Category Archives: grad school

And I knew the silence of the world

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.


–Stephen

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
Still remains
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?
No plan
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
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….. 

Hey!
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”

video with images and music that capture Stephen’s journey

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.

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

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

–Arrianna

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

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

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

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

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

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

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

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

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

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

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

(Parent 2016, 528)

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

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

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

References:

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

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

Profile: Alex Lu

PhD Student, University of Toronto, Canada

Field of expertise: Computational Biology

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

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

Background

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

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

How did you get to where you are?

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

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

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

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

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

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

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

What advice would you give your former self?

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

Any funny stories you want to share?

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

The sound we can see: working with hearing loss in the field

When I was 19 I went for a checkup with an audiologist and found out that I was hearing only 90% of what I should be. The doctor said that for my age, this was a high level of hearing loss, and attributed it possibly to the intense course of antibiotics I took for kidney failure when I was one year old. He suggested that I come back yearly to repeat the hearing exam, to verify if my ability further decreased below my current hearing levels. Of course I ignored this advice and never went back. When I started my graduate studies six years later, I decided it was finally time to visit the audiologist again, because I discovered that I could not hear the species of frog I had decided to base my research on. This was a very scary moment for me. How did I find myself in this situation?

In the last year of my undergraduate studies I took an ecology course and fell in love with the topic. I knew I wanted to earn a master’s degree in ecology, ideally working with animal populations. In Brazil, one has to take a standardized exam to enter a graduate program. I traveled 440 km to take the test and passed; I began my studies in the Federal University of Paraná located in Curitiba, in the south of Brazil. Among all the available mentors, there was one who carried out research on ecological dynamics of insects and anuran amphibians. I chose his lab and wrote a project proposal examining the population dynamics of an endemic species of stream frog (Hylodes heyeri) in the Atlantic Forest in Brazil, specifically Pico do Marumbi State Park, Piraquara, in the state of Paraná. Much of what I was to be doing was completely new to me: I had never worked with frogs and I also had never practiced the mark-and-recapture method. I thus faced a steep learning curve and had to learn a LOT about lab and fieldwork from my team and my mentor. In my first field outing, during which I was to learn how to identify and capture the species I would study, I discovered that I could not hear the frog. A labmate who accompanied me to the field said, “Are you listening? The frog is so close to us.” He thought I was not hearing the frog due to lack of experience, or because of the background noise of the stream. I worried that something else was amiss, and this finally prompted me to go back to my audiologist. There, I discovered that I had lost 2% more of my hearing, and this loss compromised treble sounds, those in the range of high to very high frequencies, precisely overlapping my frog’s vocalizations.

Now, I’m a PhD student and I use hearing aids programmed specifically for my hearing loss, which primarily encompasses frequencies above 4000 Hz. I was initially ashamed to wear hearing aids because people mocked them. But I didn’t consider changing projects, because I knew I could get help localizing the frog. I also knew there would be ways for me to analyze the sound without necessarily hearing it. Even with hearing aids, however, I can only hear the call of my frog when I am no more than 4 meters away. Other members of my lab can detect the sound of the frog from much farther away, even when they are 20 meters or more from the stream. This means that for every survey I carry out in the field, I need a person to accompany me to guide me to the frog, using their sense of hearing to identify the sound. But the assistance I receive in the field goes beyond locating my frog; the field can be dangerous for many reasons: I may not hear dangerous animals—such as puma, collared peccary, or leopards—approaching; and I may lose track of my team if people call me from too far away. Even for scientists without hearing loss, it is advisable not to carry out fieldwork alone.

In recent years, I have had the opportunity to learn Brazilian sign language (LIBRAS) in graduate courses. I am happy that it is a requirement for my degree! When I am in the field I communicate primarily with gestures. I am lucky that my frogs are diurnal, because I am able to see my companions in the field, making communication much easier. Once my companion hears the frog, they look at me so I can read their lips or we make gestures so as to not scare the frogs. Sometimes I use headphones, point the microphone of my recorder in the general direction of the frog, and increase the volume to better understand where the sound comes from—this trick of using my main research tool (my recorder) to find my frogs was taught to me by a friend who also carried out research in bioacoustics and had the challenge of finding a tiny mountain frog species that hid in leaf-litter (thank you, André Confetti). My frogs are also tiny, only 4 cm long. They camouflage in the streams and spook very easily, but in order to obtain my data, I need to get as close as 50 cm from the frog. Only then can I really start. The aim of my work is to analyze the effect of anthropogenic noise (such as traffic road sounds transmitted by playback) on frog communication. Once I am in position, I can play the anthropogenic sound, and record the frog’s call. I take these recordings back to the lab and experience the most rewarding aspect of my efforts to find these frogs. The recordings are transformed into graphs of the frequency and length of each call. Although I cannot hear the sounds my frog makes, I can see them! After seeing the sound I can analyze several call variables and calculate various statistics.

Would I recommend field work such as mine to somebody who finds themselves in my predicament? If you are open to creative workarounds, such fieldwork is possible for all. Having a field companion, using signs to communicate, and making use of the amplification provided by my recording equipment has solved the majority of my problems. Most important of all, having support from your mentor and other people who can help and you can trust is crucial. I do not intend to continue with bioacoustics research after I graduate, but if I need to mentor any students in the area, I’ll be happy to do it. I worry about my hearing loss too, in thinking of how it will affect my teaching in the future, because sometimes I hear words incorrectly and confuse their meaning. But I recently exposed my hearing loss in an interview; reading more at The Mind Hears and on other blogs has inspired me to worry less about my hearing loss and to continue to forge ahead in my career.

 

Biography: My name is Michelle Micarelli Struett and I am a doctoral candidate in the Graduate Program in Ecology and Conservation (where I also received my MS) at the Federal University of Paraná in Curitiba, Paraná, Brazil. My undergraduate was at Maringá State University in Maringá, which is also in Paraná. I am interested in animal behavior, especially in frogs, and in my research will examine multi-modal communication in the Brazilian Torrent Frog (Hylodes heyeri). This unique frog can sing from one or both sides of its mouth (it has two vocal sacs), depending on context. I will attempt to determine what that context is that stimulates those two possibilities (auditive, visual, or tactile), and how anthropogenic noise may interfere with communication and social interactions in this frog. Despite my hearing loss (which primarily encompasses frequencies above 4000 Hz), I have not been constrained from working with frog calls and bioacoustics.