Category Archives: grad school

Writing reference letters for disabled mentees

This post was originally published as an opinion piece within Inside Higher Education in February 2022. Since then, I’ve learned that some graduate schools in the US ask that letter writers not mention disability, citing section 5.04 of the US Education Reform Act. In my opinion, keeping disability or deafness out of reference letters misses critical opportunities both for conversations with mentees about disclosure and for demonstrating how disabled experiences enhance traits needed for success, thereby rejecting the deficit model. If done thoughtfully, such efforts can empower disabled or deaf mentees, de-stigmatize disability and erode academic ableism.

Maybe the best approach depends on the situation. What do you think?

— Michele


Reference letter–writing season is upon us, and you may be wondering how to approach writing about the disabilities of students and colleagues you are recommending. Letters of reference are critical components of admissions, hiring and promotion. But because letter readers tend to read between the lines, even just mentioning a disability can be a red flag, as Amy Vidali, an associate professor at the University of Colorado at Denver, has noted. For example, the decision of when/how to disclose deafness in the job search came up often when The Mind Hears surveyed deaf and hard of hearing academics about their job search experiences.

As a part-deaf full professor who has navigated her entire career with a disability, I’ve been on all sides of the desk. I’ve been the mentee cringing at the misrepresentation of my disability, I’ve been the mentor wondering how to frame my mentee’s skills in the best light and I’ve been the letter reader assessing strengths and weaknesses of candidates. Here, I offer some specific suggestions.

You should never disclose someone’s disability without their approval. Even if someone has a visible disability, the letter readers may not yet have met your mentee. Please don’t presume that disclosing disability benefits candidates because “the committee likes to see disability for diversity.” Committees committed to equity are still vulnerable to the pervasive ableism that drives discrimination and harassment of people with disabilities within academe and our society. Admissions and hiring committees are much more likely to admit/hire an abled person.

For example, the U.S. Bureau of Labor statistics reports that, in 2020, only 26 percent of disabled people with bachelor’s degrees were employed, compared to 72 percent of able-bodied people with bachelor’s degrees. Asking your mentee for approval to mention their disability need not be awkward if you are prepared to explain why you think that mentioning their disability in your letter would be beneficial.

Guidelines for Having the Conversation

If you haven’t already, ask how the person requesting the reference letter describes their disability. Do they use person-first or disability-first language? Some folks prefer medical based terms like “hearing impaired,” while others prefer culture-based terms like “Deaf” (with a capital “D”). In my case, I prefer “part-deaf” or “part-Deaf” to either “hard of hearing” or “deaf,” because it expresses that while I have residual hearing, my hearing loss is significant enough that just speaking a little louder is not going to accommodate my disability. The descriptor “part-deaf” is not yet standard, so I greatly appreciate it when folks check in with me about how I describe my disability.

Please don’t guess the preferences of your mentee. Also, consider that some people may not want you to describe them as disabled and would prefer other labels such as “neurodiverse,” “having chronic illness,” “Deaf” and so on.

When explaining why you want to mention their disability in your letter, share with your mentee specific character traits that you notice them employing as they navigate challenges associated with their disability. Are they a problem solver? Do they show resilience? Are they a great self-advocate?

My advice is not to mention any accommodations that your disabled mentee uses. While you might be tempted to show that accommodations “fix the disability,” the deficit framing doesn’t center your mentee’s skills and provides the letter reader with ableist reasons to rank your mentee lower than other abled applicants or nominees.

We don’t often get opportunities to tell people about the strengths that we see in them, and this conversation with your mentee is a great opportunity to do just that. Because of the widespread stigmatization of disability, we also rarely talk openly about it, so you might feel uncomfortable bringing up this topic.

My advice is to keep the conversation authentic and very specific. Drifting away from authenticity leaves you vulnerable to casting the disabled person as inspirational; such casting is othering and harmful. Stella Young called this phenomenon “inspiration porn,” because it serves to make the abled feel good while objectifying people with disabilities. Additionally, saying that a person inspires you centers your experience and not your mentee’s. Yes, this is tricky ground! You may, in fact, find someone inspiring. Yet keeping your characterizations authentic and specific helps avoid inspiration porn.

For example, instead of saying, “It is incredible how Michele managed to advance to full professor while disabled,” you could say, “Michele’s experiences as a disabled academic contribute to her success, as she has developed exceptional problem-solving skills, resilience when faced with inaccessible situations, self-advocacy to adjust to inaccessible situations and time/energy management to prioritize important tasks.” For your letter to be effective, you can also provide specific examples of those skills. You could follow up with, “For instance, in noisy settings that present a challenge for part-deaf folks, Michele either extracts critical information using visual cues or, if the conversation is lengthy or particularly important, she effectively self-advocates by adjusting the conversation toward a quieter setting and/or harnessing technologic solutions.

Last, ask your mentee what they would like you to emphasize in your letter. This is a good practice for any letter of recommendation, and Julie Posselt of the Inclusive Graduate Education Network offers other helpful equitable best practice for reference letters.

Guidelines for Writing Your Letter

Unless we use template letters of references with standard language, our letters will be subjective and vulnerable to either our own biases or the biases of the letter readers. But template letters don’t provide the rich information that guides hiring, admission and promotion decisions. What we can do instead is take a thoughtful and critical look at how we frame difference and disability in our letters of reference, as Vidali and Posselt have recommended. Here are some first steps.

Please don’t say that the person has “overcome their disability.” We live with our disabilities; we can’t erase them. We don’t say that first-generation college students overcome their families. Why say this about disability? In addition, the framing of the disabled person as an overcomer steers you well into the inspiration-porn minefield.

Instead, you can acknowledge that the disabled person faces disadvantages (describe specifics) with (insert adjective) skill and self-advocacy (followed by specific examples). This framing acknowledges that navigating life with a disability requires constant effort and draws attention to valuable skills.

Unless they say so, avoid writing, “Despite her disability …” or “You would never know that he has a disability.” Such phrases have strong ableist undertones. While your intention in writing those phrases is to ease concerns of the letter reader, this deficit framing does not center the skills of your mentee, which is the goal of your letter of reference.

I will add that mentioning the quality of speech of deaf and hard of hearing mentees in your letter focuses on the deficit of deafness and assimilation into predominantly hearing environments (see The Mind Hear’s post entitled Eloquence is overrated). Check with you mentee if they want their speech mentioned in the letter.

Finally, in your mentee’s conversation with you, they may say that they don’t want you mentioning their disability because either they don’t want to disclose or they plan to disclose in some other way. They know best how to present themselves.

Presentando The Mind Hears [La Mente Oye] a académicos de habla hispana

-translated by Ana

Our goal for The Mind Hears is to have it serve as a global resource for deaf and HoH (hard of hearing) academics. Though countries differ markedly in the degree of resources provided to deaf/HoH individuals, our hope is that this blog can be a refuge and forum for all, regardless of where you are. To date, however, most of our blog contributors and followers have been in the US and Europe. Taking advantage of the fact that Ana is Colombian, we have reproduced our Mission Statement here in Spanish in the hopes of reaching our Spanish-speaking friends and colleagues worldwide. We welcome help with translating our mission statement to other languages.

Brightly colored word cloud in Spanish of the most common words appearing in the post below. Nube de palabras en varios colores de las palabras más comunes en la entrada de blog.

En el año 2018, Michele Cooke y yo, ambas profesoras en la Universidad de Massachusetts, Amherst, USA, decidimos empezar un blog que reflejara nuestras experiencias como personas con sordera en un ambiente académico. Así nació “The Mind Hears [La Mente Oye]”. Dada nuestra localización geográfica, las entradas del blog han sido – hasta ahora – publicadas en inglés. Con la esperanza de que este blog llegue a ser un recurso global para personas sordas trabajando en universidades, traducimos aquí la misión del blog al español. Esperamos que esto lleve a nuestros colegas de habla hispana a contribuir entradas al blog en el futuro.

Misión

Este blog está escrito por y para académicos en cualquier etapa de su carrera con algún grado de sordera. Aquí usamos el término “sordo” para representar a todas las personas con discapacidad auditiva, independientemente del grado de sordera y del modo de comunicación preferido (ya sea oral o por lengua de señas). Los objetivos de este blog son:

  • Proporcionar un foro para la colaboración abierta entre académicos sordos  
  • Compartir estrategias para prosperar con sordera en el mundo académico 
  • Fomentar una red de académicos sordos que promuevan estrategias de comunicación inclusivas en las instituciones académicas.

¿Por qué un blog?

Como académicos sordos, continuamente hemos enfrentado obstáculos en el camino al éxito profesional en entornos diseñados para y por personas sin discapacidades auditivas. Nuestras experiencias no han sido todas iguales. Dependiendo de  nuestros antecedentes/proveniencia y de las instituciones en las que nos encontramos, es probable que tengamos diferencias en acceso a recursos y en la capacidad de abogar por si mismos. Debido a que la sordera puede ser una discapacidad invisible, hemos a menudo perdido oportunidades para reconocernos y aprender estrategias efectivas los unos de los otros. A través de este blog, esperamos alcanzar a académicos sordos y con problemas de audición en todo el mundo, tanto para reducir el aislamiento, como para armar una “caja de herramientas” comunitaria de recursos e ideas. La sordera es variable y puede afectarnos de muchas y diferentes maneras, pero a través de la experiencia compartida del blog, esperamos brindar algo de valor a todos aquellos que visitan y contribuyen a nuestras discusiones.

¿Por qué académicos?

Como académicos, estamos involucrados en muchas actividades que requieren comunicación continua, a menudo con colegas y estudiantes oyentes. Dictamos clases, presentamos seminarios, participamos en comités y páneles de asesoría, moderamos sesiones de discusión y dirigimos reuniones de grupo, participamos en actividades de divulgación pública y nos comunicamos con la prensa. Muchos de los impedimentos a la comunicación que se presentan en estas actividades son exclusivos al entorno académico — y el éxito de todos los académicos, oyentes o sordos, depende de la comunicación productiva en estas situaciones. Sin embargo, los académicos sordos a menudo no encontramos soluciones adecuadas para los obstáculos a la comunicación: nuestros audiólogos no tienen suficientes clientes académicos, y las oficinas de servicios para discapacitados en las universidades están diseñadas para servir principalmente a los estudiantes de pregrado (no profesores, estudiantes de posgrado u otros académicos). Al centrarnos en la comunidad académica sorda, particularmente a niveles después del pregrado, tenemos la intención de crear un recurso personalizado que ayude a todos los académicos que se identifican como sordos a alcanzar nuestro potencial profesional.

¿Por qué “The Mind Hears [La Mente Oye]”?

El título de nuestro blog proviene de una carta escrita por el autor Víctor Hugo al educador sordo, Ferdinand Berthier. Hugo escribió:

“¿Qué importa la sordera del oído, cuando la mente oye? La única sordera, la sordera verdadera, la sordera incurable, es la de la mente.”

Estas líneas encapsulan la poderosa idea que nuestro potencial para contribuir al ámbito académico, al conocimiento y a la sociedad no está limitado por nuestra capacidad o incapacidad de escuchar sonidos. Las dificultades que surgen al trabajar en entornos académicos dominados por la audición se pueden enfrentar con creatividad y resiliencia, las cuales son características de la mente. Las herramientas que las personas sordas usan para facilitar la comunicación, incluyendo la lengua de señas, la lectura labios, el uso de audífonos, los subtítulos y los implantes cocleares, por nombrar solo algunos, ilustran el potencial ilimitado del ingenio humano. La declaración de Hugo también refleja nuestra convicción de que la colaboración con la mente abierta a nuevas ideas, a la inclusión y a aquellos que abordan las cosas de manera diferente a la nuestra, puede beneficiarnos a todos. Ya sea que nos hayamos criado usando lengua de señas en la comunidad Sorda, o que recientemente hayamos perdido la audición, todos los que trabajamos en el mundo académico hemos desarrollado formas de ser exitosos. A veces podemos ver beneficios en nuestra sordera (por ejemplo, Deaf Gain), y otras veces nuestra sordera puede ser una carga no deseada (por ejemplo, Conquering faculty meetings (or not…)). Este blog es un hogar para todas estas perspectivas y experiencias. Esperamos que hallen en este blog un lugar de encuentro gratificante de mentes verdaderamente empoderadas, ingeniosas y abiertas.

Profile: Elli Harpum

Location: UCL, London UK 
Field of expertise: Quantum Physics
@victorianphysic

photo credit: Hannah Coleman

Tell us about your background

I have had hearing loss since I was 14 months old, having glue ear treated with grommets that led to scarring on my ear drums. I lip read as a child and this covered my hearing loss until I was in Sixth Form, when I contracted a severe ear infection in both ears. After treatment, I spent several years trying to find the cause of my hearing loss, but it wasn’t until after I had finished my BSc and MSc that I started to become involved in the Deaf community. My family are all hearing, and we are Christians. My brother is learning BSL and the rest of the family have all indicated that they would like to learn. I went to a local comprehensive, and then to a boarding school for sixth form where I was a day pupil. I then went to university in Cardiff for my BSc, and UCL for my MSc and am now working on my PhD.

How did you get to where you are?

I have always wanted to study Physics; my earliest memories are from stargazing and when I discovered I could study space as a career when I was 12 I was ecstatic. As I learned more Physics, I realised that space wasn’t even my favourite sub category of Physics- that belonged to magnetism. A family friend started a PhD in my teens and that was when I was determined to do one myself, in Physics. All I ever wanted to do was study Physics all the time. I wear an insulin pump, which is affected by magnetic fields. My biggest concern was that I would have to adapt my diabetes treatment so that I could study what I wanted to.

As I progressed through my BSc I realised that other people’s perceptions of me were always going to be my biggest challenge; for some reason my disabilities are the thing that people think are going to prevent me from achieving my goals. To mitigate this, I do what I do and I do it well. Just because I have a different work pattern or have to take extra days off when my diabetes gets in the way or I have another ear infection doesn’t mean I’m not an excellent physicist.

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

I work from home (which started way before the pandemic!) and am allowed to work flexible hours. I have captioners for video meetings, who have been trained in the vocabulary that is used in my field to make them much more accurate than automatic captions. 

What advice would you give your former self?

You work differently to other people, and that doesn’t make you wrong or worse than anybody else, or not able to be a Physicist. You are an excellent problem solver. Go to the GP and get treatment for depression and anxiety. It is not a failure to need help. You will feel so much more yourself when your brain chemicals are balanced properly.

Any funny stories you want to share?

In my undergrad, I had concessions for my hearing loss, like I sat near the front of the lecture hall, etc. I was also allowed to ask lectures to shave their beards if it got in the way of lip reading!


Short bio:

Elli is a Quantum Physicist based in the UK. She is deaf, diabetic and disabled, and uses a wheelchair. Elli also wears an insulin pump with continuous glucose monitoring sensors, which can be a problem around magnets, her main research focus! Despite having multiple hearing problems and operations since childhood, she was only diagnosed in June 2020 with hearing loss, but has embraced her deaf identity since then, getting involved in Deaf Rainbow UK, her local Deaf Association and learning BSL. 

Elli is a passionate advocate for disabled academics and has spoken at several events about being a disabled woman in Physics. 

Elli did her BSc in Physics at Cardiff University, and her MSc at UCL. She is currently on a medical break from her PhD in Quantum Physics but intends to return to academia one day. In the meantime, she is writing a series of picture books about her disabilities for her friend’s daughter and a novel about being diagnosed and discovering the Deaf community in early adulthood, learning BSL, tutoring maths and physics, and being a Guide leader on Zoom. 

Elli is married to Sam, and they live in Cambridge, UK. Elli is currently persuading Sam that they need an academic cat!

New Year’s Resolution 2022: Making your in-person and remote workplaces accessible for your deaf/HoH colleagues

Man colored square post-it notes on a dark surface. Each post-it note bears a New Year's resolution, including one that says "make workplace accessible".

The new year brings a fresh start to our lives; it’s a natural time to reflect on the year past and make plans for the coming year. In what is becoming a The Mind Hears New Year tradition (see posts from 20192020, and 2021), we have updated our list of recommendations for making your workplace accessible. You can view and download the full list of recommendations for making your in-person and remote workplaces accessible for your deaf and hard of hearing colleagues at this link. Below we provide an outline of the best approaches for increasing workplace accessibility and provide links to blog posts that explore particular aspects in detail.

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

Sharing the work: With a google search you can find several resources on workplace accessibility for deaf/HoH employees, such as the Hearing Loss Association of America’s (HLAA) very useful employment toolkit. One drawback of these resources is that nearly all of the suggestions are framed as actions for the deaf/HoH employee. While deaf and hard of hearing academics need to be strong self-advocates and take steps to improve their accommodations, our hearing colleagues can help us tremendously by sharing the work and not expecting us to bear all of the burden of creating accessible workplaces. Speech reading conversations, planning accommodations and making sure that technology/accommodations function is never-ending and exhausting work that we do above and beyond our teaching, research, and service (see post on making an impact at high stakes conferencespost on conquering faculty meetings, and post on teaching very large classes). Your understanding and your help changing our workplaces can make a huge difference to us.  For example, if a speaker doesn’t repeat a question, ask them to repeat, even if you heard the question just fine. The people who didn’t hear the question are already stressed and fatigued from working hard to listen, so why expect them to do the added work of ensuring speakers repeat questions (see post on listening fatigue and post on the mental gymnastics of hearing device use)? Repeating the question benefits everyone. The changes you make today can also help your workplace align with equal opportunity requirements for best hiring practices (see The Mind Hears blog posts about applying for jobs when deaf/HoH hereand here).

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

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

Why mutual support matters: surviving as Deaf/HoH graduate students at a predominantly hearing institution

A white woman with a big smiling face pressed to her guide dog's face, they are both sitting and her arm is wrapped around him. She has straight long brown hair and is wearing a white and tan dress, and he is a black lab wearing a leather harness that says leaderdog.org.
Breanne Kisselstein
A white woman with blonde hair resting on her shoulders. She is wearing a black suit jacket, and smiling at the camera. She has blue eyes and freckles and a wide smile.
Anne Logan

The Mind Hears was excited to learn that Anne and Breanne are two deaf graduate students in the same School of Integrative Plant Sciences. So many of us navigate graduate school as the only deaf student in the university, much less the graduate program. So we caught up with Anne and Breanne to explore how having a compatriot in graduate school has impacted their experiences. We asked them these questions:

Tell us a bit about your background.

Tell us about your discovery that you were not the only deaf student when you started your graduate program.

Tell us of other ways that having deaf fellow students on campus have impacted you.

What other challenges have you found remain for you in grad school, despite having the support of deaf colleagues?


Tell us a bit about your background.

Breanne: I am a PhD candidate in Plant Pathology at Cornell University, and am researching the population genetics of a fungus that causes powdery mildew of grapevine. I have loved science since I was a little girl, and was inspired to pursue sciences due to all of the different rare diseases that have occurred in my family. I’ve always been fascinated by infectious diseases and molecular biology, and the idea of translating that to plant diseases and protecting our crops was very exciting to me for graduate school. I identify as DeafBlind, and was born in New York State with moderate to severe hearing loss; I lost my vision as a teenager due to the recessive genetic disorder known as Usher Syndrome. I began using ASL to communicate during my undergraduate years at RIT/NTID, but have since lost those skills. It has been hard being apart from a deaf community for so long. 

Anne: I am a PhD candidate in Horticulture at Cornell carrying out research in viticulture, by evaluating impacts of canopy management practices on above and below-ground parameters in grapevines. I’ve always been very passionate about fruit crop production and hope to go into extension, to teach students in the vineyard or orchard about management practices, to develop my own teaching videos on all things fruit crop and wine related in ASL, and one day, possibly to own a farm winery. I was born profoundly deaf in Connecticut and grew up with SimCom (Simultaneous Communication), initially learning SEE (Signed Exact English), then later, ASL, when I improved my fluency during my postgraduate years in Colorado. 


Tell us about your discovery that you were not the only deaf student when you started your graduate program.

Breanne: Day 1 during the School of Integrative Plant Sciences (SIPS) graduate school orientation I was wondering, “why does the interpreter keep looking at someone else?” If only you could hear my thoughts that day; I was so shocked (and thrilled!) when I pieced it together! Looking back, I have no idea who was presenting or what they were talking about. I was ecstatic to meet Anne that day, a fellow deaf woman and someone whose smile melted away the stress of that orientation day on this brand new campus.

Anne: It really made my day when I learned of Breanne — I got goosebumps when I learned that I wasn’t the only deaf person and just had to meet her. I am so proud of Breanne for pressing on, reading thousands of papers, looking at microscopes, advocating for herself to get her guide dog, advocating for others, and continuing to succeed in her program. And I love being able to just communicate with her in sign and not have to worry as much about my speech! She is probably one of the first Deaf, and first DeafBlind in academia at Cornell’s AgriTech campus in Geneva and is making a huge impact there. Meanwhile, I have been staying in Ithaca, where my research is, and have been working as a Graduate Community Advisor for the graduate, post-doc, and visiting scholar housing community on Cornell’s Ithaca campus. I have also been educating the residents in the graduate community, which is predominantly international students, about people with disabilities. These residents, whom I love so much (they spark so much joy), either have a lack of or a rudimentary understanding of people with disabilities, as their native countries either suppress or hide their disabled citizens. They have been incredibly open and have shared with me that their experiences as foreigners are in some ways similar: having to navigate American sociocultural norms and encountering miscommunication and misconceptions. Many of them have made a lot of effort to communicate with me when we had trouble understanding each other! It’s encouraging to see that. In this context, Breanne and I have shared our thoughts, feelings, and strategies for working with people who have not had exposure to the deaf and disability communities. 


Tell us of other ways that having deaf fellow students on campus have impacted you.

Breanne: In our second year, Anne introduced me to a new third Deaf person on campus — a new law student who already had a PhD, Dr. Caroline Block! We had a group facebook message going and we shared our experiences with the handful of ASL interpreters being assigned to us. We found out that whenever one of us requested a different interpreter, Cornell Student Disability Services would trade our interpreters mid-semester. When personal style is the issue, it’s okay to retain the interpreter for another student, but that wasn’t the case here. These interpreters sometimes didn’t have the experience necessary to interpret doctoral level courses, would check their phones mid-lectures, and would not wear black clothing despite knowing I’m blind. Thankfully, the three of us decided to meet with Student Disability Services and demanded that all ASL interpreters adhere to professional policy, and that one interpreter in particular never be hired for any other Cornell student again. Also, please let me note that we’ve also had some amazing interpreters, ones that are proficient and root for us every step of the way in our PhDs.

I remember early on in my studies being so stressed from the commuting to and from the Geneva campus, the culture shock of attending this big Ivy League university, and having to try and remember if I had requested access services (and if so, which ones?) for this event or that lecture. However, the absolute hardest part was falling victim to ‘the hidden curriculum,’ the unwritten norms and unspoken expectations that many underrepresented minority (URM) doctoral students are not aware of. My mother was the first in our family to go to college and got her Bachelor’s degree when I was growing up, and then I was the first in my family to pursue a PhD. It seemed like every graduate student in my department had at least one parent who had a PhD. I did not have many close friends in my program, and I felt so alone. Honestly, I had just kind of accepted this fate, that “okay, this is Cornell, they don’t have Deaf students or a deaf community in Ithaca”, that I truly did not think I should try to change things. I eventually realized it wasn’t just me. Cornell was not set up to support us and we needed to work exponentially harder than our peers just to survive. Without having Anne and Caroline to talk to for mutual support, I would have continued to think that my failure to thrive was my own fault.

On days where I did not feel like continuing on in the PhD program, I would still get out of bed and try because I knew that I represented so many Blind and disabled people out there who are told to pursue a career that “suits their blindness.” This is something my own family and friends told me too. As a disabled person who’s made it this far, I feel it is my duty to pave the way and make it easier for those who come after me. Anne and I are both trailblazers. I didn’t really know what was expected of me in terms of my doctoral research, but it was obvious that this place wasn’t inclusive to people like us so I buried myself in advocacy. I was committed to making Cornell a better and more equitable and inclusive place to go to graduate school. I was elected to and served on the Presidential Task Force that was formed in response to horrible incidents of racial bias in Ithaca, I served as the Graduate and Professional Student Assembly (GPSA) Student Advocacy Committee Chair, I wrote the mental health & well-being section of the Graduate and Professional Community Initiative (the GPSA’s 5 year strategic plan, administration use it to inform the decisions they make for our community), I worked closely with other student leaders, administration, deans, and people in Cornell Health and was very successful. 

However, I can honestly say that I’m not sure if I would have made it this far in the program if Anne weren’t here, starting a PhD in the plant sciences at the same exact time. Anne is the only other scientist I have ever been able to use ASL with at a Cornell event, and someone who was dealing with so many of the same struggles as me. Having her to validate my experiences is what kept me strong enough to self-advocate in the face of trial after trial. We both eventually passed our A exams (doctoral candidacy exams), and we both felt embarrassed about when we did it — as if there was an unspoken timeline that we did not achieve compared to our hearing peers. However, I firmly believe that what matters most is crossing the finish line and not how fast you got there. I know that we will both cheer each other on during our dissertation defenses and both be successful in passing those too. I cannot stress enough how knowledgeable and skilled Anne is as a viticulturist and scientific researcher. This plant sciences are blessed to have a woman like her pursuing her PhD in a lab and university that has global recognition, and any institution would be lucky to have the chance to hire someone who is both so scholarly yet so pleasant to work with.

Anne: Yes, I echo Breanne’s statements about our experiences. We had challenges with the interpreters initially. I have had several interpreters who are lovely people, but I had to ask them to be more professional (wearing black, etc). One of them kept violating professionalism and had been passed around among the deaf students, so, with the power of three outstanding deaf scholars, myself, Breanne, and Dr. Block, who now has a PhD and a JD, we collectively met with the Student Disability Services to ask that the interpreter be removed. Since then, the interpreting agency, when faced with an interpreter shortage, kept bringing them up, asking if we were okay with scheduling them if nobody was available. We all would decline and change our meetings to avoid that situation. We are grateful that Cornell Student Disability Services has changed a lot since then, with the hiring of a wonderful disability accommodation access specialist who made an effort to learn ASL and all about Deaf culture! This specialist has gone above and beyond, so that is a change we are very pleased about – they have been very easy for me to work with. Plus they have honored my request to work with specific interpreters and not once did they assign me to someone who is not a good fit for me. I was able to focus a lot more on my studies, since this communication specialist has been hired. My student disability counselor, who has a disability, is also fantastic, and together with the accommodation specialist and the new director, created the change we needed.

Also, Breanne has done outstanding work with the GPSA and Presidential Task Force, and the American Phytopathological Society (APS) conference committee, bringing a lot of much needed change. And this is something we’ve also noticed: there is the hidden curriculum, sociocultural norms, and much more that many miss, not only in the deaf/HoH+ community, but also those in the disabled, first gen, and other minority communities. We hope to see Cornell doing something about it, developing a workshop or two to address the hidden curriculum, so we have been bringing specific aspects to light through our social platforms. I have been blessed with people including my family and my advisor who brought the bulk of the hidden curriculum to light, but many others are not as lucky. So the pipeline in retaining STEM scholars is leaky as people drop out or change their career paths. Again, Breanne and I have conversed a lot through various mediums, brainstorming approaches to educate people while supporting each other. She and I have also been overcoming challenges in our respective PhD programs and cheered each other on when we reach milestones. I received a conditional pass on my A exam and did not become a PhD candidate until my fourth year, which I was very embarrassed about, compared to others in similar fields, yet Breanne really cheered me on. When she shares her accomplishments with me, I have so much pride and joy for her! 


What other challenges have you found remain for you in grad school, despite having the support of deaf colleagues?

Breanne: Cornell in general – it is not a welcoming or inclusive place for people like us, or us specifically. We’ve had faculty that are supposed to support, advise, and mentor us practically turn their backs on us at certain points in our programs. Even our professional support system is fragile. Luckily our support has grown, our access services are far better, and we now have an ASL professor on campus, Brenda Schertz. I am very hopeful that ASL and the deaf community will grow here. With this, I hope every student can find the mutual support Anne and I found in each other.

Additionally, I have since received my first guide dog which has significantly improved my personal and professional life. People in my department seemed confused as to why I needed one, I barely even used my white cane. However, they didn’t see me fall off the steps of the stairs inside the plant science building during my graduate school interview, my heart rate spike every time I stood at the top of the stairs when all the light bulbs were out, or all the bruises I had from travelling to/from work and running errands. I was so fortunate to have advisors that sought education directly from me on life as a scientist with a guide dog and supported me. In the United States, service dogs are allowed in all public facing businesses, even in hospitals, but individual institutions and professors often bar students and employees with service dogs from working in the laboratory. The only time a service dog should ever be barred from a scientific lab is if it would hurt the integrity of the research itself (i.e. an experiment on bird behavior when birds see dogs as predators) or if the research could seriously harm the service animal despite them wearing similar PPE to humans and staying out the way as service dogs are trained to do.I am deeply grateful for Cornell Student Disability Services and both of my advisors’ full support in this area, but the stress was certainly still there. I could so easily be denied access to my lab space like so many of my blind and disabled colleagues. I will not stop advocating for changes in this space because I have always firmly believed that science is for everyone. How can we recruit and retain diverse scientists if you reject a freshman from taking your introductory chemistry lab course because they have a service dog to mitigate their disability? Anne and I frequently speak out about our frustrations that despite endless conversations about ‘diversity,’ nobody seems to value disability as part of the beautiful spectrum of diverse and underrepresented people we need to support in STEM, and we are trying to change that.

When participating in a panel discussion in the DEAF ROC conference in Rochester, NY in 2019 called, “Successfully Advocating & Maintaining Relationships with Access Services,” I learned about PhD students having uniquely assigned ASL interpreters who they were able to develop a close working relationship with. This situation allows interpreters to learn  the subject matter as the students develop their expertise throughout the years, and allows for more seamless communication with advisors and labmates. It also removes the burden from Deaf students of trying to remember whether or not they have requested interpreters for an event yet, since interpreters essentially maintain their same meeting schedule. Bringing disabled people together to share experiences is crucial, because this arrangement  is something I never would have dreamed of asking for, yet would clearly benefit most Deaf PhD students. I firmly believe that this should become the norm for graduate school education, where 4-6 years are spent working tirelessly to become an expert and create new knowledge in a highly specialized field. In addition, I also look forward to continuing to work with Anne and other disabled colleagues, and pursuing a career that allows me to make drastic changes to make STEM more accessible, equitable, and inclusive for people of all historically underrepresented and marginalized backgrounds.

Anne: While we are very grateful for this opportunity to pursue a PhD at one of the world’s most renowned universities, Cornell generally needs a lot of advocacy to be kept accountable in adhering to its “any person, any study” motto. There is a lot administrators don’t know that we d/Deaf, DeafBlind, HoH, and other members of the disabled community continue to try to educate them about. There are things that we need in order to succeed, and we find ourselves advocating a lot for our needs to be met, and for policies to be put in place for future students so they can focus on their studies more. Unfortunately, there are still some people who question our abilities to do something simply based on our disability or hearing status. I have been lucky to be surrounded by excellent people in the viticulture and enology industry who are working to make the field more accessible. Breanne and I constantly have to remind people to look at the person, their passion and perseverance, as well as what they bring to the table, and not accept stereotypes held by the world. There are a couple of valuable resources already available including a wonderful paper done by our colleagues in Ecology and Evolutionary Biology (EEB) discussing strategies for at-risk scientists, and while they are helpful, there is still a gap when it comes to the deaf/HOH+ communities. I look forward to seeing a time when these gaps are all filled!

Due to recent racism and bias incidents, people at Cornell are beginning to open their minds to issues that disabled scholars too have been facing. Since we started in 2016, we have been advocating for captioning or transcriptions for podcasts and videos, contacting many clubs and departments, especially Cornell’s own Diversity and Inclusion office. Now Cornell does that by default much more often than they used to. There is still work to do but I am pleased with the progress we have made so far. I have been working with Cornell Dining to encourage them to develop alternative ways to order food, such as providing a paper and pen. While they listened to me, they decided to develop an app, “Get Set”, which allows students and faculty/staff to order ahead of time. It is a wonderful idea, however, there are people who don’t use smartphones and paper and pen are still not available. So that is a work in progress. 

Breanne and I plan to co-author a paper to share our experiences of working with deaf/HOH + scientists, especially those with intersecting identities, to provide a framework for future mentors and scholars One thing we will highlight is the need for a designated interpreter who is to be assigned to that student only, going with that student everywhere, as needed, and to be on call for last minute meetings, like statistical consulting drop ins. We would love to see more Black and other minority deaf entering Cornell and we will advocate for the assigning of interpreters who are culturally similar e.g. Black interpreters, upon request. It is very encouraging to see the changes that are occurring.

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.