

And, despite the feel-good idea of face masks with clear “windows,” our communication travails aren’t likely to end any time soon, as explained by Katherine Woodcock (@safeandsilent) in this and this blog post. 

And, surprisingly, masks pose an unexpected hazard to our hearing devices.

Alt Text: A worried face trying alternative orders to putting on a behind-the-ear hearing aid, face mask, and glasses. Each time the objects end up in a tangled mess (many thanks to M. Cooke for help with animation).

As a wearer of behind the ear (BTE) hearing aids and glasses—and now masks—I find that there are just too many things hanging from my ears. Trying to adjust or remove any of them leads to a tragi-comic (yes, I am still capable of laughing at myself as I nurse my tantrum) Rube Goldberg machine chain reaction that inevitably ends badly for at least one of my accessories. I derive some solace (and humor) from knowing I’m not the only one facing these issues: 

In the first frame the face of a person wearing a behind-the-ear hearing aid, face mask, and glasses celebrates that everything is on correctly and they can go out. In the second frame the glasses have fogged up.
Alt text: In the first frame the face of a person wearing a behind-the-ear hearing aid, face mask, and glasses celebrates that everything is on correctly and they can go out. In the second frame the glasses have fogged up.

But it is a pyrrhic sort of consolation. Inevitably I find that the effort of trying to navigate a masked world becomes too laborious, leading to a temptation to disengage and isolate. I want the world to beat COVID-19; I also want to not be cut off from the world. On the worst days it seems neither is possible.

Many of us are struggling to come up with solutions for this conundrum wrapped in a mask. Suggestions of relying on pen and paper or speech-to-text apps are helpful for short interactions, but I see friends starting to cautiously socialize in masks, an activity I feel cut out of. While I know that there is likely not a one-size solution for all of us deaf/HoH, I would love to collect suggestions on how to be a part of the masked world.

I leave you with some parting words from Sara Nović to hearing people:

“The burden of communication has never been solely on deaf people. The pandemic has simply unmasked the fact that we usually do most of the work for you. Now that we physically can’t, we need you to do your part.”

Profile: Paige Glotzer

  • Current title: Assistant Professor and John W. and Jeanne M. Rowe Chair in the History of American Politics, Institutions, and Political Economy, Department of History, University of Wisconsin-Madison
  • Location: Madison, Wisconsin
  • Field of expertise: U.S. history
  • Years since PhD: 4
  • Twitter: @apaigeoutofhist; link to website 

Background

I was an only child in Brooklyn, NY, raised by supporting and loving parents. Neither is hard of hearing. Growing up, I never met other HoH/Deaf kids or got accommodations in school. We never watched things with captions or did anything that would help me gain the vocabulary to articulate my experiences. I was likely born HoH, but I finally got diagnosed at age seven and I didn’t get hearing aids until age 16. I got them when a noisy air conditioner in a classroom finally made it impossible for me to compensate with lip reading and context clues. I remember crying because at the time I thought getting hearing aids meant I had a deficit that I couldn’t overcome with effort. (To this day I sometimes don’t appreciate the extent to which I constantly work hard to hear, but I definitely don’t consider myself as having a loss or deficit). I somehow muddled through college with good grades, still unable and unwilling to communicate my needs. It really took graduate school for me to become empowered and proud of who I am. It’s there that I found allies and actually met other HoH and Deaf people. It was there that I first learned terms like “ableism.” I sometimes get frustrated thinking back on all the things that could have been. What if I had learned ASL when I was little? What if I had been exposed to Deaf culture growing up? I try to channel those feelings in productive ways. For example, over the last couple of years I have made a lot of progress with my parents on explaining to them why I need to see their lips when they talk. We already had a great relationship but it’s getting even better now.

How did you get to where you are?

Becoming a historian was a no-brainer for me. I’ve always been interested in history and I’ve always been interested in cities. Long before I formally pursued this career path, my favorite activity was walking through cities and wondering why they looked or functioned in certain ways. I have sharpened those questions over time to focus on the business of housing segregation. 

I have been reflecting on the past lately because my first book, How the Suburbs Were Segregated, was just published in April. It began as a paper I wrote my first year of graduate school in 2010. Graduate school got off to a rough start. It was the first day and I was excited to begin my path toward my dream job of historian. I walked into my first seminar, sat down, and realized with dawning horror that I couldn’t hear a single thing. The professor mumbled. The room echoed. We were seated in a formation where no one directly faced each other. I spent two silent hours trying to hold back tears. Later that day I finally realized: if I wanted to be a historian, I was going to have to do not just the work my peers did but also all the extra work of creating conditions where I could hear. I did that work, I am doing it now as a professor, and know I’ll always have to.

What is the biggest professional challenge (as educator or researcher)? How do you mitigate this challenge?

I face the challenge of teaching classes where some students have taken college-level U.S. history sitting next to others who have never had American history in their entire lives. Being a disabled educator has inspired me to meet this challenge by applying the principles of universal design to my teaching. I ask myself what decisions about pedagogy, content, and course design will create scaffolding and flexibility for everyone. Universal design has also allowed me to consider the intersections of disability with different experiences students face. For example, I make all my readings available digitally and for free. This makes the readings more accessible for students, but it also helps students who might not be able to afford to purchase books. I do not put the burden on the student to request an exception to some sort of “normal;” I teach for everyone.

What is an example of accommodation that you either use or would like to use in your current job?

Volume Amplification helps me do my job better. I have worked with my department to ensure that microphones will be used at all meetings and events with over ten people. For teaching, I use something called Catch Boxes, squishy cubes with microphones inside. My students can toss the Catch Boxes to each other and speak into them. It’s a form of amplification that’s scalable from my small classes, where I use one Catch Box, up through large lectures where I use two or more. The great thing about the Catch Boxes is that they open up new pedagogic possibilities—I can have free-flowing discussions even in a large lecture. My colleagues who are not hard of hearing generally write that off as impossible.

Any funny stories you want to share?

It’s difficult to think of a single story because sometimes my life feels like one long blooper reel. The way that I hear makes distinguishing certain sounds from one another very difficult. Unfortunately, that means I have a very hard time knowing whether someone has said ‘Paige’ or ‘Kate.’ This is a problem whenever I’m in the room with a Kate, which is weirdly often! I happened to sit behind a Kate for most of my senior year of high school. Those were fun times. 

Pale skinned woman with short wavy brown hair and plaid shirt laughs while looking downward

Advice to younger self

“You internalized a lot of shame and anxiety about your hearing because you thought your hearing was an inconvenience to others rather than an important part of who you are. It is okay to ask to turn on captions. It is okay to demand accommodations. And you are justified in feeling frustration or anger when people make ableist assumptions. You’ll learn to become a better advocate for yourself over time.


A brown-skinned woman wearing a blue patterned dress, a gray headwrap, and hearing aids sits on a bench looking to the right. To her right, a white cane stands upright.

“Moving Together”: Or Researching Health Care Access as a Disabled Academic

–Arrianna

This is a repost of post published on 11 March 2018 by Dr. Arrianna Planey on her blog. You can see the original post at this link and her gorgeous blog at this link.

As I work on my dissertation, one question arises over and over: whether my disability status as a researcher matters, and how much.

I vacillate between foregrounding my experience as someone with disabilities and downplaying my disability status. That choice depends on the context. If my credibility as a researcher is in question, I’d rather people not focus on my social status, because the “ideal” academic researcher is still white, non-disabled, and well-off. The “view from nowhere” is the “ideal” academic’s gaze.

A brown-skinned woman wearing a blue patterned dress, a gray headwrap, and hearing aids sits on a bench looking to the right. To her right, a white cane stands upright.

But I am compelled to foreground my experience as a Black woman who is also deafblind when I talk about why I choose to research health care accessibility and help-seeking among disabled adults in the U.S.- especially people with sensory and mobility-related disabilities. My interest in this research is driven by my own experience- the foregone care, the delayed diagnoses, and systemic barriers that undergird those outcomes.

Moreover, it is necessary to contextualize those systemic barriers with the fact that many disabled adults remain “dependents” due to a confluence of policies that simultaneously penalize benefits recipients for not having enough of a work history and penalize those who have too many assets. For further context, the recent push for Medicaid “work requirements” in states across the US (even states with Democrat governors), means that disabled people potentially face worsening access to health care- a particularly pernicious circumstance given that their access to Medicaid may be predicated on having a diagnosis that affirms their disabled status, which presumes access to health care. I mention this because disability status is not necessarily the same as one’s medical status- estimates of disability prevalence based on diagnosis by definition undercount by excluding people who do not have access or have not procured a diagnosis that corroborates their disability status.

For this reason, my project looks at both health care providers- their location decisions, their clinical practice- AND patients as I study health care access as a process. In the U.S. health care providers play a key gatekeeper role in the medico-legal complex that comprises the social safety net.

For this reason, my project looks at both health care providers- their location decisions, their clinical practice- AND patients as I study health care access as a process. In the U.S. health care providers play a key gatekeeper role in the medico-legal complex that comprises the social safety net.

More specifically to the field of Geography and the subfield of health geography, the question of the researcher’s subject and social position is important methodologically. Currently, much of the debate over emergent qualitative methodologies- e.g. ‘mobile methods’- presumes that the researcher is able-bodied. Within the ‘new mobilities paradigm’ (Sheller & Urry, 2006), the ‘walking interview’ is a popular method for capturing participants’ experiences of place. However, much of the literature on the ‘walking interview’ provides methodological guidelines and considerations that assume that (1) walking is the normative mode of mobility, (2) that the researcher can balance managing the recording equipment with conducting the interview (no fine motor skill constraints or no need to use a cane or operate their wheelchair), and (3) they assume a power imbalance between the researcher and participant on the basis of disability status (Sheller & Urry, 2006; Finlay & Bowman, 2016; Hein, Evans & Jones, 2008).

Parent (2016) makes an important intervention in this literature, providing her experience as a researcher who uses a wheelchair as she uses mobile methods in her work. She found that her status as a disabled person was overlooked by even disabled research participants, with whom she initially corresponded via email. One blind participant suggested meeting at a coffee shop, assuming that the researcher was able-bodied. The coffee shop was not wheelchair accessible, and the author’s disability status became the initial subject of conversation, rather than the respondent’s sense of place in their activity space. Later in that same interaction, the author made a comment to the tune of “This is going so smoothly!” to which the blind participant replied

“Yes, it’s true. It seems to be going well, but you know, I can never say that to myself. I always have to take one step at a time. Too often I thought it was going well, and then I hit my head on something. Even when you think it’s going well, you can go one step at the time and think ‘OK, this is good. My foot and my face didn’t hit anything. I am fine.”

(Parent 2016, 528)

This foregrounds the importance of intersubjectivity, a concept taken for granted in the broader literature on ‘mobile methods,’ which emphasizes “moving together” without considering that each person in an interaction may have a different form of mobility that structures the interaction itself (Novoa, 2015). For example, in the above example, the interview was punctuated with the researcher’s verbal descriptions of the path to enable the blind participant to navigate the space safely. They had to “move together” through spaces that were not designed with them in mind.

Moreover, a human geography tradition that centers disability as a variation in human experience is one that moves from thinking of space in  in terms of what is empirically measurable, or that which ‘contains’ the social toward a relational and dynamic understanding of space that is constituted by social relations (which are ever shifting). Casey (2001) sums it up nicely in the term ‘co-ingredience’- “There is no place without the self and there is no self without place” (pp 684). The social scientific methods that best apprehend these dynamics in space are what Sayer (1992) terms to be “intensive” methods, which tease out the working of processes among a small number of cases with greater attention to context and applicable social theories that may inform their interpretation. They must begin with an understanding of social structures as conditions of possibility (context-dependence). These methods may be coupled with quantitative data collection and analysis, such as qualitative GIS and travel diaries. However, we must return to “moving together” with a greater attentiveness to intersubjectivity- between disabled and non-disabled people, between disabled people (because disabilities are heterogeneous*), among networks of people within a neighborhood, and between caregivers and care recipients.

* Said heterogeneity among disabilities (lived experiences with disabilities, as well as comparative types and degrees of “limitations” across social spaces designed for and by non-disabled people) is overlooked or ignored in law and policy regarding “accessibility” for disabled people in public spaces.

References:

  1. Chouinard, V and Grant, A. (1995). On Being Not Even Anywhere Near ‘The Project’: Ways of Putting Ourselves in the Picture. Antipode. 27. 137-16
  2. Finlay, J.M. and Bowman, J.A. (2016). Geographies on the move: a practical and theoretical approach to the mobile interview. Professional Geographer 69(2), 263-274. 
  3. Hein, J.R., Evans, J. and Jones, P. (2008). Mobile methodologies: theory, technology and practice. Geography Compass 2(5): 1266-1285.
  4. Merriman, P. (2014). Rethinking mobile methods. Mobilities 9:2, 167-187. 
  5. Novoa, A. (2015). Mobile ethnography: emergence, techniques and its importance to geography. Human Geographies 9:1, DOI:10.5719/hgeo.2015.91.7
  6. Parent, L. (2016). The wheeling interview: mobile methods and disability. Mobilities 11(4), 521-532. 
  7. Sayer, A. (1992). Method in Social Science: A Realist Approach. 2nd ed. Routledge: London and New York
  8. Sheller, M. and Urry, J. (2006). The new mobilities paradigm. Environment and Planning A 38, 207-226
A dark skinned woman with glasses and head scarf smiles to the camera

Biography: My name is Arrianna Marie Planey, and I am an Assistant Professor in the Department of Health Policy and Management in the Gillings School of Global Public Health at University of North Carolina, Chapel Hill. I am a health/medical geographer with expertise in measuring and conceptualizing health care access, health and healthcare equity, and spatial epidemiology. My research and teaching focuses include the application of spatial analytic/statistical/epidemiologic methods to study interactions between health(care) policies, healthcare access and utilization and underlying, population-level health inequities, and identify points of intervention at structural- and system-levels. At the core of my research agenda is equity in access and outcomes, with attention to the intersections of race, class, gender, and disability status. I earned my PhD in Geography from the University of Illinois at Urbana Champaign, after earning my Master’s and Bachelor’s degrees at the University of Chicago and the University of California, Berkeley respectively

The Mind Hears affirms that Black Lives Matter

-Michele Cooke and Ana Caicedo

The murders of George Floyd, Breonna Taylor, Ahmaud Arbery, and too many others stem from historic and continued systemic oppression of Black Americans. The disabled and deaf communities are not without white privilege and we need to do the uncomfortable work of recognizing and dismantling these privileges. BarbaraSpiecker and Alicia Wooten express this beautifully in their Atomic Hands video (link here). We encourage you all to watch the video.

White privilege within the Deaf (signing deaf) community has been manifest as better education for white Deaf students and a greater proportion of whites in leadership positions within the Deaf community. Furthermore, a study of the Post-secondary achievement of Black Deaf People in the US by Garberoglio et al (2019)  reports that more Black deaf people are looking for work than white deaf people. David A. Player’s blog provides a summary of white deaf privilege. 

“White people with disabilities also have a white privilege because whiteness superseded all forms of identities that could be considered as deviance attributes. They will also get a form of assistance from a white able-bodied hearing dominate society” 

David A Player, Dear White Deaf People  (link here)

We deaf and hard of hearing academics know what it is like not to be heard. We know what it is like not to be included. But white deaf/HoH academics have the privilege of our whiteness as we interact within our communities and navigate our careers.

The Black community in the US has historically helped the deaf and disabled communities in their struggle to be heard and recognized. In 1977, disability activists led nationwide sit-ins to protest the lack of enforcement of Section 504 of the Rehabilitation Act of 1973. Section 504 prohibits institutions, such as universities, that receive federal funds from discriminating on the basis of disability; however, until 1977, there were no regulations to enforce the law. During the 26-day-long sit-in within the Federal Building at 50 United Nations Plaza in San Francisco, the Black Panthers fed, assisted and supported disabled protesters (read here or here or here about Bradley Lomax’s key role in the protests). The sit-in concluded with the signing of regulations that enforce Section 504. By the way, these regulations are why US universities have disability service centers for students. During the Deaf President Now protests in 1988, Gallaudet University students shut down campus to protest that the University had only had hearing presidents in its 124 year history. During that week-long protest, the local Black community supported Gallaudet student protesters. Both of these impactful protests as well as the 1990 Capital Crawl led the way towards the passing in 1991 of the comprehensive Americans with Disabilities Act, which prohibits discrimination on the basis of disability regardless of whether businesses receive federal funds.  

It is long past time for us to support our Black colleagues, friends, and neighbors. The Mind Hears commits to amplifying Black deaf/HoH voices and perspectives.

The murders of George Floyd, Breonna Taylor, Ahmaud Arbery, and too many others stem from racism and the systemic oppression of Black Americans. The disabled and deaf communities are not without white privilege and we need to recognize and dismantle these privileges. During the Section 504 sit-ins of 1977 and the 1988 Deaf President Now protests that contributed eventually to the 1991 Americans with Disabilities Act, the Black community aided and supported protesters. It is long past time for us to support our Black colleagues, friends, and neighbors.

The Best Laid Plans: A remote teaching journey

This is a repost of The best laid plans from Dr. Rachel Obbard’s blog Pandemic Pedagogy. The post is the first in a series that chronicle her adjustment to remote teaching after the coronavirus pandemic shut down face-to-face learning. Rachel still has a few more weeks of remote teaching this term, so stay tuned to her blog for more posts.

Drawing of a horse at the left it is realistic (semester begins) the middle is more cartoonish (told to plan for remote teaching) the right is stick figured (actual teaching)

The drawing above came across my Facebook feed. The artist’s comment was “We’re stick footing it now, people!” Indeed.

Last week I took my carefully crafted syllabus for Spring 2020 and tore it up. Then I sat down with a pad of paper and a pencil and worked out what my class this Spring will look like, taught remotely. I would like to think that Technology and Sport this spring will look more like the middle of the horse than the stick foot, but stay tuned. Both the students and I need to adjust to this new way of teaching, learning, and engaging.

How I Hope to Adjust – Fortunately I have been using the learning management platform Canvas for four years. It is fairly easy to upload reading assignments, either by downloading a PDF from our library or scanning a few pages from a book. I can also collect and grade student work through Canvas. Faculty who teach in the spring are still allowed into the office to use the scanner, and we even have one at home. I much prefer to mark up physical copies, and can do a better job that way, but it is possible electronically.

The hard part, I think, will be replicating or replacing the classroom discussions and in-person individual conferences with students. With video conferencing apps such as Zoom it is technically possible, but as with many things, the devil is in the details. One of the problems I’ve always had with Zoom meetings is that the dynamics of speaking in turn are pretty kludgy. It takes time to get everyone’s attention (and unmute yourself) when you have something to add, and this means missed opportunities, awkward pauses, and people accidentally talking over each other. Moreover, the latter is harder to sort out when all those voices are coming from the same direction.

Perhaps this is a good time to add that I’m hearing impaired. I have a congenital hearing loss in both ears, and grew up supplementing my hearing with lip-reading. As a result, I really need to read lips to hear people. This makes the challenges above even more difficult for me. Another problem arises when the audio and video aren’t synchronous. I note lags of even fractions of a second. As the lag gets larger, my difficulty with understanding increases. I hope that all my students have good internet bandwidth, and that the internet and Zoom don’t get bogged down by all the demand!

On the plus side, Zoom seems better than some other video conferencing applications I’ve used because in gallery view it puts a green frame around the person speaking, and in another mode it makes the speaker’s face larger. Also a tremendous help is that I have an ADA accommodation for remote captioning for our Zoom classes. Speech-to-text applications still don’t work great (as was the case when I worked at a firm in the 1980s who made one). Remote captioning means having a real human being listening to what is being said (using either a telephone or Zoom itself). They type what they hear and this text appears on my screen. It’s amazing!

What About the Students – Notwithstanding all of the challenges above, I know that many students this term will have an even more difficult time. Not everyone can return to a stable environment conducive to scholarly pursuits. I couldn’t have in my first year of college. Some of our students don’t have internet access at home or a quiet place to work. Some return to family responsibilities or will need to get jobs (having lost the ones they had at school). All will have to work harder to access the services and resources they had on campus. That’s on top of having to adjust to living at home again, and at the same time meeting our expectations of them. Here are some comments from my past students:

“The first thing that comes to mind is the mixed challenge and blessing of being at home with family. While school has its own (quite extensive at times) set of distractions, it is fundamentally a place of learning where most of your peers probably spend at least a few hours every day studying, there are many different places to go to study, and you can study whenever you’d like and really make your own schedule. In high school, I must have mastered the art of getting my work done in spite of my family, but it was a bit jarring to come back to it.”

This student and others talk about how even with supportive, understanding parents, it can be difficult as an adult to resume the ‘child’ role and live by someone else’s rules. Aside from general friction, it forces students to alter their work routines and creates new demands on their time – family dinners, babysitting, chores, and as one student puts it, to “generally be an active and contributing citizen of the family.”

For many students it can mean difficulty working at the times they find best and finding a quiet place to do work. Getting it right, if even completely possible, can take weeks.

Another past student writes, “I’ve had an idea of how disruptive this pandemic is, but as spring term gets closer, I’m realizing more and more how this really complicates and changes things for the worse.… I’m certainly anxious to see how this will all work out. I do have internet access at home, but my house has never been a great place to study (noise, commotion, etc.). I’m hoping I can find my way to the library or coffee shop, but I live pretty far away from both.”

And so … – We are encouraged to teach as much as possible asynchronously, which means in ways that don’t require the students to turn up at the same time via high-speed internet. I have decided to hold a short (~1 hour) Zoom meeting twice a week, attendance optional but encouraged, and to hold most ‘discussions’ on Canvas (i.e. students type their responses to a prompt into a text box, which other students can read and respond to). It is going to be super hard to have really complex discussions and build community this way, but we shall try (again, stay tuned).

I will have to replace one of their major projects, a group one. The project requires in- and out-of-class group work and culminates with a presentation to the whole class. If that isn’t bad enough (for asynchronous teaching in times of social distancing), the project requires that I work with one group at a time to help them understand a peer-reviewed engineering paper. Sooooo…… NO. I am replacing that with an independent assignment, and, hopefully, some great discussions as a class and in breakout groups. I think more than anything this term, I want to see if I can build the kind of community we do in on-campus classes. I don’t mind if my horse has a stick foot, as long as he has friends.

white woman with ombre green hair wearing maroon sweater in front of treesRachel Obbard: I am an Adjunct Associate Professor and Senior Lecturer in the Institute for Writing and Rhetoric at Dartmouth College (New Hampshire), and a Senior Scientist at the SETI Institute (Mountain View, CA). I teach writing in science and first-year college writing courses. The latter revolve around the intersection of technology, sport, and ethics. My SETI research involves exploration of planetary ice (Earth and Mars) and I am currently leading a project to develop instrumentation for a future mission to Mars’ north polar cap. I am congenitally hard of hearing (HoH) and lip reading accounts for at least 50% of my access to speech. While I wear hearing aids, I need to see a face and mouth, or captioning, to have full access and understanding. 

Profile: Alex Lu

PhD Student, University of Toronto, Canada

Field of expertise: Computational Biology

Years of experience (since start of PhD): 5 years 

Describe your hearing: Profoundly deaf; I’m oral and voice for myself, but I use ASL interpreters for professional interactions

Background

I grew up mainstreamed in Vancouver. For most of grade school, I used hearing aids —back when I was in elementary school, we still had those clunky FM systems that attached to your hearing aids through wires and boots. I was lucky to have a hearing resource teacher who recognized the importance of sign language, and she brought in a Deaf teacher to teach me and a few other Deaf/hard-of-hearing students the basics in grade 9. In grade 11, I decided to stop using my hearing aids entirely. Part of my decision was practical—I had a progressive hearing loss, and it was getting to the point where I felt like my hearing aids weren’t helping enough to be worth the headache they gave me from amplifying everything. But the other reason was because I had grown to resent what they represented: how hearing people always expected me to “fix” myself to be acceptable to them. My parents and teachers were furious—I was in the middle of a highly intensive International Baccalaureate program and they didn’t know how I would get through it. But I managed to cobble together strategies, including basic ASL and borrowing notes from classmates. I’ve used ASL interpretation for my academic needs ever since. 

I’m also queer, and outside of academia, I do a lot of activism in bridging Deaf and queer communities. For a while before my PhD (and even well into it), I was active in many non-profits. Some of my fondest memories include negotiating accessibility in Pride boardrooms, emceeing Deaf poets for spoken word festival events, and moderating all-Deaf panels about prison justice. 

How did you get to where you are?

Many people in academia will talk about how they’ve always known what they’ve wanted to study since they were very small. I am definitely not one of those people. Rather, I got to my current interests by taking opportunities as they arose, and by being receptive to advice. I began studying computational biology as an undergraduate because a family friend mentioned it might appeal to me. I had many interests and didn’t know whether I wanted to major in English or history or a science; I figured that their advice was as good as any. As I worked through my degree, I met a graduate student who asked me to volunteer for a lab that wanted someone with computational skills, and I specifically got involved in image analysis because that was the data the lab worked with. That experience opened the door to my PhD; I applied to just two graduate schools upon finishing my undergraduate, and I figured that if I didn’t get into either, I would just start my career. But one graduate school liked my background enough that they accepted me, and I’ve been working in image analysis and computer vision ever since. 

That isn’t to say that I am not passionate about what I do; I love working on challenges in big biological image datasets, and it really challenges my creative problem solving skills. But I am fundamentally a very flexible person, and I can easily see alternative histories where I stumbled into something radically different—comparative literature, maybe, or psychology—and would have been equally as happy and passionate about that. In retrospect, taking opportunities as they arose was a very good strategy for me as a marginalized disabled person—it meant that I was always surrounded by people who were eager to invite me into their space, so I attribute a lot of my success to being easy-going enough that I could let these people guide my journey. 

What is the biggest professional challenge? How do you mitigate this challenge?

Anything that involves travel. I never know whether I will be able to find qualified accessibility services when I travel for conferences or other academic commitments. For conferences, my school has been terrific about having my regular academic ASL interpreters fly out with me: we have flown to New York, Los Angeles, and Vancouver together, and that guarantees that I can be fully involved in the important networking connections that are being made there. However, this is not a problem I have fully solved. I’m due to spend three months in Switzerland for a research exchange soon, and since they use a different sign language than mine, I wasn’t able to find local services. I’ve had to come up with more creative solutions; my current plan is to have my interpreters in Toronto Skype with me remotely for regular meetings, and I will have to see how this works out. But in general, I think about academic mobility a lot for disabled people. While a lot of my able-bodied peers are able to take jobs and opportunities anywhere in the world, I feel like there are more hurdles for me, and I’m trying to find ways to not let this limit the steps I can take in my career. 

What is an example of accommodation that you either use or would like to use in your current job?

I have an awesome accessibility plan with my school, which gives me “block times.” Three or four afternoons a week, I have an ASL interpreter present for any needs that might pop up: a collaborator or student showing up for a meeting, impromptu chats with my supervisor or colleagues, seminars that I learn about last-minute but seem interesting. The interpreter is booked regardless of there’s something happening or not, and if it turns out to be a quiet afternoon, she spends her time on prep or coordination. 

This accommodation has really made a massive impact on my success in my program and career. For example, it makes collaborations a lot easier: while I could book interpretation for each specific meeting happening, having to set a date three weeks ahead to confirm interpretation is a lot less convenient than a collaborator just dropping in with short notice to discuss how a project is proceeding. Similarly, I don’t have to devote a lot of energy into keeping abreast of departmental and campus events to be able to request interpretation ahead of time—I can spontaneously go to seminars as other graduate students mention them to me. It’s really leveled the playing field a lot in terms of how much time and energy I have to devote to being engaged and available as a scientist, compared to hearing people. 

What advice would you give your former self?

You work way better 9 to 5! I can’t believe how much more productive I became after I started sleeping 8 hours a night and giving myself more downtime—sometimes fewer working hours is more! 

Any funny stories you want to share?

I once helped host an ASL-interpreted theatre production. I taught the director how to say “thank you” in ASL, so she could wave goodbye to the community members I had invited as they were leaving the show. Unfortunately, between the start and end of the play, she forgot that the sign starts from the mouth, not the chin, and ended up signing “fuck you” all night… (People had a good sense of humor about it).

How much listening is too much?

– Michele

Listening is hard work. At the end of a long day of meetings I’m exhausted. When I share this with my hearing colleagues they’ll say “Oh, I know—me too!” But is it the same? Really? 

Studies have shown that users of hearing aids like me, who rely on speech reading along with amplification, experience listening fatigue as much higher rates than hearing people (e.g., Bess and Hornsby, 2014). We are working much harder than everyone around us to piece things together and make sense from what we are able to hear. Most listening fatigue studies are on school-aged children and the few studies of adults show that “Adults with hearing loss require more time to recover from fatigue after work, and have more work absences.” (Hornsby et al., 2016). As academics, our jobs require us to listen to others all the time—in our classes, in faculty meetings, in seminars, and when meeting with students. How do we recognize cognitive fatigue due to too much listening and mitigate this fatigue so that we can manage our work responsibilities? This is a tremendous challenge for deaf/HoH academics and The Mind Hears will explore this topic in several blog posts. 

In this post I share how I figured out my daily listening limit, which turns out to be 3 hours with good amplification and clear speech reading. For many years, I pushed through my day not paying attention to how much time I was spending in meetings and classes. Some days I felt okay while other days I ended up utterly exhausted. The kind of exhausted where I can’t track conversation and even have trouble putting my own sentences together. When this happens, I can’t converse with my family and exercise class is out of the question because I can’t follow the instructor. I just take my hearing aids out and lie on the floor with the dog— I don’ need to speech read him and he gets me. Yay dogs!  

When I explain to my listening fatigue to non-native English speakers, they get it right away. They recognize that this listening fatigue is just like when they first moved to a country with a new language; while they had good command of the new language, following it all day exhausted them. Exactly! Except I’m not going to get any better at my native language.

After a while—actually a really long while because for many years I tried to work as if I was a hearing person due to internalized ableism, which really is a whole different blog topic—and now this sentence has really gotten off track so I’m going to start over. After a while, I started to realize that for my own health I needed to avoid becoming so exhausted that several times a week, I could only commune with the dog.

undefinedIt turns out that my fancy new Garmin watch that tells me to “MOVE” every hour also detects my stress level. This image at left is from a day at a conference. All I did that day was sit in one room listening to talks with occasional breaks for coffee and meals. My heart rate stayed elevated all day due to the work of following the conversation and the anxiety of constantly deciding whether I should ask for clarification on something I may have missed or just let it go. When even my watch is telling me ‘enough is enough’ or more specifically “You’ve had very few restful moments on this day. Remember to slow down and relax to keep yourself going”, it might be time to figure out how much listening is too much

So last February I tracked both my hours each day spent listening and my evening exhaustion level in my bullet journal. 

Actually, I didn’t track this much detail—I just made marks in my bullet journal for each hour and then noted whether this was manageable. Below are two example pages. For the day on the left, the 3 Xs represent 3 hours of listening and this was an OK day. The image on the right is from another day that month. The horizontal line below the Xs means that I was on the floor with the dog that evening after 5 hours of listening. 

Yes, I know that my handwriting is messy and I tend to kick a lot of tasks to the next day. But this blog post is not about my untidiness and unreliability. What I learned from this exercise was that any day including more than 3 hours of listening would be a tough an unmanageable day. Armed with this knowledge, I could start to try to rearrange my schedule to avoid having days with more than 3 hours of listening. 

Interestingly, this goes against the advice that many academics give each other. Early career researchers are encouraged to push all meetings to one day so that you have a day free for research. This is great advice… for a hearing person. For many deaf/HoH, we may do better with two free mornings a week rather than 1 full day so that no one day is overloaded with listening.

So how successful have I been? Moderately. While I have control over some aspects of my schedule, I don’t over others. I schedule my one-on-one meetings with my research assistants on days that I don’t have a lot of other meetings. If I’m teaching a 3-hour lab, sometimes it’s just impossible for me to have no other teaching or meetings that day. But I am considering restructuring my lab activities so that I don’t need to be ‘on’ the whole time. I’ve also started talking with my department head about my effort to limit my daily meetings; this involves educating him on why listening fatigue is different for me than for hearing faculty. Had I been more savvy, I might have negotiated a listening limit when I was hired. Take note of this, future academics! 

I’m still sorting out how to manage my day and eager to learn more from others on how they successfully manage listening fatigue. As I mentioned at the start of this post, The Mind Hears wants to have a series of posts about listening fatigue. Tell us how has this fatigue affected your work day and your health. What solutions have you found?

References cited

  • Bess, F.H., & Hornsby, B.W. (2014). Commentary: Listening can be exhausting—Fatigue in children and adults with hearing loss. Ear and hearing35(6), 592.
  • Hornsby, B.W., Naylor, G., & and Bess, F.H. (2016). A taxonomy of fatigue concepts and their relation to hearing loss. Ear and hearing37(Suppl 1), 136S.

Profile: Dr. Stephanie Kerschbaum

Associate Professor of English, University of Delaware, Newark, DE, USA

Field of expertise: Writing Studies

  • Website
  • Twitter: @slkersch (although I rarely use it)

Describe your hearing: I wear two behind-the-ear hearing aids and speechread well in one-on-one and small-group settings. Due to years of childhood speech therapy, I use my voice to communicate for myself when conversing with hearing people and sign when around other signing deaf people.

Here’s me—in this professional head shot my short brown hair, red rectangular glasses, white skin, and many-toothed smile are readily visible, but my two behind-the-ear hearing aids are not. I have been deaf since birth. When I was about one, my parents learned I was deaf and my mom immediately enrolled us in parent-child sign language classes. I learned to sign before I could talk, but once I began talking, my mother reports that I largely stopped signing. 

I never completely let go of that early language learning, however—while I do not have deaf family members (other than those who have late-in-life hearing loss), I did attend a school with a significant population of deaf students from 5th through 8th grade, and began using sign language interpreters and CART when I went to college at The Ohio State University. I went to the University of Wisconsin-Madison to start graduate school in literary studies, but after taking an “Intro to Comp Studies” course as an MA student, ended up getting my PhD in Rhetoric and Composition.

I’m currently an associate professor of English at the University of Delaware, where I think a lot about different forms of writing and composing with and around disability as well as the ways that disability matters to all kinds of everyday experiences. I didn’t start focusing on disability studies until I was well into my first tenure-track job, though—it took me a long time to make explicit connections between my lived experiences of negotiating communication, interactional access, and building an academic career with the kind of theorizing I was doing around how people name and articulate differences—of all kinds—during everyday interactions. 

One of the biggest challenges that I face—and that is common to many disabled faculty members—involves building inclusive environments in which I can authentically and fully participate. By this, I mean situations where I can contribute in a timely fashion to an ongoing conversation or meeting in a way that enables others to attend to what I am sharing and incorporate it into the discussion. Too often, disabled faculty members experience environments where their participation is marginalized or mediated through interfaces, material arrangements, and patterns of behavior that frustrate rather than enable inclusion. 

In a room of 10 people I’m not likely to be able to completely follow a back and forth conversation without an interpreter. And even when an interpreter is in the room, I almost always still need to ask for some shifts in the interaction. Right now almost all of the responsibility for making those changes falls on me. So the hardest part is getting others in the room to participate in the work that is involved in making the kinds of changes needed.

An accommodation I’d love to have is actually an improvement on one that I already have and enjoy using. I love working with sign language interpreters. But there’s so much that goes on around making that work proceed well that I’d really like to have automatically be part of the experience: getting access copies of scripted remarks without having to go through complicated negotiations each time; well-structured processes for securing interpreting in which highly qualified interpreters well-trained in academic transliteration are readily available; having presenters, meeting organizers, and committee chairs consider interpreters’ needs when setting up rooms, sending out meeting materials, and more.

New Year’s resolution 2020: Make Your Workplace Accessible

The new year brings a fresh start to our lives; it’s a natural time to reflect on the year past and make plans for the coming year. At the start of 2019 The Mind Hears offered a post on making your academic workplace more accessible for your deaf/HoH colleagues. For 2020, we’ve updated the list of recommendations on the google doc and expanded below on the reasons why you should work to improve your workplace’s inclusivity today.

Universal design your workplace: Our spaces become more inclusive for all when we improve access for any subgroup of our community. Consequently, by increasing the accessibility of our workplaces for our deaf and hard of hearing colleagues, we create a better workplace for everyone. This includes hearing folks who have auditory processing disorder, use English as their second language or are acquiring hearing loss during their careers. Chances are that someone in your department has hearing loss, whether they’ve disclosed this or not, and will benefit from your efforts to make your workplace more accessible (see post on Where are the deaf/HoH academics). This is why you should universal design your workplace now and not wait until someone who is struggling asks you to make modifications.

Sharing the work: With a google search you can find several resources on workplace accessibility for deaf/HoH employees, such as the Hearing Loss Association of America’s (HLAA) very useful employment toolkit. One drawback of these resources is that nearly all of the suggestions are framed as actions for the deaf/HoH employee. While deaf and hard of hearing academics need to be strong self-advocates and take steps to improve their accommodations, our hearing colleagues can help us tremendously by sharing the work and not expecting us to bear all of the burden of creating accessible workplaces. Speech reading conversations, planning accommodations and making sure that technology/accommodations function is never-ending and exhausting work that we do above and beyond our teaching, research and service. Your understanding and your help changing our workplaces can make a huge difference to us.  For example, if a speaker doesn’t repeat the question, ask them to repeat even if you heard the question just fine. The people who didn’t hear the question are already stressed and fatigued from working hard to listen, so why expect them to do the added work of ensuring speakers repeat questions. Repeating the question benefits everyone.

One size doesn’t fit all: If a participant requests accommodation for a presentation or meeting, follow up with them and be prepared to iterate to a solution that works. It may be signed interpreters (there are different kinds of signing), oral interpreters, CART (see post on Captions and Craptions), or FM systems (see post on Using FM systems at conferences). It could be rearranging the room or modifying the way that the meeting is run. Keep in mind that what works for one deaf/HoH person may not work for another person with similar deafness. What works for someone in one situation may not work at all for that same person in another situation, even if the situations seem similar to you. The best solution will probably not be the first approach that you try nor may it be the quickest or cheapest approach; it will be the one that allows your deaf and hard-of-hearing colleagues to participate fully and contribute to the discussion. Reaching the goal of achieving an academic workplace accessible to deaf/HoH academics is a journey.

What to be a better ally and make your workplace accessible for your deaf and hard of hearing colleagues? Follow this link to read our list of recommendations. This is a living document and we welcome your comments and suggestions either to this post or directly within the document.

 

I owe my career to the invention of email

-Michele

The title of this post says it all, really. Several times a week I marvel at all the work communication that I can do now that would have been extremely difficult several decades ago. I earned my PhD in 1996. So, I remember the days of making physical presentation slides, where you had to use special film and rush to the developing place in order to get your slides produced before the meeting. I also remember searching the World Wide Web for the very first time. I realize that I’m dating myself in these reminisciings and you are probably impatient with me to get to the point.

Email was around when I was in graduate school, but, at that time, most professionals relied on phoning each other to exchange ideas and get information. At my request, the Dean’s office of my graduate school installed a TTY for me to use for making professional phone calls. I used it a few times and I was very grateful that the captionists relayed voiced information so that I didn’t have to piece together the message from fragments heard on my amplified phone. For example, I used this for some job interviews (see our post on disclosing deafness in job search).

Around my third year of my PhD, I was also having serious doubts if an academic career was for me. This is not uncommon for any graduate students but my deafness exacerbated a sense of not belonging in academia. I didn’t know any deafened professors or researchers. How does one have a successful academic career with deafness? How will I follow discussions at meetings? How will I hear my students’ comments? How will I communicate with colleagues on the phone?

I’m still asking some of these questions and The Mind Hears blog is doing a great job of probing these questions (e.g., teaching large classes post). Fortunately, the last question is now moot. Email allows us to communicate with colleagues, exchange ideas and get questions answered. I don’t have to worry about how my voice sounds or whether I can hear folks. I don’t have to fuss with the complications of the relay service, though I still use my new captioned phone when necessary.

Do I ever miss being able to use the telephone? Heck no! I far prefer email or talking in person than using the phone. Recently Ana and were chatting with a hearing person and they suggested that we contact someone by phone. Ana and I looked at each other and I could tell from her face that she was thinking the same thing as me. A combination of “Ew! Why use the phone when you can email?” and “Eek! Don’t make me use the phone!”.  When I need an answer from someone on my campus, I take the opportunity to stroll over to their office.  Sometimes I get asked “Why didn’t you just phone rather than walk over here?” I laugh and say “It’s good to get out and about and besides, now I’ve had the chance to visit you.” If I choose to, I can use these encounters as opportunities to talk about my deafness. But honestly, the work of educating the hearing community is draining so I prefer to have some control over when and where educational moments occur.

I marvel that while I’ve met many deaf and hard of hearing academics that are younger than me, I’ve not yet met one older than myself who has navigated an academic career with significant deafness (i.e., not age related).  I wonder if this is because I was the leading edge of the email revolution that changed the way academics communicate. Academics even a few years my senior had to rely on telephones for networking. The thought of that makes me deeply appreciative of starting my academic career when I did. What an amazing and empowering time this is to be an academic! I’m grateful for the luck of living on this side of the email revolution. Thank you email!

So, I will end with this Haiku:

    The telephone sits on my desk
    Gathering much dust
    While I type and weave science

P.S. The increasing utilization of remote video conferencing is presenting new challenges for us deaf and hard of hearing academics. Who wants to contribute a The Mind Hears post on navigating these settings?