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. In what is becoming a The Mind Hears New Year tradition (see posts from 2019, 2020, and 2021), we have updated our list of recommendations for making your workplace accessible. You can view and download the full list of recommendations for making your in-person and remote workplaces accessible for your deaf and hard of hearing colleagues at this link. Below we provide an outline of the best approaches for increasing workplace accessibility and provide links to blog posts that explore particular aspects in detail.
Universally 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 (see post on the impact of the Mind Hears). 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 universally 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 (see post on making an impact at high stakes conferences, post on conquering faculty meetings, and post on teaching very large classes). Your understanding and your help changing our workplaces can make a huge difference to us. For example, if a speaker doesn’t repeat a 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 (see post on listening fatigue and post on the mental gymnastics of hearing device use)? Repeating the question benefits everyone. The changes you make today can also help your workplace align with equal opportunity requirements for best hiring practices (see The Mind Hears blog posts about applying for jobs when deaf/HoH hereand here).
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 (see post on working with sign interpreters and post on networking with deaf colleagues who use interpreters), 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.
Want to be a better ally and make your workplace accessible for your deaf and hard of hearing colleagues?Follow this linkto read our list of recommendations. We welcome your comments and suggestions either to this post or directly within the document at this link.
The last year required a myriad of adjustments in our professional lives. For those of us in academia, much of it entailed moving our teaching and service to remote format. The pandemic isn’t over, but many universities around the world have taken steps to return to face-to-face operations. When the current semester started, we, Ana and Michele, shared notes on what aspects of remote teaching and remote working went well for us, and which we hoped to keep no matter what mode our future work takes (e..g in-person, hybrid mode, or remote; masked or unmasked). Because we experienced many of the same struggles and benefits, we haven’t attributed our experiences and discoveries to a particular person.
Switching to remote work mode in 2020 and 2021 forced us to shake up our teaching, making us re-examine our class content and many of our class practices (see our post on accommodating a pandemic). This push towards innovation left us with several practices that we wanted to bring back with us from the pandemic — some because they are helpful with our deafness, but others simply because they seem to improve the pedagogy of our courses.
Zoom office hours can be more accessible and more inclusive than in-person office hours. Though in-person conversation always provides greater connection, students appreciate being able to drop in with a question from wherever they are, instead of making the trek across campus to our offices. This ease of access meant they are more liable to come even if all they have is a small question. Also, if we are zooming from private spaces we don’t have to wear masks, which allows speech reading (see our post on navigating masked world) – with this and auto-captions enabled we are able to follow conversations often better than we could in person.
Going online forced us to explore and use the tools available in our class management software, which we had resisted exploring fully before, primarily due to inertia. We found that we could offer better feedback and grade more equitably assignments submitted online. For example, messy handwriting is less of an issue with online assignments. We could also come up with more creative ways for students to engage with the class content and work together (e.g. challenges that involved students taking pictures of themselves with class-related content; collaborative jamboard tasks). Previously, we had over-relied on the standard think-pair-share and we found that jamboards opened new ways of having students work together. We could even set up a break-out room for folks who prefer to work on their own, rather than having them feel obligated to work with their chatty neighbor. For seminar style courses, one of us started using Perusall for reading assignments where students post questions and can comment on the questions of others. Having those discussions beforehand meant that students came to the seminar ready to engage with the material more deeply. We have continued to make use of several of the class management tools we discovered while in-person this semester.
Inertia had also prevented us from previously trying a flipped classroom approach. But in order to provide both synchronous and asynchronous learning opportunities for students while fully remote, we were essentially “forced” to flip our classroom for the first time. We discovered that we really liked it! Students seemed much more engaged/aware when they came to class having previously watched one of our videos on the topic being covered that day. We had assigned readings in the past, but it seemed like most students never read the assignments. The combination of pre-recorded videos with a required follow-up quiz led to much better questions in class and also less of a rush to try to fit a given topic within a class period, and we have continued using a flipped approach for our in-person classes this semester.
Because engaging remote students to participate was more challenging than being in-person, we started using anonymous polling. Anonymous polling tools, such as the Zoom poll, Mentimeter and Poll Everywhere, provide a powerful way to engage students. During remote teaching, we found that these anonymous polls allowed students who might have otherwise been uncomfortable to raise their hand to express their opinions. We have now tried to use some of these tools for all courses, whether in-person, hybrid or remote.
Several platforms allow written questions during live lectures. You provide a URL to the audience and they can then access a Q&A forum from their smartphones or laptops. For deaf/HoH instructors, this provides a way to understand student questions in large courses. Even before indoor mask requirements, we would struggle to understand questions or comments from folks beyond the first row (see our post about teaching large classes). One of us has experimented with receiving questions this way using Google Audience Tools in her large (~230 students) in-person lecture class this semester; in fact, this has been the strategy that has made it possible for her to interact with masked students at all . Allowing anonymous questions to be submitted has yielded more student questions, while reducing communication barriers for us as deaf/HoH instructors. It would be great to see more live presentations take advantage of this functionality and discover ways to incorporate audience/student responses to each other too.
All of the benefits and drawbacks of remote teaching also apply for remote meetings. It can be difficult for deaf/HoH folks to follow in-person meeting discussions, and when we are leading meetings we often miss what folks contribute, which can erode the flow of meeting discussions, as it does the classroom discussions.
Faculty meetings are notoriously deaf/HoH unfriendly (see our post about faculty meetings) and during the period of remote work, we were able to participate more fully. The ability to see colleagues’ faces while talking and combination of auto-captions and generated transcript (once our institution actually purchased the zoom auto-captions option) did make it easier to follow the entirety of zoom meetings. We have fortunately continued to have remote faculty meetings this semester. One of us has had one masked in-person faculty event; at this in-person event she felt herself drift into the background, as in pre-pandemic times when speaking would reveal we had missed part of the conversation.
We have mixed feelings about advocating to never have in-person faculty meetings again. The chit-chat before and after meetings improves department cohesion. The shared laughter or groans in response to lighter moments or bad news helps camaraderie. At the same time, we recall so many times when we heard folks laugh and wondered what joke we had missed. We feel that we participate more equitably in zoom meetings than for in-person faculty meetings. Going forward, in-person meetings could be alternated with remote meetings in order to harness the benefits of both meeting modes.
Pre-pandemic, committee meetings often involved scrambling to get across campus in time for the start of the meeting. Being able to participate from our offices or homes remotely, meant not only that the meeting was easier to follow (see comments above), but we also avoided missing the first few minutes in the hustle across campus. We’ve also been participating in a greater number of professional committees with folks at other universities and even from other countries. In the before-times, such committees might have met in person during one or more of the disciplinary conferences. Now that we can meet more regularly over zoom, we find this committee work to be more effective and rewarding. Maybe this is also because we can participate more fully in the remote mode than we could in person, where we were already exhausted from listening at the disciplinary conference. We have even found that the auto-captions can help us to some degree in understanding people with unfamiliar accents (see our post about unfamiliar accents).
Research collaboration meetings
Being able to share screen and annotate on the screen allows for some research discussions to follow more smoothly than in-person. Sometimes, when a group is huddled around one computer, they can’t see the screen and they end up pointing vaguely to try and describe something. The annotate tool makes it clear what folks are pointing to and still allows everyone to add to the conversation. However, one drawback of remote research meetings is that drawing with a computer mouse is horrible clunky compared to a pen on paper or whiteboard. Another benefit of remote research meetings is that our research collaborations with folks at other institutions has strengthened, as we have regular remote meetings to discuss on-going and potential projects. With captions available for remote meetings and video for speech reading, we are able to participate fully in ways that teleconference research calls did not allow pre-pandemic. The same is also true for journal club type seminars that discuss a research paper.
Invited Speaker Seminars
With the return to face to face instruction some of our seminar presentations from visiting scholars have been in-person and some hybrid or remote format. We have found that remote seminars continue to be of overall benefit, allowing us to invite distant speakers, leading to greater geographic representation. In-person seminars with and without masks have always been challenging for deaf/HoH folks. Allowing for hybrid seminars with auto-captions increases accessibility for deaf/HoH academics, but seminar hosts and/or speakers have to be cognizant about repeating audience questions to make these available to those online. What about when we have been invited to give seminars elsewhere? Given the current reality of masking indoors and the challenges this poses for our ability to speech-read our hosts and audiences, to date we have only accepted remote speaking invitations.
Academics, by nature, tend to resist changing the way we work. Our research and scholarship builds on the previous work within our disciplines. We don’t reinvent our disciplines with each new study. Experiments only change one parameter at a time in order to learn how systems work. Unless there are external factors, our tendency is to work the way that we have in the past. Data can point to better practices that slowly shift how we work over time and with slow incremental changes. While our survivorship bias leads us to make only small changes to what has worked in the past, what worked in the past for meetings and teaching was not inclusive to everyone. The covid-19 pandemic forced an overhaul of how we work. Within weeks, we adopted new approaches that otherwise might have taken us years to try. The pandemic crisis also provides a phenomenal opportunity to assess the way that we work and make wholesale changes that improve inclusion and access.
Rather than returning to the old normal, we advocate for moving forward to the new normal. This new inclusive normal uses effective practises from in person and remote teaching and meetings. We would love to hear from others on “best practices” that they have brought back with them from their pandemic experiences.
Current Title: Associate Professor of Writing & Rhetoric, Syracuse University
Field of expertise: Rhetorics of Technology
Years of experience: 16
What is your Background?
I became severely/profoundly deaf after a bout of spinal meningitis at the age of 2. I was fitted with hearing aids and sent to regular speech therapy sessions quickly after my parents discovered my deafness. My educational path has been twisty, largely due to having been what would now be called “twice exceptional.” I began my education in Montessori prior to getting sick, but the school was not welcoming when I was able to return. From there, I went into the Arkansas public school system, where pre-school and kindergarten classes grouped all the children with disabilities together with two teachers. My mother advocated for me to move to mainstream classes, where I moved for part of kindergarten and on through second grade. The following year, I skipped third grade and spent fourth and fifth grades as a scholarship student at a wealthy, private K-8 school. Then I moved to a private religious school for sixth through eleventh grades, dropped out early because the school wouldn’t consider early graduation, and got myself admitted to the local state university, which had an open admissions policy. There, I made it for a couple of years, dropped out to work for a while, then returned and finished my BA while working full time. I realized that I really liked school a lot more than I liked my job, although the job’s tuition reimbursement program paid for the rest of my undergrad work, and I noticed that professors got to keep going to school forever. To be a professor, I clearly needed a doctorate. So, I quit my job the same week that I graduated with my BA, got an MA at the same university, and then moved out of state for my PhD. I had no accommodations during any of my education and really had no idea what might be available, aside from sign language interpretation. And since I never learned to sign, that wasn’t really an option.
How did you get to where you are? For example: How did you decide on your field? How did you decide to pursue a higher degree in your field? What concerns did you have when you started out?
My mother was a writer and I always wrote with her, first with crayons and then with our Atari computer. It was just always something I did, and I started publishing as a teenager in local venues. So, it was natural to double-major in English and Professional & Technical Writing and then to continue to focus on Writing Studies and Rhetorical Studies through my grad work. As someone who had become very distanced from their own deafness, I had no concerns about my own education when I began, no awareness of listening fatigue or its impact. I had some worries about whether or not I could teach in a traditional classroom, but through happenstance I began my teaching career in online learning environments. I just assumed that this was the wave of the future and that I would continue doing most if not all of my teaching online — something that turned out not to be true until the pandemic hit.
What is the biggest professional challenge (as educator or researcher)? How do you mitigate this challenge?
My biggest challenge happened on the tenure track, when I had ideas, archival research, and arguments, but was largely unable to get my writing done while in a research-intensive job. After teaching entirely in face-to-face classrooms with students from the northeast whose accents were unfamiliar to me and then attending a variety of faculty meetings and talks, I simply didn’t have the energy left to think in ways that facilitated writing my tenure book. At the same time, I was developing advanced degenerative arthritis that went undiagnosed for longer than it should have. It took a while for me to understand that this amount of listening was causing significant listening fatigue or that a mix of listening fatigue and chronic pain will almost certainly short out one’s thinking capacity, that I could negotiate accommodations, or what accommodations might be useful for me. And as someone who had relied on passing for most of her life and knew no other deaf professors, I had no community to rely on for answers. Now that I’ve spent 6ish years sorting through internalized ableism, building community, setting limits on how much listening I do each day, negotiating accommodations through the ADA office, and educating my colleagues about CART and my availability, my research productivity has skyrocketed.
What is an example of accommodation that you either use or would like to use in your current job?
I use CART at all talks and large faculty meetings, teach in a variety of modalities (face-to-face, hybrid, and online), and schedule listening breaks throughout the day. To help manage chronic pain, I’ve arranged to teach in my own building or those right next door to it and moved my parking space. Our campus ADA Advocate has been an invaluable resource for negotiating all of this.
What advice would you give your former self?
Look for other people like you. Talk to them. Don’t feel like you have to do this alone.
Any funny stories you want to share?
Working with my last smart hearing aid, a Starkey Halo, led to a whole new research trajectory on algorithmically driven medical wearables. One of the moments that got me there is hilarious. The hearing aid was so new that I hadn’t yet changed the first battery. I was home alone on a dark and stormy night, prepping a chicken for roasting. Suddenly, a male voice said “Battery!” right in my ear and let me tell you, that chicken went flying. That was how I learned that the aid would talk to me when its battery was dying, which led to a host of questions about user interaction, why the default voice was white, male, and American, and other cultural aspects of this particular design.
I can pass as hearing. With good lighting, low background noise, and a good night’s sleep I can follow and participate in small group conversations like any hearing person. Like nearly all deaf/hard of hearing (HoH), my ability to listen, speechread, and follow conversations decreases quickly with less light, accrued listening fatigue of the day (see post on How much listening is too much?), more background noise, additional people with quick back-and-forth banter, or unfamiliar accents (see post on Understanding unfamiliar accents). I’m also pretty good at bluffing.
<garbled speech>… nod and smile<garbled speech>Ho! The group is laughing now. Laugh a little — but not too much
<garbled speech>nod and smile …
I don’t sound as deaf as I am because of years of speech therapy to teach me how to pronounce sounds that I can’t hear. The message speech therapy delivers is that the deaf/HoH folks should work hard to sound as hearing as possible. The burden is on the disabled person to assimilate rather than for hearing folks to tolerate deaf accents (see post on Eloquence is Overrated). Until I met other deaf/HoH folks in graduate school, I bought into that myth. I worried a lot about how I spoke, and my own internalized ableism fueled the myth that if I just worked hard enough nobody would know about my deafness. I could overcome my disability. My view on speech has changed over the years and I now find deaf accents wonderful/familiar/comforting. Though I will admit to still having some worries about my speech when I give high-stakes presentations —that internalized ableism is a tough beast to tame.
So, the combination of my slight deaf accent, excellent bluffing skills, and the privilege of being able to follow well-lit conversations with low background noise may be why people sometimes seem to either doubt my declarations of my deafness or underestimate my degree of hearing loss. Most of the time I don’t really care how my hearing is judged, but every now and then folks decide to call me out for what they perceive as inconsistency between my acting like a hearing person and my statement of my deafness — they will say “You don’t sound deaf”, or they will even try to test my hearing. Their nosy and inappropriate questions remind me of a hearing test that I failed the summer before my senior year of college.
I was hired by a mining company to participate in secondary gold exploration in northeastern Nevada. We lived and worked in a camp several hours from the nearest town. My field partner and I were hired to collect and log the rock cuttings (broken bits of rock produced by drilling) from various prospects within the claim. If we saw some promising cuttings, we sent them off to be assayed for their gold content. The mining company was hoping to find some high-grade Carlin-type disseminated gold that would make it worth setting up a mine in this remote high desert locale. Spoiler alert: We never did find good enough gold at that location. But the company paid us well for that summer of exploratory work. This job meant that my field partner and I got to hike around in the rattlesnake infested high desert every day to retrieve cuttings from the drill sites. The drillers would move the rig every week or so to a new site that we had previously marked for sampling. I mentioned to my co-workers that I couldn’t hear rattlesnakes and ask them to warn me if they heard a rattle when we were moving though the brush. I also took care to stomp the ground when I ventured someplace craggy where rattlesnakes might lurk. While I knew that rattlesnake bites were treatable, I didn’t relish the idea of an emergency 2+ hour drive to the nearest medical facility.
After one long day, I was in camp and standing around chatting with my co-workers (my field partner and the camp cook) and suddenly their eyes opened wide and their mouths formed startled “O”s. They were stunned and clearly were no longer listening to whatever fascinating and captivating story I was talking about at the time.
“Look behind you!”
I turned around and 5 inches from my face was a writhing burlap bag. The bag was moving in all sorts of directions consistent with a bagged and very angry snake.
The drillers had decided to test my hearing loss and caught a rattlesnake in the bag. They wanted to see if I really wasn’t able to hear the snake. While I was babbling away, they snuck up behind me and held the bag inches from my head waiting for my reaction.
I learned a couple things from this. #1 Never trust drillers. #2 This experience also taught me that my lived experiences aren’t appreciated by most hearing people and some of them won’t trust my own assessment of what I can and can’t do. Sometimes they will test me to see if I’m ‘for real’. “Can you hear me if I cover my mouth?” Sometimes they will doubt my abilities. “You can’t accept this job because it involves visiting construction sites with heavy equipment that you won’t hear.” Sometimes, they will presume what accommodations I need without asking me. “Zoom has auto-captions, so I figured you were all set.” It is no wonder then that sometimes it is easier for deaf/HoH not to disclose their deafness and thereby avoid dealing with inappropriate responses. If we just work hard enough, we can pass for hearing and no one will know or ask anything.
But not disclosing my deafness isn’t safe for me. Not disclosing and working hard to pass as hearing is harmful to me in that I’m doing a lot of work just to stay in place and that impedes my ability to thrive. Just like I benefit from my field partner calling out to me when they hear a rattle, accommodations in my academic career allow me to participate more fully and avoid both harmful misunderstandings and grueling listening fatigue. This rattlesnake-in-a-bag experience prepared me for an academic career where my colleagues, fellow data loving scientists, want to see direct evidence of my invisible disability.
So, when I’m asked inappropriate questions about my deafness, I picture in my mind that writhing burlap bag. I’ve got this — after all, you are the one holding a bag with a pissed off rattlesnake.
The Mind Hears was excited to learn that Anne and Breanne are two deaf graduate students in the same School of Integrative Plant Sciences. So many of us navigate graduate school as the only deaf student in the university, much less the graduate program. So we caught up with Anne and Breanne to explore how having a compatriot in graduate school has impacted their experiences. We asked them these questions:
Breanne: I am a PhD candidate in Plant Pathology at Cornell University, and am researching the population genetics of a fungus that causes powdery mildew of grapevine. I have loved science since I was a little girl, and was inspired to pursue sciences due to all of the different rare diseases that have occurred in my family. I’ve always been fascinated by infectious diseases and molecular biology, and the idea of translating that to plant diseases and protecting our crops was very exciting to me for graduate school. I identify as DeafBlind, and was born in New York State with moderate to severe hearing loss; I lost my vision as a teenager due to the recessive genetic disorder known as Usher Syndrome. I began using ASL to communicate during my undergraduate years at RIT/NTID, but have since lost those skills. It has been hard being apart from a deaf community for so long.
Anne: I am a PhD candidate in Horticulture at Cornell carrying out research in viticulture, by evaluating impacts of canopy management practices on above and below-ground parameters in grapevines. I’ve always been very passionate about fruit crop production and hope to go into extension, to teach students in the vineyard or orchard about management practices, to develop my own teaching videos on all things fruit crop and wine related in ASL, and one day, possibly to own a farm winery. I was born profoundly deaf in Connecticut and grew up with SimCom (Simultaneous Communication), initially learning SEE (Signed Exact English), then later, ASL, when I improved my fluency during my postgraduate years in Colorado.
Tell us about your discovery that you were not the only deaf student when you started your graduate program.
Breanne: Day 1 during the School of Integrative Plant Sciences (SIPS) graduate school orientation I was wondering, “why does the interpreter keep looking at someone else?” If only you could hear my thoughts that day; I was so shocked (and thrilled!) when I pieced it together! Looking back, I have no idea who was presenting or what they were talking about. I was ecstatic to meet Anne that day, a fellow deaf woman and someone whose smile melted away the stress of that orientation day on this brand new campus.
Anne: It really made my day when I learned of Breanne — I got goosebumps when I learned that I wasn’t the only deaf person and just had to meet her. I am so proud of Breanne for pressing on, reading thousands of papers, looking at microscopes, advocating for herself to get her guide dog, advocating for others, and continuing to succeed in her program. And I love being able to just communicate with her in sign and not have to worry as much about my speech! She is probably one of the first Deaf, and first DeafBlind in academia at Cornell’s AgriTech campus in Geneva and is making a huge impact there. Meanwhile, I have been staying in Ithaca, where my research is, and have been working as a Graduate Community Advisor for the graduate, post-doc, and visiting scholar housing community on Cornell’s Ithaca campus. I have also been educating the residents in the graduate community, which is predominantly international students, about people with disabilities. These residents, whom I love so much (they spark so much joy), either have a lack of or a rudimentary understanding of people with disabilities, as their native countries either suppress or hide their disabled citizens. They have been incredibly open and have shared with me that their experiences as foreigners are in some ways similar: having to navigate American sociocultural norms and encountering miscommunication and misconceptions. Many of them have made a lot of effort to communicate with me when we had trouble understanding each other! It’s encouraging to see that. In this context, Breanne and I have shared our thoughts, feelings, and strategies for working with people who have not had exposure to the deaf and disability communities.
Tell us of other ways that having deaf fellow students on campus have impacted you.
Breanne: In our second year, Anne introduced me to a new third Deaf person on campus — a new law student who already had a PhD, Dr. Caroline Block! We had a group facebook message going and we shared our experiences with the handful of ASL interpreters being assigned to us. We found out that whenever one of us requested a different interpreter, Cornell Student Disability Services would trade our interpreters mid-semester. When personal style is the issue, it’s okay to retain the interpreter for another student, but that wasn’t the case here. These interpreters sometimes didn’t have the experience necessary to interpret doctoral level courses, would check their phones mid-lectures, and would not wear black clothing despite knowing I’m blind. Thankfully, the three of us decided to meet with Student Disability Services and demanded that all ASL interpreters adhere to professional policy, and that one interpreter in particular never be hired for any other Cornell student again. Also, please let me note that we’ve also had some amazing interpreters, ones that are proficient and root for us every step of the way in our PhDs.
I remember early on in my studies being so stressed from the commuting to and from the Geneva campus, the culture shock of attending this big Ivy League university, and having to try and remember if I had requested access services (and if so, which ones?) for this event or that lecture. However, the absolute hardest part was falling victim to ‘the hidden curriculum,’ the unwritten norms and unspoken expectations that many underrepresented minority (URM) doctoral students are not aware of. My mother was the first in our family to go to college and got her Bachelor’s degree when I was growing up, and then I was the first in my family to pursue a PhD. It seemed like every graduate student in my department had at least one parent who had a PhD. I did not have many close friends in my program, and I felt so alone. Honestly, I had just kind of accepted this fate, that “okay, this is Cornell, they don’t have Deaf students or a deaf community in Ithaca”, that I truly did not think I should try to change things. I eventually realized it wasn’t just me. Cornell was not set up to support us and we needed to work exponentially harder than our peers just to survive. Without having Anne and Caroline to talk to for mutual support, I would have continued to think that my failure to thrive was my own fault.
On days where I did not feel like continuing on in the PhD program, I would still get out of bed and try because I knew that I represented so many Blind and disabled people out there who are told to pursue a career that “suits their blindness.” This is something my own family and friends told me too. As a disabled person who’s made it this far, I feel it is my duty to pave the way and make it easier for those who come after me. Anne and I are both trailblazers. I didn’t really know what was expected of me in terms of my doctoral research, but it was obvious that this place wasn’t inclusive to people like us so I buried myself in advocacy. I was committed to making Cornell a better and more equitable and inclusive place to go to graduate school. I was elected to and served on the Presidential Task Force that was formed in response to horrible incidents of racial bias in Ithaca, I served as the Graduate and Professional Student Assembly (GPSA) Student Advocacy Committee Chair, I wrote the mental health & well-being section of the Graduate and Professional Community Initiative (the GPSA’s 5 year strategic plan, administration use it to inform the decisions they make for our community), I worked closely with other student leaders, administration, deans, and people in Cornell Health and was very successful.
However, I can honestly say that I’m not sure if I would have made it this far in the program if Anne weren’t here, starting a PhD in the plant sciences at the same exact time. Anne is the only other scientist I have ever been able to use ASL with at a Cornell event, and someone who was dealing with so many of the same struggles as me. Having her to validate my experiences is what kept me strong enough to self-advocate in the face of trial after trial. We both eventually passed our A exams (doctoral candidacy exams), and we both felt embarrassed about when we did it — as if there was an unspoken timeline that we did not achieve compared to our hearing peers. However, I firmly believe that what matters most is crossing the finish line and not how fast you got there. I know that we will both cheer each other on during our dissertation defenses and both be successful in passing those too. I cannot stress enough how knowledgeable and skilled Anne is as a viticulturist and scientific researcher. This plant sciences are blessed to have a woman like her pursuing her PhD in a lab and university that has global recognition, and any institution would be lucky to have the chance to hire someone who is both so scholarly yet so pleasant to work with.
Anne: Yes, I echo Breanne’s statements about our experiences. We had challenges with the interpreters initially. I have had several interpreters who are lovely people, but I had to ask them to be more professional (wearing black, etc). One of them kept violating professionalism and had been passed around among the deaf students, so, with the power of three outstanding deaf scholars, myself, Breanne, and Dr. Block, who now has a PhD and a JD, we collectively met with the Student Disability Services to ask that the interpreter be removed. Since then, the interpreting agency, when faced with an interpreter shortage, kept bringing them up, asking if we were okay with scheduling them if nobody was available. We all would decline and change our meetings to avoid that situation. We are grateful that Cornell Student Disability Services has changed a lot since then, with the hiring of a wonderful disability accommodation access specialist who made an effort to learn ASL and all about Deaf culture! This specialist has gone above and beyond, so that is a change we are very pleased about – they have been very easy for me to work with. Plus they have honored my request to work with specific interpreters and not once did they assign me to someone who is not a good fit for me. I was able to focus a lot more on my studies, since this communication specialist has been hired. My student disability counselor, who has a disability, is also fantastic, and together with the accommodation specialist and the new director, created the change we needed.
Also, Breanne has done outstanding work with the GPSA and Presidential Task Force, and the American Phytopathological Society (APS) conference committee, bringing a lot of much needed change. And this is something we’ve also noticed: there is the hidden curriculum, sociocultural norms, and much more that many miss, not only in the deaf/HoH+ community, but also those in the disabled, first gen, and other minority communities. We hope to see Cornell doing something about it, developing a workshop or two to address the hidden curriculum, so we have been bringing specific aspects to light through our social platforms. I have been blessed with people including my family and my advisor who brought the bulk of the hidden curriculum to light, but many others are not as lucky. So the pipeline in retaining STEM scholars is leaky as people drop out or change their career paths. Again, Breanne and I have conversed a lot through various mediums, brainstorming approaches to educate people while supporting each other. She and I have also been overcoming challenges in our respective PhD programs and cheered each other on when we reach milestones. I received a conditional pass on my A exam and did not become a PhD candidate until my fourth year, which I was very embarrassed about, compared to others in similar fields, yet Breanne really cheered me on. When she shares her accomplishments with me, I have so much pride and joy for her!
What other challenges have you found remain for you in grad school, despite having the support of deaf colleagues?
Breanne: Cornell in general – it is not a welcoming or inclusive place for people like us, or us specifically. We’ve had faculty that are supposed to support, advise, and mentor us practically turn their backs on us at certain points in our programs. Even our professional support system is fragile. Luckily our support has grown, our access services are far better, and we now have an ASL professor on campus, Brenda Schertz. I am very hopeful that ASL and the deaf community will grow here. With this, I hope every student can find the mutual support Anne and I found in each other.
Additionally, I have since received my first guide dog which has significantly improved my personal and professional life. People in my department seemed confused as to why I needed one, I barely even used my white cane. However, they didn’t see me fall off the steps of the stairs inside the plant science building during my graduate school interview, my heart rate spike every time I stood at the top of the stairs when all the light bulbs were out, or all the bruises I had from travelling to/from work and running errands. I was so fortunate to have advisors that sought education directly from me on life as a scientist with a guide dog and supported me. In the United States, service dogs are allowed in all public facing businesses, even in hospitals, but individual institutions and professors often bar students and employees with service dogs from working in the laboratory. The only time a service dog should ever be barred from a scientific lab is if it would hurt the integrity of the research itself (i.e. an experiment on bird behavior when birds see dogs as predators) or if the research could seriously harm the service animal despite them wearing similar PPE to humans and staying out the way as service dogs are trained to do.I am deeply grateful for Cornell Student Disability Services and both of my advisors’ full support in this area, but the stress was certainly still there. I could so easily be denied access to my lab space like so many of my blind and disabled colleagues. I will not stop advocating for changes in this space because I have always firmly believed that science is for everyone. How can we recruit and retain diverse scientists if you reject a freshman from taking your introductory chemistry lab course because they have a service dog to mitigate their disability? Anne and I frequently speak out about our frustrations that despite endless conversations about ‘diversity,’ nobody seems to value disability as part of the beautiful spectrum of diverse and underrepresented people we need to support in STEM, and we are trying to change that.
When participating in a panel discussion in the DEAF ROC conference in Rochester, NY in 2019 called, “Successfully Advocating & Maintaining Relationships with Access Services,” I learned about PhD students having uniquely assigned ASL interpreters who they were able to develop a close working relationship with. This situation allows interpreters to learn the subject matter as the students develop their expertise throughout the years, and allows for more seamless communication with advisors and labmates. It also removes the burden from Deaf students of trying to remember whether or not they have requested interpreters for an event yet, since interpreters essentially maintain their same meeting schedule. Bringing disabled people together to share experiences is crucial, because this arrangement is something I never would have dreamed of asking for, yet would clearly benefit most Deaf PhD students. I firmly believe that this should become the norm for graduate school education, where 4-6 years are spent working tirelessly to become an expert and create new knowledge in a highly specialized field. In addition, I also look forward to continuing to work with Anne and other disabled colleagues, and pursuing a career that allows me to make drastic changes to make STEM more accessible, equitable, and inclusive for people of all historically underrepresented and marginalized backgrounds.
Anne: While we are very grateful for this opportunity to pursue a PhD at one of the world’s most renowned universities, Cornell generally needs a lot of advocacy to be kept accountable in adhering to its “any person, any study” motto. There is a lot administrators don’t know that we d/Deaf, DeafBlind, HoH, and other members of the disabled community continue to try to educate them about. There are things that we need in order to succeed, and we find ourselves advocating a lot for our needs to be met, and for policies to be put in place for future students so they can focus on their studies more. Unfortunately, there are still some people who question our abilities to do something simply based on our disability or hearing status. I have been lucky to be surrounded by excellent people in the viticulture and enology industry who are working to make the field more accessible. Breanne and I constantly have to remind people to look at the person, their passion and perseverance, as well as what they bring to the table, and not accept stereotypes held by the world. There are a couple of valuable resources already available including a wonderful paper done by our colleagues in Ecology and Evolutionary Biology (EEB) discussing strategies for at-risk scientists, and while they are helpful, there is still a gap when it comes to the deaf/HOH+ communities. I look forward to seeing a time when these gaps are all filled!
Due to recent racism and bias incidents, people at Cornell are beginning to open their minds to issues that disabled scholars too have been facing. Since we started in 2016, we have been advocating for captioning or transcriptions for podcasts and videos, contacting many clubs and departments, especially Cornell’s own Diversity and Inclusion office. Now Cornell does that by default much more often than they used to. There is still work to do but I am pleased with the progress we have made so far. I have been working with Cornell Dining to encourage them to develop alternative ways to order food, such as providing a paper and pen. While they listened to me, they decided to develop an app, “Get Set”, which allows students and faculty/staff to order ahead of time. It is a wonderful idea, however, there are people who don’t use smartphones and paper and pen are still not available. So that is a work in progress.
Breanne and I plan to co-author a paper to share our experiences of working with deaf/HOH + scientists, especially those with intersecting identities, to provide a framework for future mentors and scholars One thing we will highlight is the need for a designated interpreter who is to be assigned to that student only, going with that student everywhere, as needed, and to be on call for last minute meetings, like statistical consulting drop ins. We would love to see more Black and other minority deaf entering Cornell and we will advocate for the assigning of interpreters who are culturally similar e.g. Black interpreters, upon request. It is very encouraging to see the changes that are occurring.
This is part 2 of an autobiographic pair of posts by Stephen Klusza about his decision to get cochlear implants in graduate school. You can read about his life up to his decision in part 1. This multimedia post includes a video at the bottom of the page with images and excerpts of songs that express Stephen’s journey.
Hello darkness, my old friend,
I've come to talk with you again,
Because a vision softly creeping,
Left its seeds while I was sleeping,
And the vision that was planted in my brain
Within the sound of silence….
- Simon and Garfunkel “The Sound of Silence”
Within the past decade, I have occasionally remarked that if I were born 50 years earlier, I would have been out of luck. After losing the rest of my hearing, I felt that I was past the point of no return. In an effort to leave no stone unturned, I went to see a specialist at the Mayo Clinic in Gainesville, who ordered an MRI to determine the cause of the loss. Although the radiologist report came back with no findings, my specialist looked through it more thoroughly and found that my vestibular aqueducts were malformed in my inner ear on both sides. They were partially functional but prone to collapse at any time. Then, he said that I would be a good candidate for cochlear implantation. Even in the late 2000s, I had never heard of cochlear implants (CIs), despite my many previous visits to many audiologists and ENT doctors. I was stunned to learn that something could bring my hearing back. It all seemed too good to be true – and it was.
The doctor presented many caveats and uncertainties about the procedure. The process is irreversible, in that you lose any residual natural hearing upon surgical implantation. The surgery has a small risk of facial paralysis because of the proximity of facial nerves to where they drill to access the implantation site. The other factor weighing on my mind was the increased visibility of the processors compared to hearing aids. I had always worn behind-the-ear hearing aids that were visible with my short hair, but I still wished I could completely blend in the crowd and be left alone from all the stares and whispers that I had experienced all my life. Wearing hearing aids or cochlear processors was never a source of shame for me. I was simply tired of being a spectacle. I was tired of working much harder than hearing people just to be worthy of the furthest seat at the table. I was tired of persevering against all odds for a world that treated me as lesser than my hearing colleagues.
My pain is self-chosen
At least, so the prophet says
I could either burn
Or cut off my pride and buy some time
A head full of lies is the weight, tied to my waist
The river of deceit pulls down, oh oh
The only direction we flow is down
Down, oh down….
-Mad Season "River of Deceit"
I did not have a magical moment of rational clarity that led to my decision to get implanted. In my vulnerable state of self-preservation, I simply clung to the tiny slivers of hope that things might somehow get better with the implant. My first surgery (left ear) was scheduled during Christmas break to allow for recovery from the invasive surgery. My parents visited for a couple of days to help me get through the worst of the post-operative trauma from the outpatient surgery. I had a reaction to the anesthesia and severe dehydration led to nausea, vomiting, vertigo, and migraines from the tightness of the head bandage. My only respite from the pain was formless sleep.
Every Christmas, I would go with my parents to visit my grandmother, but I was unable to do so this time. She completely understood but it broke my heart that because of my surgery, she would not be able to see me or my parents that year. My parents spent a lot of time and resources to help me recuperate. I was more distant in my interactions with everyone, including my dog Honey. Given that we went on many daily walks and enjoyed play time whenever I was home, I can only imagine the puzzlement she felt when my demeanor changed, when I largely stopped doing those things with her. It is something I regret to this day because I lived by myself and she was alone whenever I wasn’t home, and there was no way that she could understand what was going on. In retrospect, I sometimes wonder if guilt was the deciding factor for me to get implants. There was a chance that implants could bring back some semblance of the life that I used to have with my family and the few friends that I had. I was even willing to put myself through more pain and uncertainty just for the chance to hear Honey’s grumbles and barking when she didn’t get her way (since I spoiled her rotten).
A long December and there's reason to believe
Maybe this year will be better than the last
I can't remember the last thing that you said as you were leaving
Oh the days go by so fast
And it's one more day up in the Canyons
And it's one more night in Hollywood
If you think that I could be forgiven
I wish you would
- Counting Crows “A Long December”
My first activation was mostly typical of other adults who have had cochlear implants – voices sounded like robotic chipmunks and high frequencies were like icepicks to my ears. Music sounded like washes and drones of static, like a detuned radio unable to tap into the specific frequencies. The doctors counseled me beforehand that it would take time for sounds to make sense. I understood what they meant, and accepted this logically, but nothing can ever fully prepare for you for how your body reacts to situations of uncertainty. My brain became a battlefield between the unconscious and the conscious, with the dueling synapses lobbing salvos of emotion and logic at one another in their pareidolic attempts to find answers within random patterns.
Here, there's no music here
I'm lost in streams of sound
Here, am I nowhere now?
Wherever I may go
Just where, just there I am
All of the things that are my life
My desire, my beliefs, my moods
Here is my place without a plan
– David Bowie “No Plan”
Towards the end of the following summer, the residual hearing in my right ear disappeared, which made me eligible for a second implantation. The only surgery time available was right before Christmas and I had to call my grandmother and tell her that I could not see her again, and that I was sorry. She wanted the best for me and assured me that it was okay. I resolved to make sure that nothing would get in the way of me spending time with my grandmother for the next Christmas. Unfortunately, she passed away before I could do so I could not fulfill her wish to see me graduate. I dedicated my doctoral thesis in her loving memory.
Time can bring you down, time can bend your knees
Time can break your heart, have you begging please
- Eric Clapton “Tears in Heaven”
It took me 2 years, from hearing loss to CI rehabilitation, to get to a place where I could listen to and enjoy music again and have conversations with people in noisy environments. When I was implanted in my other ear, recovery from was just as rough as the first time, but activation in that ear took a lot less time to program as my brain already knew how to process electrode signals. For a moment, I thought I was hallucinating when music I listened to would pan between the left and right channels. However, I soon realized that I was experiencing life in true stereo for the first time. After so many years, I could finally detect the direction sound was coming from, which gave me the strength to continue with my rehabilitation.
Altogether, I wound up spending 7 ½ years in graduate school with a minimum of papers, which many would consider a death sentence for academia prospects. Still, I forged ahead and secured a postdoc at the University of North Carolina, Chapel Hill and spent several years studying epigenetics in fruit flies. At the time I was applying for grants, several agencies included a section where applicants could explain discrepancies and life events that may have affected their publication record. I detailed my struggles in those sections and sent in my applications. I did not succeed in getting funding from those grants. I remember one of the reviewers remarking how I needed to publish a lot as a postdoc or I would not make it in academia, with no mention whatsoever of the life events that I went through. In knowing how reviewers do not read everything in a proposal, I question if reviewers actually read the documentation section and take into account obstacles that happen in people’s lives. In any case, it was clear that continuing in this traditional academic career path would be nothing more than going through the motions, with one foot in front of the other.
And I'm stuck in a shack down the back of the sea
Oh, and I'm alive and I'm alone inside a sick, sick dream
Oh, is it me, is it me that feels so weak?
I cannot deceive but I find it hard to speak
The hardest walk you could ever take
Is the walk you take from A to B to C
- The Jesus and Mary Chain “The Hardest Walk”
For the majority of my life, I never felt like I truly belonged anywhere. I was bullied by hearing students and adults throughout my adolescence. Those who did not approve of the bullying simply stood by the sidelines and averted their eyes. Perhaps I could have looked back on these times with more fondness if I was more involved with the deaf community. That never came to be, as I was told through the grapevine that deaf members of my family were upset and angry when I first got hearing aids as a young kid; they were even more upset about my decision to get cochlear implants. Cochlear implantation continues to be a contentious issue for many deaf people, who view it as a betrayal and rejection of deaf community and culture. I know now that there are many deaf people who welcome those with cochlear implants, but as a despondent deaf kid coming of age, I felt that it was only a matter of time before I would have been rejected from the deaf community as well, so I rejected the deaf community first.
Instead, I embraced the solitude that my deafness foisted upon me and adjusted my social habits in how I interacted with hearing people, for better or worse. Looking back, this defense mechanism had huge ramifications on my social skills that greatly influenced the future trajectory of my life, including my career. At one time, I thought that science research would be perfect – surrounded by dusty tomes and papers on a cluttered desk, my mind preoccupied with fantastic biology puzzles, and a minimum of human interaction. Of course, now that I am a scientist, I see that this was a pretty naïve viewpoint on my part. I had hoped that academia would be this enlightening, welcoming, and supportive place that I had always imagined it to be. I sacrificed two decades of my life in this endeavor, only to be told implicitly that I wasn’t worthy enough for future consideration as an academic. It was seemingly yet another rejection from a community that I had sought very hard for acceptance from…..
Don't come around here no more
Don't come around here no more
Whatever you're lookin' for
Hey! Don't come around here no more
-Tom Petty “Don’t Come Around Here No More”
or so I thought. I am now an Assistant Professor of Biology at Clayton State University, a public undergraduate institution (PUI) with wonderful and caring faculty and students. I have found colleagues and friends who share my values in building a better STEM for everyone through the Open Life Science organization and the Genomics Education Partnership faculty collective. I am married to the most amazing and wonderful person that I have ever known. I am here now, writing this blog post and telling my story for The Mind Hears. If you had told me five years ago that this world would become real, I would not have believed it. Yet here it is, and for the first time in my life, I am holding on with both hands and never letting go. For the first time ever, life looked a little bit brighter.
My life has been extraordinary
Blessed and cursed and won
Time heals but I'm forever broken
By and by the way
Have you ever heard the words
I'm singing in these songs?
It's for the girl I've loved all along
Can a taste of love be so wrong?
As all things must surely have to end
And great loves will one day have to part
I know that I am meant for this world
- The Smashing Pumpkins “Muzzle”
Dr. Stephen Klusza is a developmental geneticist who received both his B.S. and Ph.D. degrees in Biological Sciences at Florida State University and performed research in fruit fly epigenetics as a postdoctoral researcher at the University of North Carolina at Chapel Hill. As an Assistant Professor of Biology at Clayton State University in Morrow, GA, Dr. Klusza is interested in creating accessible and equitable low/no-cost educational resources and research opportunities to increase accessibility in education for all students. He also serves as the current Chair of the Diversity, Equity, and Inclusion Committee for the Genomics Education Partnership and advocates for disability representation in STEM and academia. @codebiologist
This multi-media autobiographical post by Dr. Stephen Klusza has two parts. Here, in part 1, Stephen shares with us his journey leading up to his decision to get a cochlear implant in graduate school. Part 2 will be released in late August 2021. Part 1 includes a video with song excerpts and images that augment Stephen’s story at the bottom of this page. You can find part 2 at this link.
I was born in the most perfect year, you see.
There was nothing too special about 1978 per se, but some of my most cherished moments were only a few years away. Born in the hazy and humid throes of Florida summer, I was just another toddler trying to make sense of the world around me. Around then, my parents grew increasingly concerned when I was not attempting to talk like other kids my age, but they were assured that some kids took longer than others to communicate. When I was 2½ years old, they knew something was wrong. As they called for me from behind, I did not respond; but my eyes lit up with a wide grin when they came into view.
Can you hear me, can you hear me running?
Can you hear me running, can you hear me calling you?– Mike and the Mechanics “Silent Running”
I had moderate-to-profound sensorineural hearing loss. I had had severe asthma for the first few years of my life that was resistant to treatment. A few times during my frequent hospital stays, my fevers spiked to 106-107˚ F and I was placed on top of bags of ice to save my life. It was thought that the recurrent fevers had damaged my hearing, and my parents were encouraged to fit me with hearing aids to amplify what I could hear.
Me mind on fire
Me soul on fire, feeling hot, hot, hot – Buster Poindexter “Hot, Hot, Hot”
If I could describe the early years of my home in one word, it would be music. There was nary a weekend when the record player wasn’t spinning the likes of Black Sabbath, Foreigner, Jethro Tull, The Cars, Jimi Hendrix, and hundreds of other bands. Then in 1981, something happened that transformed my life completely – MTV. With my new hearing aids, I soaked in the wondrous sounds from the stereo system, and the music from MTV ‘music videos’. At such a young age, the videos rarely ever made sense and my partial hearing loss meant I never understood the lyrics, but that was never an obstacle to my appreciation of music. I heard the wide-ranging melodies of 80s (rock to new wave to pop); this was combined with watching the artistry of the videos painting worlds I had never seen, the expressive emotions on the singers’ faces, and the translation of stories that brought the characters’ lives into pure sound. It did not matter if I could not understand the words, the music spoke to me more than words ever could.
I hear the drums echoing tonight
But she hears only whispers of some quiet conversation – Toto “Africa”
My memories of those times are not as sharp now (almost four decades ago). I still have the feeling of wonderment of all the videos that I voraciously devoured – Michael Jackson’s “Billie Jean”, Elton John’s “I Guess That’s Why They Call It the Blues”, Tina Turner’s “Private Dancer”, The Police “Wrapped Around Your Finger”, and others. I am very aware of the intoxicating bias of nostalgia, but it truly felt like a blissful, creative time. I loved watching the videos at a loud volume and bopping along to songs, such as Cyndi Lauper’s “Girls Just Want to Have Fun”. Looking back, my mother must have been exasperated at some of the songs I became obsessed with, particularly those in which I was able to make out a few lyrics. I distinctly remember singing the chorus “multiple” times from that one-hit wonder song by Madness:
Our house, in the middle of our street
Our house, in the middle of our street
Our house, in the middle of our street
Our house, in the middle of our…- Madness “Our House”
My love of 80s music paralleled my love of 80s movies and TV. I loved several science-themed movies that had the 80s-style poetic license in full effect, such as “Weird Science”, “My Science Project”, and “The Last Starfighter”, among others. My first exposure to the idea of college was the movie “Real Genius”, which showed extremely bright young people working on laser technology — which blew my still-developing mind. It would be many years before I could go to college, but I was already looking forward to skating on ice-covered dorm hallways, learning science, and building exciting inventions.
Gimme a new sensation
In a place that has no name
Something tells me I'll never be the same…- The Comsat Angels “I’m Falling”
As an adolescent, I experienced the usual share of high and low points, along with the difficulties of being a hard-of-hearing/deaf person in hearing schools. Nevertheless, I excelled in academics and began a love affair with genetics during Advanced Placement Biology in high school. All it took was my teacher Mr. Force (that was really his name!) introducing me to the Punnett Square, and I fell head over heels. I knew then that I wanted to major in Biology to become a geneticist. After graduation and a break for a couple of years, I went to graduate school to specialize in developmental genetics and become a professor of biology. The academic career path was the only one I knew at the time to do the science that I loved so dearly.
One night after working out, everything sounded off-pitch with my hearing aids on. I thought there was something wrong with them and I planned to have them checked out. Later, I woke up in the middle of the night with a splitting headache and thunderous ringing and feedback in my ears. I barely slept that night.
And I can't get it out of my head
No, I can't get it out of my head
Now my old world is gone for dead
'Cause I can't get it out of my head…- Electric Light Orchestra “I Can’t Get It Out Of My Head”
My way of understanding was shattered. Everything came to an absolute standstill. I lost count of the number of medical appointments that followed, and time slowed to a crawl. My mom accompanied me to one of my appointments and the doctor said, “I don’t know what’s wrong with your son”. My mom, always optimistic and full of life, became instantly deflated. I will forever remember the singular sensation in that moment of hearing the doctor’s uncertainty. It is like goose bumps, only it felt like a slow but steady wash of fluid electrocuting me. I remember the feeling of crackling, like lightning striking a strong tree and destroying it into a million shards of glowing embers. I was faced with the prospect that this was serious and potentially irreversible. Then came a creeping fear that music may forever be out of my reach from that point on. One of the most joyous parts of my life was gone. In its place, was a constant onslaught of throbbing, droning tinnitus, screeching, and roaring to an audience of one inside my head. With no relief in sight, I was no longer compatible with my body, and I was abandoned.
So it’s all come back round to breaking apart again
Breaking apart like I’m made up of glass again
Making it up behind my back again
Holding my breath for the fear of sleep again
Holding it up behind my head again
Cut in deep to the heart of the bone again
Round and round and round
And it’s coming apart again
Over and over and over- The Cure “Disintegration”
When all this happened, I was well into the fourth year of grad school. Prior to this sudden hearing loss and tinnitus, I had developed significant anxiety over my dissertation research. Grad school is often extremely stressful, and I had multiple experiments in progress at any one time. After that fateful night, I tried to go straight back to doing research and notified my mentor and lab mates that my hearing was messed up. I tried to keep up with my experiments, desperate for distraction from the severe tinnitus I was experiencing, but I started falling behind. The weekly meetings with my mentor and my camaraderie with my lab mates were strained, through no fault of their own. How do we support someone going through such a catastrophic event? How can we find new ways to communicate when the old method no longer works? Is it the right thing to do to let them be, or should we give help that is unsolicited? These are hard questions when someone is going through any significant loss and there are no right answers.
I attended lab meetings and tried my best to follow with the speech reading skills I had always used in conjunction with my hearing. At best, it was passable; at worst, I missed everything completely. I still had teaching assistantship work to carry out and carried around a dry-erase board and marker for communication. This system was fine for asking a question but was woefully inadequate for conversation. It was very isolating, and I did not know how much longer I could go on like this. I did not know sign language and even if I did, there was no one else to sign with. If I did manage to complete grad school and receive a PhD, it would take me longer than 5 years, further endangering my chances at success in academia. After working so hard and sacrificing so much to prove to the world and myself that I could make it as a hard-of-hearing person, everything seemed insurmountable.
In a little while
I'll be gone
The moment's already passed
Yeah, it's gone
And I'm not here
This isn't happening
I'm not here
I'm not here
-Radiohead "How to Disappear Completely"
I still cannot adequately describe my headspace during these events. Words failed me then, as they do now. In the movie Sound of Metal, Ruben experienced his loss by the simple fading of the crowd and the encroaching of the low, throbbing drone. My experience was more complicated than that. It would be a long time before I came across a song that stitched my disparate and fragmented memories with threads of undulating low end, trebly screeches, pulsing frequencies, and distant, indecipherable voices from the point of no return. This is not a song as most people understand them to be. This piece has traces of accidental musical notes underneath a burgeoning discord. The lyrics are crushed beyond recognition. Thanks to the kindness of Andrew Grant/The Vomit Arsonist, I have created a video of his song “no one can help you”, with the lyrics in the description (link to “No one can help you” video). Whether you wish to experience this or not, you have the choice that I never had.
Dr. Stephen Klusza is a developmental geneticist who received both his B.S. and Ph.D. degrees in Biological Sciences at Florida State University and performed research in fruit fly epigenetics as a postdoctoral researcher at the University of North Carolina at Chapel Hill. As an Assistant Professor of Biology at Clayton State University in Morrow, GA, Dr. Klusza is interested in creating accessible and equitable low/no-cost educational resources and research opportunities to increase accessibility in education for all students. He also serves as the current Chair of the Diversity, Equity, and Inclusion Committee for the Genomics Education Partnership and advocates for disability representation in STEM and academia. @codebiologist
I was born deaf. At the time, my family had recently moved to rural New Hampshire. Early on, my parents struggled because I did not hit age-appropriate speech and language milestones. However, doctor after doctor told them that my hearing was fine. One even suggested that my mother seek psychiatric help. Finally, my parents took me to Mass Eye and Ear, where I came under the care of an amazing woman, Audiologist Rhoda Morrison. She properly diagnosed my hearing loss (profoundly hearing impaired), and connected me with another amazing woman, Leah Donovan, a speech therapist.
We moved to the suburbs of Boston to be closer to Mass Eye and Ear and Ms. Donovan. I was fitted with hearing aids and rapidly became verbal. My family attributes my rapid acquisition of language to the fact that my mother and my aunt would regularly read to me. In fact, my habit of placing my ear on their throats while they read led them to believe I was unable to hear.
By the time I was ready to go to school, there was debate as to whether I should attend Beverley School for the Deaf or mainstream at North Reading Public Schools. Encouraged by Ms. Morrison and Ms. Donovan and learning about newly implemented speech and language services at North Reading Public Schools, my parents decided to mainstream me. Despite the challenges of being deaf, I found school easy and was often bored. I read constantly, everything I could get my hands on. My aunt likes to tell this anecdote about when I was very young. She asked me why I asked so many questions. I responded, “I want to know ebrything.”
My school career was checkered. Depending on my interest in the subject, I would either do extremely well or barely squeak by. I did not hear much that went on in the classroom but was able to compensate by reading everything. Even in grammar school, I had my sights on advanced study after college. However, I often felt stymied and underestimated by school administrators. On the last day of 6th grade, my friends and I opened our junior high school class assignments for the following fall. Finally, we had graduated from elementary school to having classes in real subjects: life science, English, history, mathematics. Classes were assigned numbers for degree of difficulty: 0 for honors, 1 for standard and 2 for remedial. I sat in shock and shame on seeing I was assigned to level 2 classes. These assignments were not based on my grades or my standardized test scores, but rather the perception that, as a deaf student, I would not be able to compete against my peers in a junior high classroom. Skipping ahead 4 years, my guidance counselor at my highly competitive private college prep school disregarded my National Honor Society standing and told me not to bother applying to my top choice as I did not stand a chance in getting accepted. Consider instead a local state school or even a community college, he advised. Later, at Holy Cross, an academic advisor told me I should be ‘more realistic” on learning of my intention to follow the pre-med program. Medical schools would not make “exceptions” for my disability. In any event, patients would avoid a deaf doctor regardless of his qualifications. I remember these events often and have made it a point in my life to make sure that I do not belittle the aspirations of others.
My advisor’s advice notwithstanding, I followed the pre-med track as an undergraduate. However, on being employed as a phlebotomist at a local hospital, I realized medicine was not for me. I disliked working in the hospital and found the work exceedingly stressful. Since I had been targeting medicine as a career for most of my early life, I did not really have a plan B. After a few lateral moves, I decided to pursue a career in academia.
How did you get to where you are?
Following my decision not to seek a medical degree, I was not sure what to do. I interned at a few companies in industry, but nothing really captured my interest. I ended up taking a job as a groundskeeper at a fancy New Hampshire resort on a lake. I had not quite finished my bachelor’s degree (all that remained was completing Physics II), but I agreed to work from May to November. That summer was quite idyllic. I enjoyed the outdoor work immensely and was quite prepared to not return to college in the fall. In my non-working hours, I evaluated different methods of estimating chipmunk population density for my college honors thesis. At some point, I found out that my boss, Carl, was the son of zoologist Hubert Frings of the University of Hawaii. Carl himself had done extensive behavioral ecology work with his father and advised me on my research project. From him, I learned more about science and academia as a potential career.
One day at the end of August, Carl took me aside and said, “I’m afraid I am going to have to fire you.” I was stunned. I thought we were getting along well. “You shouldn’t be wasting your time here,” Carl continued, “You should be finishing up your degree. You still have time to enroll in fall courses.” So, with that, I returned to school to finish Physics II and graduated the following semester.
As I was increasingly interested in wildlife biology, ecology, and evolution, I applied for and was accepted into the master’s program in zoology at the University of Idaho. I will not dissimulate here; my main motivation, in addition to getting a masters, was to explore the country around Idaho. I was captivated by the place names on the atlas — The Wilderness of No Return, Hell’s Canyon, Yellowstone, Snake River, Glacier National Park, Craters of the Moon — that flanked the largest wilderness area in the lower 48.
For two years, I studied the behavioral ecology of pronghorn antelope on the National Bison Range in Montana. I loved the work and found myself very much at home in science and academia. Unfortunately, I discovered that behavioral ecology was a very challenging field to pursue. Jobs and funding were difficult to acquire, and the work was very slow making it difficult to demonstrate productivity. Some faculty in my department advised pursuing other fields of biology, perhaps with microbes. At the time I thought, “Microbes? Are they nuts?”
My master’s studies were also noteworthy as I reached the limits of my ability to compensate for not being able to hear much of what occurred in classrooms by reading extensively. My professor in Comparative Vertebrate Reproduction would cover the very latest research, which was not written up in the standard textbook. This circumstance forced me to acknowledge my deafness to myself and realize that I could not compete with my peers without assistance. With considerable reluctance, I sought help with Student Services, and was provided with a notetaker. It worked out well in the end; my friend was paid to attend class and take notes (as she should have anyway) and I received extensive notes on the lectures.
Following graduation from University of Idaho, I decided to pursue mosquito biology reasoning that, as disease vectors, the research would be fundable by NSF and NIH. I joined Todd Livdahl’s lab at Clark University for a PhD. The project, which included a research assistantship, was fully funded and would be close to my family in Massachusetts. I enjoyed my time in Worcester, Massachusetts and was happy with my decision to pursue an academic career. However, after a couple of years, I became somewhat disenchanted with mosquitoes; they suck (blood). To maintain mosquito populations in the laboratory, we were obliged to feed the female mosquitoes blood meals so they could lay eggs. There are several ways to do this, but the easiest and cheapest is to use graduate students. So, I offered up my arm for mosquito feeding for science on a daily basis. The only good thing I can say about this experience is that it somewhat reduced my body’s reaction to some mosquito species’ antigens. For some mosquito species, bites no longer itch.
After a couple of years of blood-feeding mosquitoes, I decided to do my dissertation research on another topic. In a committee meeting, one of my committee members suggested that I should model my career on Richard Lenski of Michigan State University. He was one of the founders of the field of experimental evolution. For my dissertation, I decided to experimentally evolve populations of the nematode, Caenorhabditis elegans to test hypotheses regarding the evolution of sex and recombination.
After successfully defending my dissertation, I reached out to Rich Lenski and inquired about a postdoctoral position. He let me know that he did not have any opportunities available, but that his former doctoral student, Paul Turner of Yale University, was looking for a postdoc. Working with Paul, I was able to acquire an NSF Postdoctoral Fellowship and took up the study of the bacteriophages of Pseudomonas syringae. Yes, microbes. The very same organisms I shunned as uninteresting just a few years prior.
In Paul’s lab, I fell in love with phages and decided it would be my scientific focus in my own lab someday. After three years in Paul’s lab, Ing-Nang Wang invited me to join his lab at University at Albany to work with Escherichia coli phages. Here I learned about genetically modifying phages and started a long-term project on stochastic gene expression that I continue today.
In 2007, I was hired as an assistant professor at Queens College and rose through the ranks to my present position as full professor. My two biggest accomplishments are having a continuously funded laboratory over the past 14 years and having mentored dozens of students from a wide variety of backgrounds in research. I still study the viruses of bacteria as well as other viruses such as rotavirus and SARS-CoV-2.
What is your biggest professional challenge? How do you mitigate this challenge?
My biggest professional challenge is hearing in difficult situations, such as in noisy environments or in rooms with poor acoustics. This manifests itself at events such as scientific conferences and while teaching. I have great difficulty hearing amplified talks, questions from students during classes that I teach, and people speaking during noisy conference dinners or poster sessions. This difficulty makes it very challenging to network with other scientists or keep up with advancements in my professional field. Social media, especially Twitter, have helped mitigate this challenge somewhat. In addition, the COVID19 pandemic has led to a transition to video conferencing, which, when coupled with live transcription, make it much easier to understand my colleagues when they speak.
One of my great failings has been not asking for accommodation when needed. Asking for help goes against my very strong impulse towards independence and my desire not to inconvenience others. The COVID19 pandemic has inspired me to advocate for myself much more than I formerly did because without accommodation (i.e., live transcription), I would not be able to participate in my work. I am resolved to request assistance when needed in the future, which may come in the form of interpretation at conferences and other events and in the classroom.
What advice would you give your former self?
Two things: 1. Trust your instincts, and 2. What do you care what other people think?
After a long five years, my stint as a PhD student was finally reaching its end – and that meant I needed to hit the job market. As someone who was graduating from the Department of Computer Science at the University of Toronto with a specialization in computational biology, I had some uncertainty about what kinds of positions I should be applying for. I was at the intersection of two fields with drastically different career trajectories. In the life sciences you are typically expected to spend a few years as a postdoc, but in computer science it’s not uncommon to apply for faculty positions right out of the PhD. I did know that I wanted to stay in academia, so I decided to apply to assistant professor postings first to see if I could successfully convince search committees that I was really more of a computer scientist, and then I’d fall back on postdocs if my search was unsuccessful. What I didn’t know was how much my preferences would evolve through the job search: despite being offered a Canada Research Chair position that would have come with up to a million dollars in federal funding, I ended up choosing an industry research position at Microsoft Research (MSR). What influenced my decision to choose industry over academia?
When I first entered the job market, I had three main ideas about academia that made me believe it was the only option for me. First, I thought it was more accessible. Universities are usually progressive, and each has their own accessibility or disability services department. Even though accessibility legislation exists, I always thought that the expense of hiring interpreters would clash against corporate goals of profit, so I assumed that companies would try to scrape by with the bare minimum of accommodations. Second, I thought it was the only place where I could pursue an independent research agenda. I do a lot of basic research, and I strongly believe that scientific research should be used to enrich everyone’s lives and be accessible to everyone, not held as secrets in a private company. Third, I thought it was the best opportunity for mentorship. In academia, you are required to mentor students. As someone from an underrepresented background on multiple axes, I wanted to make sure that other underrepresented people had the same opportunity to benefit from the academic system as I did.
So naturally, the majority of my applications went out to universities. I sent out a total of 32 applications to research-intensive institutions globally. I made one exception — I sent out an application to MSR as the sole industry position I applied for. The only reason I sent out the MSR application was because a colleague had transitioned to a position there, and he sent me a Twitter DM inviting me to apply. I was initially resistant, but he reassured me that the application would be no additional work; to apply I just needed to submit the same research statement and CV that I was sending off to academia. I figured I had nothing to lose by applying, and sending off my application took less than thirty minutes on their online portal.
A few months after I sent out my applications, I starting hearing back from departments. Being a fresh PhD graduate with no postdoctoral training, and with the pandemic causing hiring freezes, I was pessimistic about my prospects — so I was surprised to learn that I had scored several interviews at institutions in the United States, Canada, and Europe. What surprised me was that at the majority of institutions I was interviewed by life sciences departments, while the computer science departments mostly turned me down. I was expecting the opposite given the standards for postdocs in both fields, but it turned out that many life sciences departments were excited about interdisciplinary research and aware of field-specific nuances in training. The majority of institutions where I interviewed were incredibly warm and inclusive, and excellent on access: one consulted with their access department ahead of time and offered me 1.5x the time on the screening interview to account for interpretation delays; another institution’s search committee greeted me in sign language. I think my positive experience may have been influenced by me explicitly identifying as Deaf and queer in my research statements; some institutions may have self-selected out at that point, leaving me with only the progressive departments.
My interview at MSR came later than most of my interviews in academia, so they had to beat a pretty strong impression as well as my natural resistance to the idea of industry research. So how did they do it? What I found is that MSR systematically challenged each of the misconceptions that I had about academic versus industry research. In doing so, they exposed faults in the academic system. While I was aware of these faults, I always considered them nuisances that I had to accept to join an otherwise principled system. MSR offered some better alternatives, and made me realize that these were things I did not actually have to put up with.
First, on the accessibility front, I was taken back to learn that Microsoft had their own in-house ASL coordination team. During my academic job interviews, I was mostly interviewing at departments that while open-minded, had never employed a Deaf faculty member previously. I expected this would be the case; Deaf STEM PhDs are still rare due to the sheer amount of systematic barriers, so I naturally accepted that I would need to do a lot of explaining and legwork on my needs. I had already devised a strategy to minimize the impact of this inexperience on me: I told each of the departments that they should enlist my current academic interpreters at my PhD institution, so I would not be penalized as departments scrambled to find potentially less-experienced interpreters without being aware of the pitfalls. In contrast, the ASL coordination team at MSR directly reached out directly to me. They were totally on board with my plan, but they also made me aware of their own services. They told me that they provided ASL interpretation for about 40 Deaf employees globally, so they already had a system in place for coordinating interpreters. In fact, their in-house ASL coordinator was actually Deaf herself, and was a certified DI — I had an opportunity to chat with her, and we discussed her plans for building a community for Deaf and hard of hearing people at the company.
This was the first thing I realized MSR could do better than most academic departments: they were able to bring institutional knowledge on accessibility. I’ve always considered myself fortunate, because as a Deaf person, I’ve rarely had to “fight” for my needs — I’ve mostly worked with accessibility departments and academics who were open-minded and interested in accommodating me. But even when working with institutions that are willing, I still have to allocate a proportion of my energy to explaining who I am and what I need to those who have never worked with Deaf people before. I had always considered that energy tax to be inevitable. Microsoft challenged that belief. While I still have to do some explaining — for example, I’m the first Deaf person they’ve hired in a research role (as opposed to sales or engineering etc.), so there are still specific nuances that come with that — for the first time, I could consider what else I could do with the energy that I would normally expend on defending my existence.
Second, on the research front, I learned that MSR gave full research autonomy to their researchers. Prior to interviewing at MSR, I mostly knew about industry through informational interviews with start-ups and smaller biotech companies. I was not impressed; in addition to keeping my research scope constrained on what would be immediately beneficial to the company, I would not have the opportunity to publish and disseminate my research to the public. What my interview at MSR taught me was that industry research actually occupies a wider spectrum than that. The researchers there explained to me the structure of the company: while Microsoft itself has its own research team that does work on more product-orientated research, MSR is considered an independent entity. While it receives funding from the parent company, the researchers pursue their own research agenda, publish almost all of their research publicly, and maintain active ties with academic institutions. Finally, I was also very excited about how the research group was set up: unlike a traditional academic department, which is stratified by discipline, MSR is highly interdisciplinary, and you see social scientists, mathematicians, biologists, etc. on the same floor every day, instead of being hosted in a different buildings across campus. As a highly interdisciplinary researcher, I was excited about just how much my research would branch out in an environment where I was in constant contact with people of different research backgrounds than me.
Essentially, my new position looks similar to an assistant professor position, with some key differences: the biggest is that there is no grant-writing or mandated teaching involved. There is also no tenure involved. For me, all of these things were appealing. I had always viewed the grant-writing side of academia as a necessary evil to keep the research churning, and the prospect of just not having to write grants was mind-bogglingly exciting. While I enjoy teaching, I enjoy it with highly-motivated students who are there to learn, and I don’t like the administration aspects of more routine courses where many students are just there to check off a requirement on a degree. As for tenure — while the end-prospect was exciting, I was concerned about how the demands of the tenure track might change my values and research philosophy. One of the things I expressed while interviewing with academic departments was that I didn’t want to sign up for a school where publication requirements for tenure were too demanding. I felt that stress of churning out papers might trickle down to my students, and I wanted to be someone who would hold space for my students to learn and explore their own interests instead of expecting them to be productive to bolster my own portfolio.
Third, I realized that there is still so much mentoring that can be done outside of formal academic structures. One of the disadvantages of the MSR position for me was that I would not be able to build a lab and mentor students through a graduate degree. I initially considered this a serious demerit that would clash with my goals of fostering underrepresented students through the academic system. However, the other benefits of the MSR job made me think about alternative ways I could achieve this goal. I realized that the autonomy baked into the job would still give me a lot of opportunity to do good. For example, each researcher at MSR has the opportunity to hire an intern from a graduate program every year, and I consider this a way to give students opportunities and expose them to new research interests; I plan to keep the scope of my hiring wide and will be looking at outreach from institutions that serve underrepresented students, like HBCUs. Similarly, a lot of MSR researchers take on voluntary academic supervision or service appointments: some serve as diversity chairs for conferences, and many sit on PhD committees. I’m already discussing co-supervising some postdocs, and opportunities for more machine learning education at Gallaudet. I would say that not limiting my mentorship options to the boxes that academia provides for me may foster more creativity, and I’m looking forward to how I carry this out in the future.
Overall, my interview at MSR left a major impact on me. And this meant I had a very difficult decision to make: my offer at MSR came at the same time as an offer from a major Canadian university. I remember sitting at my desk with both offers side-by-side, and thinking how my offer from academia was everything I had ever wanted. Even when I was a child, my parents had always encouraged me to go into higher education, because they said that with my disability, public institutions would be willing to accommodate me but not private companies. In some respects, I had been groomed into viewing academia as the place for me, and I also feel like this story is true for many other disabled people. I think this is a motivating factor behind much of the activism around accessibility in higher education, because there is a dissonance between the way we are trained to see academia as a sanctuary, and the way it actually is in practice. But in the end, my industry offer won out. It promised a brighter future, without many of the things that I had settled for as a matter of “this is just the way things are” in academia. While we will see if those promises bear fruit, for me, the risk is worth it.
By day, Alex Lu is a computational biologist whose research focuses on artificial intelligence that can “teach themselves” biology in large-scale microscopy datasets through puzzle-solving and interaction. He holds a PhD in Computer Science from the University of Toronto, and will be starting as a Senior Researcher at Microsoft Research in September. By night, he is a Deaf-queer community organizer. He previously served as a board director for the BC Rainbow Alliance of the Deaf, the frank theatre company, and OPIRG-Toronto. His work as a journalist focuses on the intersection between disability, queer, and racial communities.
Deaf and hard of hearing professionals who use hearing technologies sometimes find ourselves in challenging situations. Whether at conferences, in daily work environments, or in other professional settings, we encounter frequent misunderstandings about our hearing abilities. At times, hearing colleagues mistakenly believe that we understand everything that is said so long as we have heard it. We might need to advocate extra strongly for ourselves when a conference organizer declines to provide American Sign Language interpreters, CART services, FM systems or other accommodations because we have access to sound. Colleagues who see us every day might assume that we have access to information when we do not: that we understood an oral exchange simply because we heard it.
Family members of deaf and hard of hearing (DHH) people sometimes ask me questions like this one: “My deaf child seemed not to hear when I asked if she finished her math homework, but she understood when I said, ‘Dinner is ready!’ Why did she hear one but not the other?”
Like many DHH people, I have experienced hearing without understanding. As an audiologist and cochlear implant user, I know to expect this from myself. But awkward situations do occur sometimes. I might find out that a neighbor spoke to me in the hallway and now believes that I’m rude because I didn’t answer. Or a friend thinks that I don’t care about their problem because they mentioned it while I wasn’t looking and I didn’t catch all of what was said. Or a family member is confused because I understood, “What movie do you want to watch?” but missed, “Could you do the laundry tonight?”
Explaining, “I heard it, but I didn’t understand it,” can be a challenge. Most people, including our hearing friends and families, have never had to think about the differences between hearing and understanding. What are those differences, anyway? To answer that question, we need to consider the following:
Hearing devices do not provide “normal” hearing. Hearing aids, cochlear implants, and other devices are great technologies. Many DHH people use them for access to sound, but they do not provide “normal” hearing. DHH people have more access to sound with hearing devices than we have without them, but these technologies do not work like eyeglasses that correct to 20/20 vision.
Hearing is not just about the ear. We hear with our brains, not just our ears. Hearing aids and cochlear implants do not repair damage to the tiny nerve cells in the inner ear, the bones in the middle ear, and other parts of the ear’s anatomy that may be affected. Because of this, DHH people who listen through hearing devices do not necessarily receive the same sound input to the brain as hearing people.
Hearing that sound is happening is not the same as processing sound. Determining where a sound is, how far away it is, what kind of sound it is, and whether it is different from other sounds: all of these are possible because of auditory processing in the brain. When a hearing person is listening, they have access to subtle auditory cues. These are variations in sounds that we need for differentiating one sound from another. They play an important role in auditory processing. Even with hearing devices, most DHH people will miss some of these cues. In some situations, these cues are missing for hearing people too. Have you ever struggled to understand someone speaking through a megaphone, intercom system, or out-of-tune radio? Hearing a spoken message does not necessarily mean that all of its information was accessible.
What might happen if a DHH person heard the message, but some of the information in it was not accessible? A few examples:
Misunderstanding words and sentences: the DHH person heard, “The samurai” instead of “The sand is dry.”
Misunderstanding the tone of the message: the speaker was excited, but the DHH person heard their tone of voice as angry.
Difficulty hearing in background noise: the speaker’s voice seemed distorted by the noises in a restaurant or at a party, and the DHH person did not hear the words clearly.
Perceiving a sound as far away when it is nearby: the speaker was near the DHH person in the hallway, but the sound of their voice seemed farther away. The DHH person did not know that the speaker wanted their attention.
Perceiving two similar but different sounds as the same: the DHH person consistently hears /m/ and /n/ as the same, so words like “moo” and “new” also sound the same.
Listening for understanding requires cognitive effort. Auditory processing isn’t the only thing that the brain does with sound. Language processing is a whole other topic for another day (and spoken language is not the only kind of language!). For now: making sense of sounds and understanding their meanings within a spoken language requires effort and energy from our brains. That effort is greater for DHH people who use hearing devices because the auditory input that we receive is not the same as hearing people receive. Noise in the background means that even more cognitive effort is required for listening. When a person has to use more cognitive resources to listen, their ability to comprehend and remember auditory information decreases.
Think of it like the gas tank in a car: when the road is clear and you’re driving at a steady speed with no delays, you will use less gasoline than you would when driving the same distance in a rush hour traffic jam. For most hearing people, daily listening involves clear roads and steady speeds with a few pockets of occasional traffic. The day ends, and a new day begins with a full tank of gas. But for DHH people, there are fewer clear roads. The day is full of traffic jams and roadblocks like background noise, lack of access to visual cues, and complex listening situations where auditory information is missed. The day ends, but our gas tanks never get refilled completely. Our hearing coworkers and classmates might be ready for a nap by the end of a long day while we were exhausted and in need of a listening break (and maybe a nap too!) by noon.
Why did the DHH person in your life hear what you said just now but didn’t seem to hear you five minutes ago? Maybe they heard you talking five minutes ago but didn’t know that you were talking tothem. Maybe because they thought you were talking to someone else, they opted to save some of their listening energy for later. Maybe they heard what you said five minutes ago but another sound was happening at the same time and their brain prioritized that sound instead. Maybe the speech sounds of what you said five minutes ago were more challenging to understand than the speech sounds of what you said just now. Maybe the DHH person is exhausted from a long day of nonstop auditory input, and what you said five minutes ago required more listening effort than what you said just now. Or maybe you spoke more softly five minutes ago and they didn’t hear you at all. There are many possible reasons that a DHH person might not have understood a spoken message.
Dr. Sparks holds a clinical Doctorate in Audiology (Au.D.) from Gallaudet University. She is the founder of Audiology Outside the Box, an audiologic counseling and aural (re)habilitation-focused telepractice. She also works part time at another clinic, providing cochlear implant, hearing aid, and diagnostic testing services. Currently, she is 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.