Category Archives: advocacy

To Hear, or Not to Hear? The Mental Gymnastics of Hearing Device Use

A word cloud showing the most common appearing words in the post in different colors.
Alt text. A word cloud showing the most common appearing words in the post in different colors.

-Sarah Sparks

I had planned to write this post about listening fatigue, but as I began writing I realized that a related yet rarely discussed topic resonated more in the moment. This post is my attempt at addressing the complexity of that topic.

The mental gymnastics involved in deciding whether and/or when to use hearing devices is not discussed often—at least publicly. This can be an uncomfortable topic because the decisions about amplification use made by deaf and hard of hearing people have an impact on how we are viewed within our professions, the willingness of other people to take our accommodation needs seriously, and the assumptions made by others about our communication needs and preferences. Ideally, decisions about amplification use should be made freely. That doesn’t always happen in the context of an audist society. Some might argue that because of audism (the belief that hearing and speaking are superior to deafness and signing, and the consequent discrimination), none of these decisions are ever truly free.

I am against audism in all its forms, and I also believe it is possible to genuinely like and want amplified sound for its own sake, not because of attempts to assimilate to the hearing world. But perhaps more often than we would like to admit, deaf and hard of hearing (HoH) professionals who use hearing devices make decisions about device use based on what others expect rather than what feels best to us as individuals. 

I identify as deaf. I am a full-time, bilateral cochlear implant (CI) user who also communicates in and loves both American Sign Language (ASL) and English. In times past I would wear my CI processors from the moment I woke up in the morning until about an hour before going to bed at night, sometimes topping 18 hours of device use in a day. That was exhausting, and I’m glad that I have since found a CI use pattern more suited to my needs. These days I am still a full-time CI user in that my device use averages approximately 8 hours per day, but rarely do I use my processors outside of professional situations. I’m a pediatric audiologist, and I work with many hearing children and their parents as well as the hearing parents of deaf and hard of hearing children. I care about communicating with all of them in their native language whenever possible. Because of this, my processors go on as soon as I walk into clinic in the morning and they come off as soon as I’m on my way home in the evening. If I have class or a meeting in the evening, generally I will keep them on for that purpose. 

Mostly, I’m comfortable with my current CI usage. But my choices come with unique kinds of personal and professional costs that affect neither hearing professionals nor deaf professionals who don’t use devices. The decision to use my CIs as frequently (or infrequently) as I do has a downside that I don’t discuss often: the constant need to evaluate why I use them (or not). Every day, I notice how my decisions interact with others’ conscious and subconscious expectations for me not just as a deaf person, but also as a person with auditory access. Confident as I am in my decisions to switch up my communication—ASL, spoken English, or written English depending on the situation—often I find myself wondering about my CI use pattern and messages that others may infer, independent of anything I say directly.

Does using my CIs full time lead others to believe that I value spoken language over signed language? Maybe I need to clarify every other day that I love ASL and that spoken-language access isn’t the only reason I use my CIs…

Do my coworkers and other acquaintances see my CIs and assume that if my processors are on, they should always speak instead of sign? Maybe I should use my processors only when I want people to speak to me, but then I wouldn’t get to use them for many of the sounds I genuinely want to hear…

How does my CI use impact the willingness of employers and conference/event organizers to fulfill requests for accommodations? In the past, people have heard the clarity of my speech and thought I was exaggerating when I described the limits of my CI hearing. Maybe I’ll have to explain for the thousandth time that my speech is so clear because I wasn’t born deaf, lost my hearing progressively, and don’t hear nearly as well as I speak. Maybe this is why some deaf professionals who can hear and speak choose not to…

If I prefer to speechread my way through certain kinds of interactions, am I leading others to believe that I don’t need visual language? Maybe the access problems I experience are my own fault for opting to communicate in two languages…

If I remove my CI processors for a few hours while among colleagues in my profession, will they see me as irresponsible and make wrong assumptions about how I counsel my own CI patients? Maybe they’ll lose trust in me as a clinician or researcher and assume that I’m recommending lackadaisical or capricious device use…

My signing is clearly non-native: if I’m around other deaf professionals, is wearing my processors (even without batteries) necessary to remind them that I’m not a hearing person? Maybe they’ll see me as just another hearing audiologist if I’m not wearing them… or despite my wearing them…

Are my CIs sending the message that deaf/HoH people can be audiologists and hearing scientists only if we use CIs? Maybe I’m hurting someone else’s opportunities unintentionally just by trying to be deaf in the way that feels most okay for me…

What message does my observable CI use pattern send about deaf/HoH professionals who don’t use hearing devices at all or use their devices differently than I do? Maybe my own decisions affect whether they can get their access needs met…These are just a few of the questions that come to mind when I’m deciding whether to turn on my artificial, electronic auditory access. Needing to think through these and other costs of my CI use pattern is almost as exhausting as listening fatigue itself. Multiple times a day, I have to decide which is more important: using my CIs in the ways that feel best to me, or using them in ways that are least likely to result in negative consequences for me and other deaf/HoH professionals. Every day, I have to decide which battles I’m willing to fight and how my choices about CI use affect my ability to do so. I know that I can’t be the only deaf CI user who struggles with navigating these concerns both inside and outside of academia.

A dark haired woman, with hair pulled back and dark-framed glasses is smiling. She wears a dark colored blazer and has a cochlear implant.
Alt text. A dark haired woman, with hair pulled back and dark-framed glasses is smiling. She wears a dark colored blazer and has a cochlear implant.

Dr. Sarah Sparks: Dr. Sparks holds a clinical Doctorate in Audiology (Au.D.) from Gallaudet University. She has experience in a variety of clinical settings, including a university clinic, private practice, school for the deaf, and two pediatric hospitals. She completed her final year of clinical education at Boston Children’s Hospital where she also held a fellowship in the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program. She is currently studying at Gallaudet for a Ph.D. in Hearing, Speech, and Language Sciences. Her clinical and research interests include pediatrics, vestibular assessment and rehabilitation, cochlear implants, the audiologist’s role in counseling and self-advocacy skill development, and audiology services provided in American Sign Language. Her Ph.D. dissertation research will focus on vestibular dysfunction and its impact on deaf/HoH children.

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.”

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.

Under-represented: Where are all the deaf and hard-of-hearing academics?

-Michele

Through working on The Mind Hears since Sept 2018, I’ve had the chance to meet some amazing deaf and hard-of-hearing scholars and researchers.Our backgrounds, areas of expertise, degrees of hearing, and jobs differ.But one very common experience for deaf/HoH at mainstream institutions (i.e. not at a primary deaf/HoH university), is thae lack of mentors who are deaf/HoH. This isolation drove us to start the blog. But our common experiences lead to the question: Where areall the deaf and hard-of-hearing academics?

The American Speech Language Hearing Association classifies degree of hearing loss on a scale of mild (26-40 db), moderate (41-55 db), moderately severe (56-70), severe (71-90), and profound (91+) (ASHA). Despite these straight-forward definitions, understanding the statistics on hearing loss requires nuance. While tests prove that many people have some degree of hearing loss, only a subset of these folks wear hearing aids or use signed language; even fewer request work accommodations. The National Institute on Deafness and Other Communication Disorders, part of the federal National Institutes of Health, reports that 14% of the working age adult population aged 20–69 has significant hearing loss (Hoffman et al., 2017). This 14% report a greater than 35 decibel threshold for hearing tones within speech frequencies in one or both ears (NIDCD). The number of people with high-frequency hearing loss is double the number with speech range loss (Hoffman et al., 2017). However, not hearing watch alarms or computer keyboards is not considered to be as impactful as missing speech range frequencies.

As Figure 1 shows, the statistics on hearing loss are further complicated by age, which correlates with incidence of hearing loss. Among folks aged 60–69 years, 39% have hearing loss (Hoffman et al., 2017). Within the larger disabled community, we crips joke that we are a community that can recruit new members. Joking aside, the reality is that if you are a hearing person reading this, there is a very good chance that hearing loss will affect you or someone close to you during your working lifetime. The Mind Hearscan be a valuable resource for folks with newly acquired hearing loss.

hoffman age
Figure 1: Modified from Hoffman et al., 2017

So where are the deaf and hard-of-hearing academics? Doctoral degrees are generally awarded to academics between the ages of 20 and 29; the incidence of significant hearing loss within this population is 2.2% (Hoffman et al., 2017). The National Science Foundation’s annual survey on doctoral recipients reports that 54,664 graduate students earned PhD degrees in 2017 (NSF 2017)—wow, that represents a lot of hard work! Great job y’all! Now, if the graduate student population resembles the general population, then we should expect that 1202 of those newly minted PhDs are deaf/HoH. Instead, the survey reports that only 654 PhDs, or 1.2%, were issued to deaf or hard of hearing people (NSF, 2017). This suggests that deaf/HoH PhDs have half the representation that they do within the general population.
Furthermore, the distribution of deaf/HoH PhDs is not even among the fields of the NSF doctoral survey. In 2017, as shown in Figure 2, each of the fields of Humanities and arts, Education, and Psychology and social sciences has a greater percentage of deaf/HoH than each of the fields of Engineering, Life sciences, Physical and earth sciences or Mathematics and computer sciences. It seems like I’ve heard of greater numbers of deaf/HoH scholars and researchers in the fields of Deaf Studies, Deaf Education and Signed Languages Studies than in other fields. This could impact the distribution. Or perhaps some fields are more friendly to deaf/HoH scholars and researchers. Nevertheless, deaf and HoH are underrepresented in all fields within scholars and researchers with PhDs.

2017 stats

So, what can we do? These numbers reveal why so many of us feel isolated in our experiences within academia. The Mind Hears is one effort to facilitate networking and raise awareness of inclusion issues for deaf/HoH academics.

References

American Speech-Language-Hearing Association. Available at https://www.asha.org/public/hearing/degree-of-hearing-loss/

Hoffman HJ, Dobie RA, Losonczy KG, Themann CL, Flamme GA. Declining Prevalence of Hearing Loss in US Adults Aged 20 to 69 Years. JAMA Otolaryngol Head Neck Surg. 2017;143(3):274–285. doi:10.1001/jamaoto.2016.3527

National Institute on Deafness and Other Communication Disorders (NIDCD), Available at https://www.nidcd.nih.gov/health/statistics/quick-statistics-hearing.

National Science Foundation, National Center for Science and Engineering Statistics. 2018. Doctorate Recipients from U.S. Universities: 2017. Special Report NSF 19-301. Alexandria, VA. Available at https://ncses.nsf.gov/pubs/nsf19301/.

Why the world needs another blog

— Ana and Michele

We are two deaf/HoH tenured scientists at the University of Massachusetts in Amherst, and this summer we decided we needed to create a blog.

For Ana it was the cumulative frustration of feeling that after almost 12 years of teaching, she often still struggled with the same instructional challenges that had bedeviled her at the beginning of her career. For Michele it was a realization that she had shed her fear of having her hearing loss define her professional image as a research scientist. For both of us, it was a wearying sense that for too long we had each been re-inventing the wheel—continuously looking for solutions to problems that we cannot possibly have been the first or only ones to experience. “If only we had other people like us to talk to and exchange ideas with,” we thought. “Faculty who also fret about the best way to introduce their hearing loss to their students; postdocs who also have to worry about how to handle the soft-spoken person in the back row asking a question after their talk; grad students who are also trying to crack the code on how to be full participants in fast-paced journal clubs.” In the past, we had individually (and unsuccessfully) searched for blogs by deaf/HoH people working in academic settings that shared their experiences. This summer it finally dawned on us that we could create our own.

“But wait a moment!” you may ask. “You both work in the same institution—surely you talked to each other and exchanged strategies for success?” We’re somewhat embarrassed to admit that in all of our years of overlap at UMass, we actually didn’t engage that much with each other. The reasons for this are varied and nuanced and may be good sources for future blog posts. When Ana mentioned the idea of a blog to Michele a few months ago, we both instantly realized, this is it. We need to do this! We are on a mission, because people like us need this blog! So, despite all the myriad other demands on our time, we are making a blog.

Our aspiration is to create a forum for discussing the unique challenges shared by deaf/HoH professionals in an academic environment. We have two main objectives: first to build a network of academics with hearing loss from all career stages and from a diversity of fields. Through this network, our second objective is to share experiences, failures, and, most importantly, potential solutions to the professional challenges we encounter.

People with hearing loss make up 15% of the adult U.S. population, with likely similar percentages worldwide, but the proportion undeniably becomes smaller in academia. Because of our small numbers, our best shot at creating a community is online. The community we are gathering runs the gamut of experiences. It encompasses people who are recently deafened to those who were born deaf; those with mild hearing loss to those who cannot hear any sounds; individuals who communicate primarily through sign languages and those who do so verbally; academics in predominantly-hearing institutions and those at Deaf-serving institutions; graduate students initiating their careers, postdocs questioning their next step, and senior faculty who can impact academic culture; deaf/HoH people working in every academic discipline; academics in countries with abundant accommodations for deaf/HoH individuals, and academics in countries with more limited resources. Because the hearing loss experience is so variable and affects each of us in different ways, our best bet at finding solutions and workarounds to the challenges we each face is by including all of our diverse experiences in this shared forum.

We need to come together because being a person with hearing loss in an academic environment is hard. The daily exhaustion of communicating in non-ideal settings, anticipating and planning for future communication challenges, educating unaware individuals, and dealing with the social isolation resulting from communication challenges can drain us of energy, ambition, and time. We will blog about these challenges! While there is comfort in sharing stories and realizing that others are going through similar experiences, we aspire for this blog to transcend being merely a “complaint forum.” Instead, by sharing various ways that we approach different challenges, we hope to build a community toolbox of solutions.

If you are a deaf/HoH academic, please consider contributing blog posts or becoming involved in the discussions. If you know of a deaf/HoH colleague, please spread the word about our blog and help us grow our network. If you want to learn more about the deaf/HoH experience, ask questions and follow this blog. You can help TheMindHears strengthen its impact so that it provides value to each of those who visit.