Tag Archives: deaf academic

Lyrics from Vomit Arsonist "no one can help you" sound with image of barbed wire in the background. "no one its a lonely journey where suffering in silence is the standard suffering alone suffering all I ever want is someone to ask if I'm ok but no one ever does

The Sounds of Silence

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.


— Stephen

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

Smiling white man sits at a table with a model of the human ear in front of him. He wears black sweater and behind him are shuttered windows. The text on the right reads " Cochlear implants are not my thing... yet" On the left "the Eagle Ear Blog' is written below The Mind Hears logo.

Cochlear implants are not my thing… yet

— Henry

This is a repost from Dr. Henry Adler’s blog, The Eagle Ear, where he chronicles his career and deafness. ‘Cochlear implants are not my thing… yet‘ was originally posted at The Eagle Ear on November 29, 2020.

I was a graduate student at Dr. James Saunders’ laboratory at the University of Pennsylvania in the late 1980s and early 1990s.  At that time, the laboratory focused on both the structural and functional aspects of hearing loss and recovery in chickens.  The laboratory had other research interests such as the structural aspects of middle ear bone development in small mammals, but that’s beside the point.

I was the first deaf graduate student at UPenn’s own Biomedical Graduate Group – I entered there with an undeclared major in the fall of 1989.  My initial plan was to major in pathology but I eventually got my doctorate in Neuroscience. That’s been already explained in an earlier blog (Why I chose Neuroscience over Marine Biology – August 17, 2020).

It was an unusual time for me and anyone involved in inner ear research for different reasons.

As for me, I was probably one of very few scientists with a congenital hearing loss, perhaps the first deaf scientist who attended any meeting of the Association for Research in Otolaryngology (ARO).  Yes, there had been a few others with hearing loss who had attended such a meeting, but none of them was born with a hearing loss or had hearing loss at an early age.

As for other ARO members, well, many, if not all, of them had originally focused on helping ameliorate the effects of hearing loss on everyday life.  Such focus had involved learning how to treat or even cure hearing loss.  When they either met or heard about me, they’d say, “Whoa!”  They must’ve been struck by the possibility that maybe a deaf individual might want not only to learn about the functional and structural aspects of hearing loss in all animals including human beings but also to consider treatment for his own hearing loss so that he could fit better into the Hearing Research community.

Well, as I described in an early blog (‘You have a bad attitude’ – August 17, 2022), the answer is no.

For several years when I was at Jim’s laboratory, I had worked with him, fellow graduate students, medical students doing rotations, residents in otolaryngology and other visiting scientists.  Some, if not all, had tried to pressure me into having a cochlear implant, either seriously or in a fun way.  I always brushed them off.

Nearing the end of my graduate studies, I was working on my Ph.D. dissertation.  Naturally, I was under immense pressure to finish it off before my dissertation defense, but I also was able to relax a bit when I could take a few moments to do so.  One of them took place at the laboratory when I believe we all had a lunch break, maybe for a pizza or dessert break.  Jim and all his graduate students were chatting back and forth, and of course I couldn’t grasp all of what they were talking about.  Somehow, Jim commented something about cochlear implants, and I finally blew up on him.  Jim realized how serious I was about not having a cochlear implant, even though the point he was making was not about my decision not to have a cochlear implant but was made in general.  But at that time, I thought he was talking about me.  Hence the loss of my temper.

A few weeks later when it was time to orally present and defend my dissertation, my parents and my fiancée Denise came to watch me.  I was nervous as hell – I was rather confident with my approach to present my work but had little, if any, preparation to answer audience questions for several reasons.  

One reason is I didn’t participate much in group discussions about hearing research in general – participants would talk back and forth, and sign language interpreters would try to capture what they were discussing.  Unfortunately they weren’t always successful because they themselves weren’t scientifically proficient.  Another reason is that Jim and/or my fellow graduate students either didn’t have time and/or didn’t know how to prepare me for any question-and-answer sessions.  Even though one of my fellow graduate students had deaf parents, he himself was a very quiet individual. Most of the time, no sign language interpreters or any other accommodations were available at the laboratory.  So, it was OK for me to sit back and let them talk without my having to participate.  No wonder that at least one of my fellow graduate students had felt (and even expressed) that I had been a lazy student.

Let’s go back to my lack of cochlear implantation during my graduate studies.  When I barely passed my dissertation defense (I thought I didn’t pass it, but I wasn’t the only graduate student who had felt that way), we had a lab party.  During the party, Jim had told my parents that I would not be a good candidate for cochlear implantation. He might have based his conclusion on his interactions with me, including my blow-up a few weeks back then.

Several days, months or years later (I don’t remember exactly when), my parents told me about Jim’s mention of my not being a good candidate for cochlear implantation.  At first, I said OK.  Later on, when my parents read my blog (that is, You have a bad attitude), they reminded me of Jim’s assessment of my candidacy.   

Now, only after I had kept (and still keep) hearing from my peers with hearing loss who now wear cochlear implants and are doing well, career-wise, as well as had seen how well my wife Denise is doing with her own cochlear implant, I realize that the lack of candidacy was based on my attitude on cochlear implantation.  It’s not because I’m against cochlear implantation, but because comments from people with whom I’m friendly or in a close relationship have stiffened my resistance against having my own cochlear implant.  Plus, I just have had too many things on my mind, and I don’t want cochlear implants, followed by therapy, to take time away from things I want or need to do.


Biography of Henry J. Adler: I am a Research Assistant Professor at the Center for Hearing and Deafness at the University at Buffalo.  I do research on several fields of Hearing Science — they include (but are not limited to) hearing loss, hyperacusis, and tinnitus, as well as inner ear injury, protection, and repair.  I have been involved in Hearing Research since the early 1990s when I was a graduate student at the Biomedical Graduate Group at the University of Pennsylvania (UPenn).  I have been profoundly deaf since birth and started wearing hearing aids AND speech therapy when I was 15 months old.  I went to the Lexington School for the Deaf in Jackson Heights, NY and then was mainstreamed into the NYC Public School System, which culminated with my entrance into Bronx High School of Science.  Afterwards, I matriculated at Harvard University, majoring in biology, and worked as a research technician at the Massachusetts Eye and Ear Infirmary for two years before entering UPenn.  Within a year after my college graduation, I began to interact with Deaf people and eventually became adept in American Sign Language.  So, I’m not limiting myself to just spoken and sign languages but I aim to maximize my efforts to obtain as much information as I can at both personal and professional levels.  You can learn about my perspectives on the effects of hearing loss on both personal and professional lives of mine via the-eagle-ear.com.

Profile: Dr. Maartje De Meulder

A white woman with light brown short hair smiles with her hand on her hip. She is wearing a white t-shirt with an image of Frida Kahlo.
  • Current title: senior researcher/lecturer
  • Location: University of Applied Sciences Utrecht, the Netherlands
  • Field of expertise: Deaf Studies and applied language studies
  • Years of experience (since start of PhD): 8
  • Website: https://maartjedemeulder.be/
  • Twitter: @mdemeulder

Background?

I was born in Flanders, Belgium to hearing (non-signing) parents. I am the oldest of four. I grew up hard-of-hearing and became deaf in my teenage years. I went to a regular school where I used hearing aids and FM and relied on lipreading. I was raised and educated in Dutch, and learned to sign (Vlaamse Gebarentaal – Flemish Sign Language – VGT) when I was 16, through socializing in the Flemish deaf community. At home with my partner and two children I use VGT. In my personal and professional life, on any given day I use a mixture of languages: Nederlandse Gebarentaal (NGT) (Sign Language of the Netherlands), British Sign Language, International Sign, VGT, Dutch, and English. As a Belgian I can make do in French, and I can understand ASL (or some academic ASL at least).

How did you get to where you are?

After I obtained my first MA degree in Belgium (Disability Studies), I felt that something was missing. I applied (and got funding, quite importantly) to study for an MSc in Deaf Studies at the Centre for Deaf Studies (CDS) at the University of Bristol in 2005. It was one of the best decisions of my life. It felt like coming home, not only in terms of content of the study but also because there were other deaf students, the classes were mainly taught in British Sign Language, some of the professors and lecturers were deaf themselves, and the social life was also in sign. It was in Bristol that I realized I wanted to do more research in Deaf Studies. Bristol also gave me a brilliant network of friends and colleagues.

After I got my degree, I actually got the opportunity to do a PhD at the University of Bristol, but decided to defer the funding for one year because I felt I had done enough studying by then (6 years), and wanted something different that was more practice-oriented. The Flemish deaf association offered me a job in their advocacy team and I decided to take the offer. This was also one of the decisions that have deeply influenced my life and who I am as a researcher and a person. Eventually, one year became five years. Five years of advocacy work (linked to deaf education, access, sign language interpreting services, tv broadcasting, etc.), community work (organizing events, workshops, courses), learning to engage with a great number of different people from all walks of life. It was a great experience.

After five years, I felt it was time to get back to research again, but obviously by that time my funding in Bristol was no longer available. I started to look for PhD funding and in the end got a PhD position at the University of Jyväskylä in Finland. My PhD was about the legal recognition of sign languages — more specifically in Finland and Scotland, where I followed the process from initial campaign to final adopted law. After my PhD I started a post-doc position at the University of Namur in Belgium funded by the Marie Curie Actions, for which I did a study on sign language vitality in Flanders. When that funding ran out, I applied for a few academic jobs and got a position at the University of Applied Sciences Utrecht (HU) in the Netherlands, which is currently my institution. HU is the only university in the Netherlands that trains sign language interpreters (at BA-level) and they also offer a Master in Deaf Studies. I teach both BA and MA students, and am also a senior researcher at the research group ‘Participation through Communication’, where I am responsible for carrying out Deaf Studies and sign language research.

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

Working with sign language interpreters is definitely one of the biggest challenges, so much so that I decided to make it a professional and research interest of mine 🙂

Being an academic who is deaf (and a woman) is another challenge: when you have critical opinions and are used to voicing these, you are quickly seen as ‘angry’, ‘emotional’, or ‘irritated’.

Not linked to being a deaf academic, but as a researcher in general:

  • At this stage in my career, I find a real challenge is having to adapt research agendas based on your institution/employer/funding, which means I feel I can never really finish projects. People are asking me for publications, presentations, etc., based on my PhD or postdoc research (I haven’t even yet analysed all the data I collected during my postdoc!). I am now based at an applied university, which means I need to do practice-based research. This is really interesting and fun to do, but also means it’s not always so easy to connect this with the other stuff I was working on before.
  • Linked to the previous point: academia can be overwhelming. The work is never finished, there is always that one paper to finish, that one grant to follow up on, that one article that is still on your to-read list. There is competition, you need to publish, teach, and do admin. As deaf academics, we do all the extra emotional labor too, that is often invisible: working with sign language interpreters (it’s not just working with them!; it’s looking for the right ones, preparing them, debriefing them, etc.), educating colleagues about accessibility issues, coping with hearing fragility. Me and many of my deaf colleagues also do a lot of volunteer work to support other deaf academics and Deaf Studies & sign language researchers (for example our work for Acadeafic and Dr Deaf, …). I had a burn-out last year and I don’t want to go through that again. So I firmly set boundaries, I let people know those boundaries, I don’t feel guilty for not working overtime, I unplug now and then.

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

Sign language interpreters are necessary to do my job, but since I’ve only been at my institution in the Netherlands for just over a year and have to work in NGT increasingly in professional/academic contexts, I’m still finding out which NGT interpreters ‘match’ with me for which professional contexts. I’d like to work with a few designated ones but am currently in the ‘trial and error’ phase still, which is frustrating often.

I’d like to use caption services more. As deaf academics (in Europe) sign language interpreters are often the accommodation we request or are given, but watching an academic presentation in English with for example a BSL interpreter (even a very good one), is still a challenge. People tend to think that with interpreters we have ‘access’ and that’s all there is to it. But that’s actually not true. Interpreters are an accommodation we have to work with to make it work, so to say. The source is in one language, while the output is in another. You don’t have to be a language researcher to know how much can get lost in translation. When we see interpreters’ signed utterances we need to do the mental work of understanding the meaning and how it relates to the source language and the concepts the speaker is using for example. Sometimes it is just easier, and requires much less mental load, to follow the presentation in the same language and modality. And for Q&A and networking, use interpreters.

Tell us about your website, Acadeafic.

I started Acadeafic with friends/colleagues Annelies Kusters, Joseph Murray and Erin Moriarty (also deaf academics) in May 2019. Acadeafic is a deaf-curated, multi-author platform that allows Deaf Studies and sign language researchers to share their work in a bite-sized format. There is an amazing output of research on Deaf Studies and sign languages, but as a research community we want to do more to share our work with audiences within and beyond academia, on an open-access basis, and in formats that are easier do digest than full-length academic prose. All our posts are bilingual, with a vlog in any sign language the author prefers and a blog in English. Most of our posts are based on recently published articles or chapters. We also host series of posts based on special issues or edited volumes. We are keen to support junior researchers in promoting their work. We also offer a space for editorials or opinion pieces related to (doing) Deaf Studies and sign language research, for example working with sign language interpreters, navigating academia as a deaf scholar, research methodology and ethics, and access to academic discourse. All our submissions go through peer review conducted by Acadeafic and/or external reviewers, also all deaf. So if you are a Deaf Studies and/or sign language researcher and want to promote your work, get in touch!

What advice would you give your former self?

You’re not here to please everyone. 

Any funny stories you want to share?

A few years ago I was at an academic conference dinner. We were at a mixed deaf/hearing table, and there was one sign language interpreter with us. I was talking with one hearing academic and when we had a brief pause, the interpreter left a bit to take a break. I left my phone in my room and I didn’t have anything else to write with to continue the conversation with him, so I gestured ‘phone’ to him in the hopes that he would take out his phone and type. Instead he took out a bit of paper and handed me his phone number. I was like ‘oh’ and he quickly realized that this wasn’t what I was asking him. It was embarrassing, but funny, and the ice was broken for the rest of the evening. 


Who am I at a Research Conference: the Deaf Person or the Scientist?

– Caroline

I look forward to and dread research conferences simultaneously.

I look forward to seeing my friends and colleagues, learning about new research, and exercising my neurons as I ponder different research topics and directions. I eagerly anticipate exploring the different cities and countries where the conferences are held. I long for those few days where I control my own schedule.

At the same time, I dread discovering that the provided access services are inadequate to catch the various research presentations and posters—the interpreting and/or captioning quality ranges from poor to excellent, so the significance of getting the gist of what is new research is >0.05 (I know I shouldn’t be using 0.05 as a baseline, my dear statistician friends). I also worry whether the quality of my research work is reflected accurately by the interpreters for my presentations.

But what I dread the most is being viewed as the deafperson, not as a scientist. At the first few conferences I attended, people would come up to me and ask questions such as, “How do you come up with signs for phytoplankton or photorespiration?” Often, they would try to strike up a conversation with the interpreter right in front of me and commiserate about how hard it must be to keep up with the scientific jargon, especially with people speaking at warp speeds. These conversations were always awkward since the interpreters know they cannot have personal conversations while they are interpreting. They would look to me for guidance on how to handle the situations, since they knew the protocol, even if my colleagues did not.

solomon mid post

I’ve mastered responding with a strained smile on my face, “Yes, it isn’t easy. By the way, what is yourresearch on? And do you have a poster or talk here?” Most people get the hint and are more than happy to talk about their own research. After twenty years in the field, these encounters become less frequent, but they still occur.

Those encounters have become rarer over time because I have become more assertive about going up to other researchers to ask them about their work; but that assertiveness and confidence has come in part because of my growing scientific reputation in the field of estuarine science and oceanography. Now, I suspect that if I stand around and wait for people to come talk to me, they either won’t come due to fear, or they will come with the dreadedquestions. I truly appreciate my colleagues who come to me to discuss science.

At academic conferences, I am a scientist first, and deaf person second.

Caroline_SolomonDr. Solomon has been a faculty member at Gallaudet since 2000.  She also is an adjunct at the University of Maryland Center for Environmental Science, and serves on masters and doctoral committees for research on increasing participation of deaf and hard of hearing people in STEM and estuarine science especially in the areas of nutrient and microbial dynamics.

 

 

 

 

 

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

-Michele

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

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

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

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

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

2017 stats

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

References

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

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

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

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

Using FM Systems at Conferences

progress-Michele

You’re wearing your hearing aids, sitting at a conference presentation, feeling confident that you’re understanding what’s going on, when it happens. The audience reacts to something the speaker said, and you have no idea why. Until then, you’d thought that you were grasping enough of the presentation, but you’ve clearly missed something good. Reality check: your hearing aids might be good but you still can’t hear like a hearing person. I’ve been there. And I’ve found that when I’ve been able to get a good FM system set up at conferences, I can catch a lot more of the speaker’s remarks and subsequent discussions than when I try and go it alone with just my hearing aids. Getting FM systems to work effectively, however, can sometimes challenge even the most intrepid academic. So I thought that I would share what I’ve learned through several decades of requesting and using FM systems at conferences. I’ve occasionally used Real-Time Captioning (CART) and ASL interpreters at conferences, but someone more expert should post about those.

What is an FM system?

Frequency Modulation (FM) systems involve a paired transmitter and receiver that provide additional amplification to either a headset or, even better, directly to our hearing aids. That additional amplification can be invaluable in some difficult-to-hear situations. The audio signal is transmitted via waves within a narrow range of the FM spectrum—yup, the same as non-satellite radio. FM systems are sometimes called Assistive Listening Devices (ALDS). At conferences these systems can help by amplifying speakers’ remarks, audience questions, and ensuing discussions, as well as elevating conversations around posters above background noise.

Requesting FM systems at large conferences in the US

Because of the Americans with Disabilities Act (ADA), large conferences in the US will have a box to check on the registration page to request accommodation. If they provide an open response box, I typically write:

I need a FM system with 60 decibels of undistorted gain. The system should have a neckloop or induction earhooks that work with the telecoil in my hearing aids. Headsets are not compatible with my hearing aids.” 

Through years of bad experiences, I’ve learned to provide very specific instructions.

heads set
Headset offered at 2017 AGU

Although I provide these specifics, I am often disappointed when I arrive at the
conference center. Many conference FM systems are pretty weak and only provide only a small amount of clear amplification (maybe 15-20 dB). This might be okay for someone who has a mild hearing loss—such as some with recently acquired loss—but it pretty useless for me. At other conferences, such as at the 2017 American Geophysical Union, I’m offered a setup as in the photo at right.

  • Me: These are not compatible with hearing aids
  • Clueless but earnest conference liaison: Oh yes, they are! You just put the headset over your ears.
  • Me: Um no. I use behind-the-ear hearing aids and my microphones are behind my ears. This is why I specifically requested a neckloop to directly communicate with the telecoil in my hearing aids.
  • Clueless but earnest conference liaison: A what?
  • Me:
  • Clueless but earnest conference liaison: Oh. Well, why don’t you just take your hearing aids out and use the headset instead?
  • Me: Umm no. My hearing aids are tuned for my particular frequency spectrum of hearing loss. I asked for 60 decibels gain for the system to boost above what my hearing aids offer and to compensate for people speaking softly, people not speaking directly into the microphone. . . That sort of thing.
  • Clueless but earnest conference liaison: Huh. Well, we don’t have anything like that.

After such unfruitful conversations I usually begin sorting out my own accommodations with my personal FM system (more on that in a bit). The few times that I’ve pushed for conferences or their sites to find an neckloop or a stronger FM system, I’ve never had success. For example, at one conference, a team of six technicians met with me to tell me that there was not a single induction neckloop to be had in the entire city of New Orleans—their hands were tied. Sure.

Warning about accommodation requests:Although conferences are becoming more responsive, I’ve found that about a third of the time, my requests on the registration forms are ignored. I never hear back from the conference, and when I show up they have no idea what I’m talking about. So as part of my conference prep, I now contact them about a month before the meeting if I haven’t received notification. I also budget an extra hour or two when I first arrive at the conference to sort out the accommodations.

Paired FM systems versus direct wired rooms

With paired FM systems, one transmitter is paired to one receiver that you carry with you. The transmitter must be set up in the conference room in advance of the session and is usually patched into the sound system so that your receiver picks up signals directly from the room’s microphones. In order to set this up, large conferences need to know which sessions you will attend several weeks ahead of time. This means that you can’t pop from one session to another as our hearing peers might do at large conferences. Also, if two HoH people want to attend the same session, the room may need to have two transmitters patched into the sound system.

headsets
The 2018 AGU meeting provided headsets and telecoil loops. Progress!

Newer (or newly renovated since 2012) convention centers in the US and UK may have built-in transmitters throughout the convention hall. This means that you can take any receiver into any room and instantly get amplification without setting things up ahead of time. This flexibility is quite nice! The picture at right shows a charging rack of FM headsets and induction loops for the Washington DC Convention Center. I was really looking forward to using those at the 2018 AGU meeting, but unfortunately, all the sessions in my discipline were in the Marriott hotel next door and the system didn’t work at all there.

Small conferences and meetings outside of the US

For small conferences, as well as meetings outside of the US where the ADA is not in effect, I bring my personal FM system. At the top of this post are pictures of the FM system that I first started using around 1994 (left) and my current outdated fourteen-year-old system (middle). I can’t get this set repaired anymore, so I’m going to get a new one like the one on the right. Some benefits of personal systems over conference-provided systems is that personal systems are more powerful. My first FM system had audio boots that hooked directly to my hearing aids (left picture) which reduces signal degradation that can happen with neckloops (middle image).

At small conferences, I put my transmitter at the lectern before each session to help me adaptorscatch more of the speaker’s presentation. Alas, this doesn’t help with questions and discussions, which can be a large challenge. At some conferences where microphones are used for questions and discussions, I ask the AV crew to patch my transmitter into the sound system. Right is a picture of all the different adaptors that I bring with me to ensure that my transmitter will work with the venue’s sound system. Some of these may be outdated.

fm at micWhile patching my transmitter into the sound system has worked very well in the past, I’ve had problems lately. Maybe sound systems have become more fussy about patching in auxiliary outputs. I am also not sure whether the newest FM systems, which use Bluetooth rather than FM signal, even have input jacks. Another hack that I came up with is to put my transmitter in front of a speaker (the photo at left is my transmitter taped to a microphone pole in front of a speaker stand at the 2018 Southern California Earthquake Center annual meeting). This hack allowed me to access the presentations and discussions that used microphones.

FM systems in poster halls

If the poster hall is crowded, you can aim the microphone of the FM system transmitter towards any speaker to elevate their voice above the background noise. This approach has worked well for me when using my own FM system. Note that the systems provided by convention centers are not mobile; it is best to bring your own to use in poster halls.

FM systems are expensive (~US$1000 – $4000), and like hearing aids, are often not covered by US health insurance. Full-time students in the US are eligible for personal FM systems through vocational rehab (degree of coverage depends on income). Many audiologists may not be aware of this (my own weren’t!), but check with the disability office at your university and they can hook you up with your state’s vocational rehab office. These FM systems are worth getting before you graduate! Some employers do purchase FM systems for their workers because they can be critical for career success; however, I’ve yet to meet an academic who has successfully negotiated an FM system from their employer (and would love to hear if you have). While insurance didn’t cover my last FM system, I was able to use a health spending account through my employer that saved me from paying taxes on the device. It is my understanding that outside of the US, personal FM systems are nearly always paid for out of pocket.

Why am I so pushy?

Since I end up using my personal FM system most of the time at large conferences, you might wonder why I keep requesting accommodations. I do so because I want the conference center to know that we are here. I want them to know that deaf/HoH academics should be considered when they are planning their meetings and ADA accommodations. If we don’t make waves, they will believe that the level of accommodation currently offered is satisfactory. I’ve heard too many stories of older academics who stop attending conferences because of declining hearing, and younger HoH academics discouraged from academic careers because of the difficulty of networking at large conferences. We owe it to ourselves and our community to be counted, advocate for flexible, effective amplification systems, and share our successful strategies.

Is my experience consistent with your own? What successful strategies have you used for FM systems at conferences?

Deaf Gain -> diverse and stronger research

Woman gesturing and wearing behind the ear hearing aids
photo by John Solem (UMass Magazine)

-Michele

In May I received the outstanding researcher award from the College of Natural Sciences at UMass Amherst. This was a great honor and I even got to give a 3-minute acceptance speech. While the speech starts with some of the challenges, the main point is that my deafness shapes my approach to science in ways that benefit my research. PhD student extraordinaire, Laura Fattaruso, made a video of me re-enacting the speech and here is the transcript:

Academic success was not always expected of me. I have a severe-profound high-frequency hearing loss and was language delayed in my early education. The letters on the page don’t match the sounds that I hear so it took until 2nd grade for me to figure out the basics of reading.  I also had years of speech therapy to learn how to pronounce sounds that I can’t hear.  Just before middle school, some visual-based aptitude tests showed I actually had some talent and I also started to do well in math.  So, then teachers started expecting more of me and as you probably figured out, I caught up well enough.

Now, as a professor at a University that serves a predominantly hearing community, my broken ears are a nuisance sometimes. But this 3-minute speech is not about overcoming challenges.  Instead, I want to talk about something called <signing Deaf gain>. This sign is translated into English as Deaf gain or Deaf benefit. This term coined by Gallaudet scholars describes the value that Deaf and Hard-of-Hearing people provide to the larger community because of their differences.  Our ecology colleagues tell us that more diverse ecological communities can better withstand stress than homogenous communities – so too with science communities. All of our differences make CNS stronger.

Here are three examples of deaf gain in my research approach

Deaf gain1: My way of doing research is intensely visual.  My students know well that I have to show 3D concepts in the air with my hands and sketch whenever we do science.  I don’t believe it until I can see it.  We use the figures in our papers to tell the scientific story.  In this way, my research is not about elegant verbal arguments and instead focuses on connections between ideas and demonstration of geologic processes.   

Deaf gain 2: Deaf are known for being blunt. My students will tell you that my reviews can sometimes be painfully blunt. For deaf scientists, being understood is never taken for granted.  So, we strive for clear and direct communication of our science.

Deaf gain 3: Being deaf in a hearing world requires stamina, courage, empathy, self-advocacy, a flexible neck to lip read people in the corners of the room and a sense of humor.  An added benefit is being able to accessorize using blue hearing aids with blue glitter molds that match any outfit.

 I’ve been lucky to have great students and colleagues who have join up in my Deaf way of science and we’ve had a blast.  Thank you.

Do you share some of these characteristics?  Are there ways that deaf/HoH gain has shaped your scholarship or research?

Making an impact at high-stakes conferences

meeting presentation

-Michele

You are at a conference with ~150 experts in your sub-discipline from all around the world. The purpose of the conference is to advance our understanding by fostering in depth group discussions after provocative talks. This is the kind of conference where careers are made through well-delivered talks and insightful contributions to the discussion.  While hearing academics may relish the opportunity to participate in such a conference, for us deaf/HoH academic these conferences are obstacles to our success.

For these small conferences you are likely the only person who needs accommodation for deafness and because the conference is small they are likely not prepared to accommodate your needs. This means that you may spend a lot of time and effort figuring out accommodations that will work for you.  If you have a personal FM system, you can put it at the podium, but you will miss the questions. If you sit up front to hear the speaker, you will need to turn around to speech-read the discussion contributors. If you are able to have CART (real time captioning) or interpreters, they might quickly become lost in the technical language and variety of accents at an international conference of specialists. If you bring your own sign languages interpreters who are familiar with your expertise, you can reduce this problem; but interpreter lag can impede participating in fast-paced discussions. No matter what strategies you use, let’s face it, you are working twice as hard just to understand the material as your hearing neighbor and you aren’t going to get 100% of the information.

A high stakes conference with non-ideal lecture and discussion format can be a major career challenge for deaf/HoH academics!

You want people at specialty conferences to know that you know your stuff and have good ideas.  If you can’t do this by contributing to the group discussion at these high stakes conferences, can you be successful in your field? I think so and I will share some the approaches that have worked for me (full professor, moderate-profound loss, good speech reading skills).

I almost never speak up in the discussions.  The high probability of me asking a question that everyone knows the answer to because they heard the issue discussed seems too risky.  While I admire folks who can say “Maybe this was explained and I didn’t catch it, but (insert question)” I haven’t been able to do this at high-stakes conferences. My fear is that my colleagues will think that I wasn’t paying attention and dozed off when the topic was discussed. The truth is that even using 120% of my ‘attention’, I’m going to miss a lot of the discussion – but hearing people don’t often understand that so they may presume I was lazily dozing off.

The good news is that a lot of the networking at these conferences happens outside of the auditorium. We deaf/HoH can get our networking game going during meals, poster sessions, the food/beverage line, walking around the venue etc.  Sometimes, I seek people out for research conversations with pre-planned questions to help launch the discussion.   These informal settings are not without challenges (subjects of other blog posts!) but you have more control over these settings. For example, you can suggest moving a small group discussion outside of the noisy poster hall, your requests for clarification are more acceptable in small groups and you may have an opportunity to educate folks on the challenges of your deafness. While, your hearing peers will make clever comments in the formal group discussion and immediately earn the admiration of the big-shots, you can capture their attention through multiple small or one-on-one thoughtful discussions. It takes a bit longer this way, for sure.  What I’ve found is that those one-on-one discussions provide rich foundation for long-standing collaborations and friendships. For me, this has been the most rewarding aspect of high-stakes conferences.

Note: This blog was drafted at a high-stakes Gordon conference on Rock Deformation during a talk that was utterly indecipherable to me.  Writing this, instead of struggling with the talk, was my way of saving my energy for coffee break discussions where my game will be on.  I got this!