Category Archives: daily grind

Deaf Gain -> diverse and stronger research

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

-Michele

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

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

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

Here are three examples of deaf gain in my research approach

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

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

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

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

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

The more I missed, the more I made

RyanSeslow1

-Ryan

I am overcoming a lot of my fears by directly putting myself in positions where I have to talk about how hearing loss and being deaf has affected my life. As a college professor (yep, for 14.5 years now) my job requires me to be in front of a lot of people each and every day. I have been trying to be more direct with my students and colleagues, and tell them how I feel and what I need from them. My honesty about who I am and what I am missing makes getting to mutual feelings of compassion and empathy a little easier. This mutual empathy helps both parties make the emotional connection that I feel is necessary in education.

Often, I have to ask people to repeat themselves, or to speak more slowly, or loudly. I often incorrectly answer questions and everyone laughs or looks at me with a priceless look of confusion. These things also make me laugh as shared misunderstandings create connections and remind me to take myself lighter. That connection is where I begin to know someone, because they would now know me as I am. I need to be more honest and forward about why. It is my responsibility to make people aware of what and how much I am missing. It is natural to seek deeper meaning out of yourself and examine how that applies to the world around you. We grow through such self-discovery as we interpret ourselves in relationship to our time here on this planet. I have, however, learned the hard way that it can slip away all too fast if we hide from ourselves. Hiding only seems to perpetuate more hiding. I often wonder how many other people with severe hearing loss and deafness are out there hiding from their deafness as I used to do?

Dealing with this process of healing and facing my fears (it’s an ongoing process), I recently had an epiphany about my work as an artist. Possibly you are already familiar with my work, but if not, I have been a high-volume output kind of artist for my whole life. My style is to make many things At Once. Volume and production, productions in volumes and accumulation. What a great metaphor, and right under my nose! By connecting my hearing limitations to the question, “Why do I make so much stuff?” or “Why have I put the emphasis on physical output and high volume of works produced?” I suddenly get it. My work habits are all about filling in the fear of how much I have been missing and have missed in this world.

Overcompensation.

I missed a lot beginning in early childhood; and as I grew older, the more I was not hearing the more art I would make. Production and Volume = Missing. The funny part is, most of the art that I make and have made is not dark or representative of my frustration. I do not try to communicate unhappiness, but I do see a huge common thread of a lack of meaning in my work before I became more aware of the impact of my deafness. Subsequently, the context of my art has changed and this plays a huge role in the kind of work that I greatly need and want to produce. The best is really yet to come.

RyanSeslow2

The animations in this post continue to explore the soundless looping GIF format. These pieces begin as digital image fractures and manipulations. They are re-composed and organized as new imagery and content. How does that process play a role in communication? Missing 5-8 words in any sentence can have a profound effect on how one may respond, comprehend or take away from an interaction. What does this look like when that actual missing fragment(s) take place? Repetition is used to display the distortions and metaphors for how this experience may be interpreted visually. If you are a hearing person viewing these animations you may be “missing” the usual audio aspect to the videos you see, watch, and hear each day.

This post is slighted edited from the original on Ryan Seslow’s blog  where you can see more of his art.

What’s In a Name?

—Ana

What’s in a name? that which we call a rose
By any other name would smell as sweet.

― William ShakespeareRomeo and Juliet

Shakespeare’s quote is overused, but the temptation to use it for today’s blog topic was irresistible. I would like to tackle the topic of labels—specifically the question of what label we, individuals who have varying degrees of hearing loss, use to describe our deafness within our professional academic environment.

The World Health Organization (WHO) reports that around 466 million people worldwide have disabling hearing loss (this is a bit over 5% of the population).1They define “disabling hearing loss” as hearing loss greater than 40 decibels (dB) in the better-hearing ear in adults, and greater than 30 dB in the better-hearing ear in children. The Hearing Loss Association of America (HLAA), reports approximately 48 million people in the United State (almost 20% of the population) with some degree of hearing loss.2Because the HLAA estimate includes individuals with slight to severe levels of hearing difficulty (16-90 dB) as well as those with profound hearing loss (>90 dB), their percentage estimate for the U.S. is greater than the WHO’s worldwide percentage estimate. Nevertheless, the numbers help with an important point. Hearing loss is a widespread, worldwide condition; however, how different countries address issues concerning deaf/HoH individuals can vary widely. When it comes to labels, I can only speak to my experiences of living in Colombia and the U.S. I’d like to recount this limited experience and how it has shaped my views, but I really hope our international colleagues will chime in with information that can increase our awareness of how deaf/HoH labels are viewed or used worldwide.

In the U.S., the currently prevalent and most accepted terms seem to be deaf, Deaf, and hard of hearing (see, for example, recommendations from the National Association for the Deaf).3Capitalizing the ‘D’ in Deaf holds special meaning in encompassing a group of deaf people that share a language (ASL) and a culture, and advocacy by Deaf people has contributed enormously to a nuanced understanding of how those in the deaf/HoH communities identify themselves.

In Colombia, the word “sordo” (Spanish for deaf) is the only label I know for people with hearing loss. However, “sordo” often conjures the image of a person who communicates exclusively by signed language (note, however, that Colombia did not officially recognize Colombian sign language until 1997).4Moreover, a 1996 law created to define the rights of deaf people in Colombia defines “sordo” as a person who presents a hearing loss of more than 90 dB that impedes acquisition and utilization of spoken language in adequate form.4 As an individual who relies primarily on hearing aids for communication, I have often felt at a loss in Colombia for words to describe myself, since “sordo” seems to have such a narrow definition. As a country, Colombia has not undertaken a comprehensive discussion about the best language to use when characterizing people with disabilities, to the extent that I know of no widespread recognized term for myself. Thus, for me, the abundance of labels to choose from in the U.S., even if each comes with some historical baggage, has always felt like a relief.

Perhaps this partly explains why I often reach for a term to describe myself that has fallen out of favor among many: “hearing impaired.” My comfort with this term may also stem from my scientific background. It feels like a useful description that (most of the time) explains relatively accurately that I have difficulty hearing, but will communicate through oral means (with all its attendant problems). Calling myself hearing impaired seems to me equivalent to saying that I am very nearsighted (and thus the shape of my eye causes images to be focused in front of my retina), or that I have a skin discoloration caused by a vascular anomaly (i.e. a port-wine stain) on my left hand. I’m not bothered by the term’s focus on something about me being “wrong.” Maybe because I’m a biologist I feel very aware that my sensorineural hearing loss is due to damage to my tiny cochlear hair cells, so that they cannot accurately transmit sound vibrations to my auditory nerve for my brain to interpret. “Damaged cells” fits comfortably within my definition of impairment.

Do I worry that the label I use will be taken by others to define me? The thing is, I do feel that my hearing loss contributes to who I am. Being Colombian also contributes to who I am, as does being an evolutionary biologist, being nearsighted, and being an introvert (which is probably due to some aspect of brain chemistry somewhere). The color of my skin, the color of my hair, my physical dexterity (or lack thereof) all contribute to who I am. None of these traits explains everything about me, but I am fairly certain that they, and others I do not list, have all shaped the person I am today. I therefore find it hard to get riled up about being referred to as hearing impaired or a hard of hearing person.

So what label to use? My opinion is that is that your label should be the one that you prefer. A label should feel accurate, non stigmatizing, non belittling, and comfortable. But the flip side to that is that nobody, not even our fellow deaf/HoH academics, can possibly guess what we prefer. The onus is thus on each of us to introduce ourselves, and let our colleagues know how we identify. And the onus is also on each of us to be kind and patient when our colleagues use something other than our label of preference.

What do you think? Is there an optimal way to refer to all deaf/HoH people in our community? An optimal way to introduce ourselves to our academic colleagues and students?

To our academic colleagues outside the United States: we need to hear from you to help us achieve an expanded understanding of the deaf/HoH experience around the world. How do you most often refer to yourself to others? Are certain labels regarded negatively?

 

1http://www.who.int/news-room/fact-sheets/detail/deafness-and-hearing-loss

2https://www.healthyhearing.com/report/52814-Hearing-loss-statistics-at-a-glance

3https://www.nad.org/resources/american-sign-language/community-and-culture-frequently-asked-questions/

4Zambrano-Valdivieso, O; Almeida-Salinas, O; Suárez-Uribe, E; Restrepo-Pineda, J. (2017). La enseñanza de la lengua de señas colombiana como estrategia pedagógica para la inclusión educative—Estudio de caso. Revista Inclusión & Desarrollo, 5 (1), 37-48.

Why the world needs another blog

— Ana and Michele

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

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

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

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

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

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

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