Tag Archives: hard of hearing academics

Invitation to an online meet-up with The Mind Hears community

Poster with The Mind Hears logo and a cup of coffee, inviting all to a virtual open house on Friday, Oct. 7 at 12:-12:30 EDT. Times for alternative time zones are listed in the text below the figure. A link for registration is also provided with the poster and in the text below.

One of our goals with The Mind Hears blog is to build a community and reduce isolation for deaf and hard of hearing academics.

To provide an opportunity for our community to meet and interact, we are developing a series of “open house” drop in sessions on Zoom, where people can come along to network, chat, and share experiences. You can meet other deaf and hard of hearing academics including folks who have contributed to and been profiled by the Mind Hears.  Students are welcome!

Our first session will be Friday 7th October, and will run for 1.5 hours (see a list of times in different time zones below). Pour yourself a cup of tea or coffee, and stay for as little or long as you would like. Unfortunately, we can’t provide cake as this is a global event.

   18:00-19:30 CEST

   17:00-18:30 BST

   12:00-13:30 EDT

   09:00-10:30 PDT

To provide a safe space for the event, we are asking people to register in advance. Registration is free, and you will receive a link to access the event on registration. Please follow this link to register.

Captions will be enabled, and we will also have American Sign Language interpreters for the session.

Looking forwards to seeing you,

-Michele, Ana and Steph (the Mind Hears team)

The Mind Hears Mission Statement – Welcoming Chinese speakers

Translated by ~Jenny Kung, Heather Fair, and Minru Li

With help from Xiang Li, Anran Cheng, and Xiaoxu Ma

The goal for The Mind Hears is to 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. Jenny Kung, Heather Fair (see Heather’s recent profile), and Minru Li have generously reproduced The Mind Hears Mission Statement here in Simplified Chinese characters to help reach our Chinese-speaking friends, allies, and colleagues worldwide. We welcome help with translating our mission statement to other languages!

A cropped map of the world showing Europe, part of Africa, and Asia, with countries where Chinese is the primary spoken language shaded in dark green.
Image modified from original by Eddo under a CC BY-SA 3.0 license

宗旨宣言

该博客由处于各个职业阶段并有一定程度听力受损的学者撰写,供所有听力受损的学者使用。 我们使用‘聋人/HOH’ 来指代所有失聪或有听力障碍的人,不论其听力受损程度如何或采用何种首选交流方式(口头或手语)。本博客的目标是: 

  • 提供一个集思广益的平台,应对我们面对的挑战。
  • 分享听力受损人群在学术界的发展策略。
  • 创建聋人/HoH学者社群从而加强学术机构中沟通方式的包容性。

为什么用博客?

尽管经历可能各有不同,但作为聋人/HoH学者,我们总是身处为非听力受损人群所设计的环境中, 如何在专业上取得成功是我们面临的巨大挑战。由于各自背景以及所处的机构组织不同,我们可能拥有不同的争取资源和权益的能力以及解决问题的方法和策略。但是受到听力受损这种无形的残疾的限制,我们很难认识彼此,因而错过了相互学习的机会。通过这个博客,我们希望能够接触到世界各地的失聪及听障学者,从而减少孤立并建立一个资源和思想的共享平台。尽管听力受损程度不同且对各自生活的影响不一,通过这个博客,我们希望为所有浏览及参与讨论的人提供价值。

为什么关注学者?

作为学者,我们需要与听力正常的同事和学生开展各种持续沟通的交流的活动,比如:授课、出席研讨会、参加委员会会议和资助小组会议,主持和领导各种学术议,参与科普活动,并与媒体沟通。以上沟通场景是学术环境中特有的挑战,而作为学者,无论是听力正常人还是聋人/HoH,掌握以上场景中的沟通能力是获得成功的先决条件。社会及高校提供了针对听障患者的基础咨询和服务,然而该服务在大多数情况下无法满足我们聋人/HoH学者的专业需求。通过本博客,我们旨在创建一个聚焦聋人/HoH研究生学术群体的资源中心,从而帮助所有认定为聋人/HoH的学者实现其最大的专业潜能。

为什么“心灵能听见”?

我们博客的名字来源于雨果写给聋人教育学家贝尔蒂埃的一封信:

“心灵能听见时,即使耳朵听不见又如何呢?唯一的耳聋,真正的耳聋,治不好的耳聋,是心聋。”这个说法包涵了一个强有力的理念,在以听力为主的学术环境中,我们能否对学术研究和社会发展做出贡献,并非取决于是否能听见声音,而是是否能保持创新和坚韧。听力残障人士的沟通手段包括手语,唇读,助听器,字幕和人工耳蜗等,已经充分展示了人类聪明才智的无限潜能。雨果的说法与我们的信念不谋而合,那就是敞开心胸,对不同的解决办法采取开放态度,接受和听取不同的观念。无论是先天还是后天失去听觉能力的人,我们都已经在学术界工作中发展出了通向成功的道路。有时耳聋是件好事(列如:耳聋增益,Deaf Gain),但有时亦会带来很多负面拖累。此博客是一个表达观点和分享经验的家园。希望你们会发现这里是一个充满能量,资源丰富、思想开放、收获累累的聚会之地。

Harnessing social media to advocate for accommodations

-Paige Glotzer and Michele Cooke

While just the mention of ‘social media’ can elicit eye rolls from our senior colleagues, many of us deaf and hard of hearing (HoH) academics have found social media, such as Twitter, Instagram or Facebook, to be very helpful for connecting with others who share similar lived experiences. However, sharing our experiences with lack of access on social media can be a mixed bag. Occasionally, they receive no response or engagement. Sometimes, our stories evoke ‘that is terrible’ responses. Many folks feel powerless to offer effective solutions and they might either not respond or provide a ‘this is terrible’ response. This is understandable. Lack of communication access is a very challenging problem that often cannot be fixed easily because many of our conferences, lectures, meetings, etc. were designed by and for hearing people. Providing a ‘this is terrible’ response validates our frustration even if it doesn’t actually help to change the situation.

One amazing aspect of social media is that sometimes our message can reach folks who actually do have the power to change communication access. But will they make changes or not? 

Harnessing social media to advocate for accommodations text is on top of a keyboard that has images of different social media on various keys.

A few months back Michele was impressed with how effectively Paige was able to use social media to self-advocate for change. We decided to co-write this post to provide an example of how one hard of hearing academic inspired a conference (we will call it the ABC conference) to swiftly change their inaccessible approach after it was already underway. Like other deaf and HoH academics, we are both used advocating for our needs in professional settings. Paige has been outspoken about turning self-advocacy into policy in their home department at the University of Wisconsin-Madison. They had long admired Michele and Ana’s work on creating The Mind Hears platform and community for deaf and HoH academics. We hope that this example can serve as a model for how we all can be more effective with our self-advocacy. 

Paige took to social media after a frustrating morning when they joined a virtual panel as an audience member and realized that not only was there no captioning, but neither was there the usual Zoom feature to request it of the host.

Post #1An entire zoom conference I’m required to attend as part of a prize committee without even the option to request captioning in sessions?   LOL

The post got quite a few ‘this is terrible’ responses. Paige used those responses to explain the issue and educate commenters.

Post#1 follow up comment: They don't let you directly message a host in the chat so I'd have to publicly request captioning, revealing my disability to everyone in the session. Still awful but preferable to what seems like total ignorance and zero effort on considering accessibility.

The story could have ended there but Paige opted to advocate for change in two ways. First, they privately contacted the meeting organizers and then they shared a summary of the meeting on social media in a follow up post.

Post #2: This is the exchange I had with the moderator of the ABC in its virtual conference lobby. This is a major organization and a large international conference, being held entirely on Zoom. I'll be sending an email to the leadership later. I'm tired.
Paige: “Good morning. I am currently in a session where there is not even an option to request captioning. I am surprised by this. Is there something that can be done to ensure this basic accessibility feature in all sessions? The only time I've encountered this problem in the past is when the host of a Zoom session does not have an institutional Zoom account that supports live transcription.”
ABC representative: “Sorry to hear this. The meeting will be recorded. And we can add captions afterward if you need to re-watch your presentation. The ABC does not have an institutional account. Again, apologies for this.”
Paige: “This is very disappointing. It means I can't participate equally if I want to ask questions. I'm also on a time-sensitive prize committee so waiting for the captions to be added probably won't let me meet the requirements of my job today. This is a basic accessibility measure long standard at virtual conferences. I have long loved being a part of the ABC but today it has sent a message that disabled members such as me are not considered or valued, even as we do service for the organization.”
ABC representative: “Hello, I am currently looking into our options. And we will surely take this to the Trustees.”
Paige: “Thank you.”

A member of the ABC conference committee also saw the post on social media. 

ABC chairperson comment to post #2Hi all writing into this as ABC person centrally involved in planning this conference and also active in it for many years. We assumed that our zoom account would support captions. We have never done a conference like this before so we are learning. This was unexpected. My apologies this has happened but as our web coordinator said we'll look into this to try to figure this out.

A little later in the same thread

ABC chairperson follow up: You've been sent an email from the ABC president apologizing and explaining how this happened- and also that we think the problem has been fixed.
Paige: That sounds really fantastic. Thank you to you and everyone at the ABC who worked to resolve the issue. I'm looking forward to trying out the captions tomorrow.

The next day Paige logged in to find Zoom’s live transcription enabled for all conference panels. Paige posted a follow up to conclude the story and give credit to the organizers they knew were reading:

Post #3: After my exchange with the ABC and my post here, leadership reached out to me and worked with Zoom to enable captioning in sessions. The president of the ABC personally apologized and folks checked in with me today to make sure live transcription worked. I am happy that the organization responded rapidly and collectively to increase accessibility in the middle of the conference. Today's going much more smoothly. 
My hope is that people remember this when planning the next conference. Whether in person or virtual, access needs to be considered (and tested beforehand) just like any other standard feature of an event.

This story ends with the conference apologizing for the oversight and providing improved access. But not all of our self-advocacy stories end this way. Both of us have participated in inaccessible conferences. A group of AV staff once told Michele that no FM telecoil neck loops were available anywhere in the major US city of their conference. Paige has repeatedly been told that access features such as captioning recordings or providing access papers are too expensive and cumbersome to consider. We all have stories where we request better access and get nowhere.

What made advocating for change effective in this instance? What can we learn from Paige’s experience in order to make our own advocacy efforts more effective.

  1. They didn’t stop after the initial sharing on social media. Talking to the conference representatives takes valuable energy and time. Energy and time that you could be investing in the conference.  Paige recognized that they needed to prioritize investing time in contacting the conference representative and taking notes on that conversation. 
  2. In advocating for themselves, the Paige was very clear that their lack of access wasn’t just going to affect them but also the integrity of the prize committee.  Unfortunately, when organizations perceive that only a few deaf or hard of hearing people are impacted, they will not see the issue as important. Being able to frame your lack of access as impacting others provides more traction. While not all of us are part of prize committees we can say “A colleague has asked me for feedback directly after their presentation and I won’t be able without better access”. This kind of statement, which can always be true, points out how much everyone misses out when deaf/HoH are excluded. If applicable, one can also make the point that more accessible communication, such as captions, benefits more than just deaf and hard of hearing participants. Ideally, this numbers game should not be necessary. Unfortunately, we know we are self-advocating within ableist settings.
  3. When Paige shared the exchange with the conference representatives on social media, the conference was now being held accountable publicly for their response. This is a very savvy use of social media. Now it isn’t just the deaf/HoH academic who is waiting the conference representative to respond, but many hearing colleagues are also now invested in the outcome and will want to see the conference do the right thing.

The conference chairperson who read the social media posts was wonderful at accepting that they needed to make a change. Sometimes folks just get defensive and aren’t willing to change. We like to think that points 1-3 helped the conference chairperson be more receptive to change but sometimes this is out of our control.   


Paige Glotzer is Assistant Professor and John W. and Jeanne M. Rowe Chair in the History of American Politics, Institutions, and Political Economy in the University of Wisconsin-Madison Department of History. Their award-winning first book, How the Suburbs Were Segregated: Developers and the Business of Exclusionary Housing, 1890-1960 was published in 2020. Their work has been featured in both peer reviewed journals and popular outlets, including the Journal of Urban History, CityLab, and Time. They joined the University of Wisconsin after a postdoctoral fellowship at the Harvard University Joint Center for History and Economics.

Profile: Dr. Heather Fair

A smiling woman with short white hair, red earrings, and a green top. There is a Latin American tapestry in the background.
  • Current title: National Science Foundation (NSF) Postdoctoral Research Fellowship in Biology
  • Location: University of Minnesota
  • Field of expertise: stream ecology, microbial ecology of glacial-melt streams, glaciers and periglacial environments, and traditional ecological knowledge
  • Website: www.heatherfair.com

Introduction: Someone took a bite out of my cookie

I was born with a bilateral moderate-severe mid frequency sensorineural (MFSN) hearing loss.  This type of hearing comprises 0.7-1.0% of sensorineural hearing losses in which high-frequency (descending) and pancochlear (flat) hearing losses dominate.  MFSN is described as the u-shaped audiogram or cookie bite hearing loss because sounds in the mid frequency, or spoken range are affected, with an audiogram that looks like a bite has been taken out of a cookie (Figure 1).  Cookie-bite losses are virtually all genetically acquired, whereas aging and noise exposure are the most frequent causes of high frequency hearing loss.  This link is an auditory example of what it is like to hear with a cookie bite hearing loss.

An audiogram of an individual with hearing loss in the mid-frequencies.

Figure 1.  A mid frequency sensorineural hearing loss audiogram.  The horizontal lines from 0-20 represent the decibels of sound that the average hearing person is capable of hearing.  The curved lines denote the decibels of sound in which an individual with cookie bite hearing loss can hear in the right (A) and left (X) ears.  This type of hearing loss occurs within the human spoken range with many sounds important for speech recognition masked by the hearing loss (e.g., p, h, g, ch, sh, f, k, s, a, r, o, and th).

As an ecologist, I think of people who are profoundly Deaf, those with a reverse slope hearing loss, a cookie bite loss, or deafness from a young age, as a rarity within the tremendously diverse field of ecology in which all individuals play an important role in the human ecosystem.   

Without hearing diversity, we are missing the tremendous collective power of different human experiences, ideas, and creative thought which is shaped by information that our ears and eyes take in and interpret throughout our lives.

Tell us about your background 

I was born and raised in a small Amish community in northeast Ohio where my Amish great grandparents were forced to leave the church due to their furniture business.  My grandpa (who spoke Pennsylvania Dutch), dad who was a mechanical engineer (who I suspect had a cookie-bite hearing loss), mom (educator who worked with people with disabilities), and brother owned and managed the store.  I lost my parents at an early age and the store has since become a brewery, which is pretty neat as I am a hop grower myself.   

At the time I was born, infant hearing tests were not standard, so I was not diagnosed with my congenital hearing loss until around the age of eight.  I was also diagnosed with severe near-sightedness at the same age.  When my family was at our farm one day, I asked, “what are all the people doing standing on the hill?”  What I thought were people were actually cows.  I was taken for my eye exam where the big E was a blob and I got my first bottle-thick bifocal glasses.   

As much as I hated my glasses, reading became enjoyable and I excelled at creative writing by using my imagination – because, hearing fatigue set in for me after the first few minutes of a class, and I was able to take a trip into my mind.  During these trips, I was terrified that the teacher would pull me back into the classroom by asking a question that I wouldn’t know how to answer, so I tried to remain as inconspicuous as possible.   

During my first hearing exam, I remember the doctor explaining hearing aids to mom but when technology limitations for cookie-bite losses and cost were discussed my mom’s expression guided the doctor’s response.  He waved his hands and declared, “don’t worry, she’ll figure it out!”  That’s the last time my deafness was discussed.  We have to remember that back in the 70s; the concept of accommodations did not exist.  Assuming an 8-year old would figure out what accommodations were and then apply them to her life was a monumental task.   

My most vivid recollection of kindergarten was at the final bell of the day, when the principle announced “it’s time to line up outside at the buses”.  I would put my head in my arms and cry in fear as this meant I had to figure out which bus was my bus number and read invisible lips when I was off track.  I was terrified that I would end up at the wrong end of the county instead of home!!  Could I have benefited from sitting in the front row in classes and obtaining notes from others?  Absolutely!  From cued speech?  Oh my, this would have been a game changer for a cookie-biter in a hearing world!  Learning ASL at a young age?  Absolutely!!!   

Looking back at my life up through mid-career when I finally got hearing aids, I’m amazed how I was able to stumble through life by reading lips, speech-guessing, expression reading, and avoiding burdening people by asking them to look at me and repeat.  What I ended up doing was to laugh or to nod my head with a “yah” when the overwhelming effort to figure out what was being said exhausted me.  Therefore, I suspect people had an impression of me as either scatter brained or very agreeable.  No one knew I had my deafness because I, myself, didn’t realize I had a credible issue because as the doctor said, I could “figure it out”. 

How did you get to where you are?

My road to becoming an environmental scientist was circuitous.  The wonderful advice instilled by my parents, “you can be whatever you want” is something I hold very close to my heart.  With my upbringing in a family business, business was the option I knew I could earn a living regardless of my passions, of which I had many. 

I spent summers in the nearby creeks and loved raising cows, guinea pigs, dogs, cats, parakeets, and a donkey, but I didn’t know that ecology/environmental science could be a career.  Besides playing first base in little league and punt-pass-and-kick with the boys, my first strong interest beyond writing was in playing and arranging music.  I played piano, trombone, trumpet, French horn, and e-flat alto, and later learned violin while I was getting an MBA.  No auditory words necessary with these pursuits. 
 

Whenever I had a passion to learn a new instrument, I headed to the little barn behind our house and practiced for hours.  Defiant!  No one was stopping me from switching from trombone to trumpet!   When I saw the Ohio State University Marching Band perform my sophomore year on a field trip, I decided this was the band I wanted to be in, so after high school I picked up an e-flat alto and painted 22.5-inch separated lines down the driveway to perfect the military-style high step.  Highly competitive, I made it into the band my freshman year and every successive year.  While around this creative group of musicians, I was amazed at how they could belt out crass jokes and sing lyrics to pop, rock, and looney tune hits!  How did they hear all those words?  I also was bestowed a nickname in the band that I won’t divulge, but I’m sure there is a direct correlation with my cookie bite hearing loss.   

I had considered a career in medicine but my first attempt at chemistry sitting more than 10 rows away and to the right side of the lectern with a heavily-accented Russian chemist lecturer in a 500+ student lecture hall, did not go well.  I decided I would rather work outside than in a hospital anyway, so I should find a career where I could travel.  So, I went the practical route and chose international business management and marketing with an almost-triple major in Chinese.  My ear guided my choices.  Plus, I had no concept of environmental science or ecology as a career.   

For my language requirement, I arrived at the packed 102 Spanish class and the only way to remain anonymous was to slink into the very last seat in the long line-up of desks.  I couldn’t understand a word the teacher said from that distance.  I thought, “wow, my Spanish sucks” and promptly dropped out.  That quarter I found out that the university had 1-on-1 Mandarin Chinese language courses.  I signed up for 3 credits, no pressure, self-paced.  The experience was phenomenal and I continued to take Chinese classes through the graduate level over the next two years.  I just had the feeling that China would become a super power in 20 years.  My fortune was that not many students were signing up for Chinese language classes at the time so there were only five to six students per class.  This was perfect – to sit around a small table so I could read faces and hear enough.   

Fast forward to my corporate career at Wal-Mart HQ in Bentonville, AR with fresh MBA in hand in the information systems and global procurement divisions as a business analyst and strategist.  I was able to use my Chinese and trained suppliers and associates on business analysis systems that we developed in Bentonville – all over Asia (China, Taiwan, Korea, Singapore, Hong Kong), Brazil, Hawaii, and Dubai.  My career was phenomenal and the trajectory was headed upwards, but I ended up having six different managers within seven years which didn’t allow enough time for advocacy-building and mentoring relationships to blossom.  I never mentioned my hearing, and at that point I still didn’t have hearing aids because the issue had been buried since I was eight.  I’m sure others noted something different about me….and they probably weren’t aware that I saw their subtle facial expressions when they thought I wasn’t looking.  But I was phenomenal at putting cross-disciplinary teams together and generating ideas to solve complex problems.  I worked with others to figure out innovative ways to weave systems and business processes together to cut down the lead time from product development to purchase order creation.  The rest was for the logistics team to handle, which they did spectacularly.   

I was in Hong Kong on an overseas assignment when 9/11 occurred.  At one point after returning stateside, I provided a flow chart that was shared by my IT managers with the US government that helped them to understand how Wal-Mart efficiently collaborated with suppliers by supplying data freely.   They had noticed that after 9/11 the stores closest to the trade towers were able to maintain adequate dog food supplies for rescue dogs, even when the rest of the country was at a stand still.   

The last six months before I took a leave of absence I was an initiating member of the China environmental team that examined climate change and product life cycle issues, and I developed a balanced scorecard for executives, put together a green bag luncheon series, and was active in several other environmental working groups.  At the same time, I was pigeon-holed into an accounting position (that was never on my career goals statement!).   

My career goal was to become an international executive but during a career development meeting a VP told me, “but women usually stay at home and raise the kids”.  I’m convinced that the time-lag it took me to hear what he was saying, which shocked me into silence upon realizing what he said, saved his pretty face.  Wow, how did I let someone get away with that comment!  I didn’t even have a husband or kids!  At the time, most expats were married males with at least a kid or four to put into private schools while overseas.  What a bargain they missed overlooking talented single females, but then, we didn’t look like leadership so we didn’t fit the profile.  

At that time I decided that if I was not traveling, and I loved the environmental issues so much, how would I become a VP of global environmental sustainability without a science background?   

I packed my bags and headed back to the university on a leave-of-absence, and my first NSF fellowship a year later sealed the deal.  I was able to cut the umbilical cord from the corporate world and I’m forever grateful to the OSU Chinese Dept., my master’s advisor, and the National Science Foundation.  I am thrilled with that decision because when you are so deep into the interests of the billions for pennies, and under stress that makes you sick, you lose sight of what is really important in life.  I was appalled when I considered the pollution emitted from China factories directly into the atmosphere and aquatic environments, and flip flops and plastic beach balls that sold for a dollar but remained in the environment for thousands of years, all in the name of low prices for Americans.   

Enough was enough; I had to learn how natural ecosystems worked before anything.  You lose track of yourself, family, and the living environment when you are in the corporate rat race.  I was once termed a “butterfly” because I networked with corporate leadership and the hard-working busy bees to brainstorm solutions, but now this butterfly was ready to migrate.  I’m so glad I let my VALUES and magnetic compass guide my second career. 

While in graduate school I spent half of my time conducting stream ecology research in mountain regions and glacier-melt streams in a small Tibetan village in the Three Parallel Region of SE Tibet.  I acquired my first pair of hearing aids around the second year of my Ph.D.  I went to an audiologist because my roommate that summer mumbled constantly and it was driving me crazy.  When the audiologist, with his thundering New Zealand accent asked me “now how are you going to become a CEO with those ears”? I realized I really needed help.  With my hearing aids, music suddenly had a third dimension, and I heard rain drops, keys, footsteps, book pages fluttering, key board tapping, and many other sounds for the first time.   

My hearing aids helped tremendously, but they are not like putting on a pair of glasses.  It takes time to retrain your mind, and it will never be as good and immediate as a pair of glasses but they can be a game changer if you give your mind time to comprehend and adjust to what you are hearing.  I completed my Ph.D. in 2017 and am currently an NSF postdoctoral fellow in biology conducting supraglacial microbial ecology research. I was a Knauss Fellow at US Geological Survey, taught at Middlebury School of the Environment in China, Kenyon College, and Ohio Wesleyan University, and have mentored many students.

What advice would you give your former self? 

This is actually a reminder to my current self to advocate for policy change and insurance coverage for hearing aids (in particular for congenital and disease-caused deafness).  Why does a graduate student/terrified teaching assistant need to pay ½ of her low-income stipend for six consecutive months to cover a tool she needs to be able to perform her job (e.g., hear student questions, gain confidence in the classroom, pick up ancillary information, network with other graduate students, hear lectures)?  For those who have a hearing anomaly that requires the most up-to-date technology, we should consider providing new hearing aids at least every 5 years, and more frequently if there is a radical technology breakthrough.  After 10 years of daily use and tender care, my first pair wasn’t doing a thing.  I didn’t realize this until I got a new pair.  This should be considered for the future health and competitiveness of our nation.  Additionally, training for all Americans to understand the issues faced by those who are profoundly Deaf and those who live with deafness would help in creating an inclusive and understanding country.  

Any funny stories you want to share?

Before hearing aids, I constantly performed mental gymnastics to figure out what everyone was saying because what they were voicing seemed nonsensical.  If I could remember everything my mind first “heard” I could be a stand-up comedian.   Even with hearing aids, misunderstanding words is a frequent occurrence because hearing aids can never solve the ear-brain connection, although they can greatly reduce the time lag to solve the puzzle.    

When I was heading to the gym one day, listening to NPR in the car, Ann Fisher was talking about eating bacon as a huge problem affecting young people, and I wrestled with this for a couple of minutes trying to figure out why young people eating bacon was currently such an issue.  First, young people don’t typically get atherosclerosis, and since when did bacon become such a hot food item? Then it suddenly came to me — she was talking about vaping!  Aha, now that made sense.   

The irony about all this is that as everyone’s hearing is on the decline with age, mine will probably be the best at age 90 because with every few years, the technology to support cookie bite hearing losses becomes better.  I heard new sounds with my second pair of hearing aids, and practically ran for cover as I heard “Pterosaur screeches” before my mind converted them into black bird caws.  Imagine what I might be hearing at age 90. 

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!

Dear Students: Listen Up. Like, for Real. 


Feminine hands top on a laptop. The typer wears an off-white sweater. Photo by Kaitlyn Baker on Unsplash.

A love letter from your HoH Professor

Hi folks. I can’t wait to learn with you this semester. But first, an admission before we can get started. And I call this an admission because it feels like I’ve done something wrong, that I’ve made a mistake to which I must confess. Apologize? Confess? Perhaps it is both.

I am deaf. 

But I have done nothing wrong. (I must remind myself of this.) 

Well, almost deaf. I use the word “deaf” to placate the hearing; when I use the phrase “hard of hearing” with hearing folks it is too often misinterpreted as an invitation to a needling Q&A session. The word “deaf” is just a more concrete, absolute word for the uninitiated to accept. So “deaf” it is. But I’m not deaf—I can hear, barely. 

Surprised? I thought so. I am, too. 

When I was your age, I sat in the back row of the classroom, mostly silent, in denial and driven by fear. 

Look at me now: loud, confident, witty, encouraging in our classroom each day. Standing at ease, fielding questions, strolling the classroom as you ponder, think, write. Crushing your stereotypes and assumptions about what it means and looks like to be disabled—beautiful, smart, funny. And yes, I know I’m the one person in your life besides your grandpa that wears hearing aids. 

Your curiosity about my deafness is endearing but exposes the limitations of your experience. The first and (usually only) question: How did it happen? Why are you deaf? 

Wouldn’t I love to know. Like there was a playground mishap and now a little scar on my eardrum that blocks some sound from going in and out. No, children. No, there is no exotic origin; no riveting nor heartwarming story. Deaf for me just is. Has been. Will always be.

Back to the classroom. I’ll let you in on the best-kept secret of my trade because we need to talk about this if our time together is going to matter. 

Great teaching starts with trusting students. Think back: I bet the best teachers that you’ve had, at times, let go of their control in the classroom. They understood that classrooms are a space for collaborative invention. They didn’t talk at you, they learned with you, even abandoning a mediocre lesson if it meant the reward—your engagement and investment—was worth the risk of class failing extravagantly as it unfolded. Great teachers trust their students to contribute to the classroom as knowledgeable, interested peers. And again and again, I’ve seen students rise to this challenge they’re given and thrive.  

But I think that trusting students looks a little different for teachers with disabilities, like me. 

No matter how student-centered or democratic a classroom dynamic is, professors always have power over students. But what if it’s the other way around? What if a disability puts the professor at the mercy of her class?  What if I’m at your mercy?

Is there anything as vulnerable as a deaf person standing in front of an expectant audience? One that is looking to be led, to be given something (knowledge—something so abstract, fragile, personal)? Sometimes my colleagues tell me about their teaching nightmares: showing up naked to class; going to the wrong classroom; being forced to teach a class on which they know nothing about; showing up to take a test for which they haven’t studied. This is anxiety working itself out. The anxiety of a HoH professor is palpably different from this. We can prepare and utilize the latest microphones and other accommodations, but it always happens. Being exposed, I mean.  

It happens often. A student raises their hand and offers a question. I’m excited: questions mean students are listening and engaging. It also means I’ve created a classroom in which they feel comfortable and vulnerable. They trust me. But instead of a question, I hear muffled patches about analysis and … argument, … I think. 

Crap. Time to sweat. There’s a host of solutions and I need to flip through them all to 1) keep the cadence going and 2) assure the student doesn’t feel awkward. Do I:

  • Ask the student to repeat themselves? Power imbalance makes that tricky.
  • Ask a student closer to me to “translate”–basically re-stating what the first student said? There’s no guarantee I’ll understand the translator; there’s additional burden on folks in the front rows that they didn’t ask for. 
  • Play pretend: “That’s a great question. How about I offer it to the class first to see what your classmates have to say?” Or defer and delay: “That’s a great question. How about we chat after class about that?” But what if they asked a simple yes/no question? Awkward.
  • And, recently, ask the student to briefly pull down their mask so I can read their lips while they talk? (Side note: the painful, masked-up hell of this pandemic is worthy of another letter.)

Over the years, attentive friends and family members have learned to know and even expect “the look;” the exact facial expression I make when I have no clue what someone is saying. I merely had to turn to them, and they’d repeat (this is also the second option, above). This degree of trust took years to build. 

As the room sits silently waiting for my answer, I’ve got “the look” on my face, but not a single student understands. Our classroom was spirited, brisk, and it’s now still and all eyes on me. 

Which option is safe? On whom do I call? Who can I trust? The nightmare plays out yet again.

You registered for my class, but you didn’t sign up to accommodate and well, here I am, broken and all. So here I sit, writing this letter, warning you about the role you’re about to take on whether you like it or not: my teacher. 

Yours, 

Professor Heaser


white woman with dark shoulder length hair

Sara Heaser is a Lecturer of English at the University of Wisconsin La Crosse, where she specializes in basic/co-requisite and first-year writing curriculum, pedagogy, and program development. Her writing about teaching has been featured on the Bedford Bits blog, the Journal of the Scholarship of Teaching and Learning, and Composition Studies. Her favorite aspects of her job are mentoring undergraduate education students and new teachers, tutoring adult learners, and teaching first-year, first-semester writing students. She is an alum of the Dartmouth Summer Seminar for Studies in Composition Research and Winona State University.

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.

Lessons from the pandemic: work innovations that we are keeping

An open laptop shows  gallery view of a zoom meeting, with faces of about 20 people -- each in their own zoom box" -- slightly out of focus. A blue-green ceramic mug is next to the computer. Both are on top of a slightly distressed looking wooden table.
Photo by Chris Montgomery on Unsplash

The last year required a myriad of adjustments in our professional lives. For those of us in academia, much of it entailed moving our teaching and service to remote format. The pandemic isn’t over, but many universities around the world have taken steps to return to face-to-face operations. When the current semester started, we, Ana and Michele, shared notes on what aspects of remote teaching and remote working went well for us, and which we hoped to keep no matter what mode our future work takes (e..g  in-person, hybrid mode, or remote; masked or unmasked). Because we experienced many of the same struggles and benefits, we haven’t attributed our experiences and discoveries to a particular person.

Teaching

Switching to remote work mode in 2020 and 2021 forced us to shake up our teaching, making us re-examine our class content and many of our class practices (see our post on accommodating a pandemic). This push towards innovation left us with several practices that we wanted to bring back with us from the pandemic — some because they are helpful with our deafness, but others simply because they seem to improve the pedagogy of our courses.

  • Zoom office hours can be more accessible and more inclusive than in-person office hours. Though in-person conversation always provides greater connection, students appreciate being able to drop in with a question from wherever they are, instead of making the trek across campus to our offices. This ease of access meant they are more liable to come even if all they have is a small question. Also, if we are zooming from private spaces we don’t have to wear masks, which allows speech reading (see our post on navigating masked world) – with this and auto-captions enabled we are able to follow conversations often better than we could in person. 
  • Going online forced us to explore and use the tools available in our class management software, which we had resisted exploring fully before, primarily due to inertia. We found that we could offer better feedback and grade more equitably assignments submitted online. For example, messy handwriting is less of an issue with online assignments. We could also come up with more creative ways for students to engage with the class content and work together (e.g. challenges that involved students taking pictures of themselves with class-related content; collaborative jamboard tasks). Previously, we had over-relied on the standard think-pair-share and we found that jamboards opened new ways of having students work together. We could even set up a break-out room for folks who prefer to work on their own, rather than having them feel obligated to work with their chatty neighbor. For seminar style courses, one of us started using Perusall for reading assignments where students post questions and can comment on the questions of others. Having those discussions beforehand meant that students came to the seminar ready to engage with the material more deeply. We have continued to make use of several of the class management tools we discovered while in-person this semester. 
  • Inertia had also prevented us from previously trying a flipped classroom approach. But in order to provide both synchronous and asynchronous learning opportunities for students while fully remote, we were essentially “forced” to flip our classroom for the first time. We discovered that we really liked it! Students seemed much more engaged/aware when they came to class having previously watched one of our videos on the topic being covered that day. We had assigned readings in the past, but it seemed like most students never read the assignments. The combination of pre-recorded videos with a required follow-up quiz led to much better questions in class and also less of a rush to try to fit a given topic within a class period, and we have continued using a flipped approach for our in-person classes this semester.
  • Because engaging remote students to participate was more challenging than being in-person, we started using anonymous polling. Anonymous polling tools, such as the Zoom poll, Mentimeter and Poll Everywhere, provide a powerful way to engage students. During remote teaching, we found that these anonymous polls allowed students who might have otherwise been uncomfortable to raise their hand to express their opinions. We have now tried to use some of these tools for all courses, whether in-person, hybrid or remote.
  • Several platforms allow written questions during live lectures. You provide a URL to the audience and they can then access a Q&A forum from their smartphones or laptops. For deaf/HoH instructors, this provides a way to understand student questions in large courses. Even before indoor mask requirements, we would struggle to understand questions or comments from folks beyond the first row (see our post about teaching large classes). One of us has experimented with receiving questions this way using Google Audience Tools in her large (~230 students) in-person lecture class this semester; in fact, this has been the strategy that has made it possible for her to interact with masked students at all . Allowing anonymous questions to be submitted has yielded more student questions, while reducing communication barriers for us as deaf/HoH instructors. It would be great to see more live presentations take advantage of this functionality and discover ways to incorporate audience/student responses to each other too.

Meetings

All of the benefits and drawbacks of remote teaching also apply for remote meetings. It can be difficult for deaf/HoH folks to follow in-person meeting discussions, and when we are leading meetings we often miss what folks contribute, which can erode the flow of meeting discussions, as it does the classroom discussions.

Faculty meetings 

Faculty meetings are notoriously deaf/HoH unfriendly (see our post about faculty meetings) and during the period of remote work, we were able to participate more fully. The ability to see colleagues’ faces while talking and combination of auto-captions and generated transcript (once our institution actually purchased the zoom auto-captions option) did make it easier to follow the entirety of zoom meetings. We have fortunately continued to have remote faculty meetings this semester. One of us has had one masked in-person faculty event; at this in-person event she felt herself drift into the background, as in pre-pandemic times when speaking would reveal we had missed part of the conversation.

We have mixed feelings about advocating to never have in-person faculty meetings again. The chit-chat before and after meetings improves department cohesion. The shared laughter or groans in response to lighter moments or bad news helps camaraderie. At the same time, we recall so many times when we heard folks laugh and wondered what joke we had missed. We feel that we participate more equitably in zoom meetings than for in-person faculty meetings. Going forward, in-person meetings could be alternated with remote meetings in order to harness the benefits of both meeting modes.

Committee meetings 

Pre-pandemic, committee meetings often involved scrambling to get across campus in time for the start of the meeting. Being able to participate from our offices or homes remotely, meant not only that the meeting was easier to follow (see comments above), but we also avoided missing the first few minutes in the hustle across campus. We’ve also been participating in a greater number of professional committees with folks at other universities and even from other countries. In the before-times, such committees might have met in person during one or more of the disciplinary conferences. Now that we can meet more regularly over zoom, we find this committee work to be more effective and rewarding. Maybe this is also because we can participate more fully in the remote mode than we could in person, where we were already exhausted from listening at the disciplinary conference. We have even found that the auto-captions can help us to some degree in understanding people with unfamiliar accents (see our post about unfamiliar accents).

Research collaboration meetings 

Being able to share screen and annotate on the screen allows for some research discussions to follow more smoothly than in-person. Sometimes, when a group is huddled around one computer, they can’t see the screen and they end up pointing vaguely to try and describe something. The annotate tool makes it clear what folks are pointing to and still allows everyone to add to the conversation. However, one drawback of remote research meetings is that drawing with a computer mouse is horrible clunky compared to a pen on paper or whiteboard. Another benefit of remote research meetings is that our research collaborations with folks at other institutions has strengthened, as we have regular remote meetings to discuss on-going and potential projects. With captions available for remote meetings and video for speech reading, we are able to participate fully in ways that teleconference research calls did not allow pre-pandemic. The same is also true for journal club type seminars that discuss a research paper.

Invited Speaker Seminars

With the return to face to face instruction some of our seminar presentations from visiting scholars have been in-person and some hybrid or remote format. We have found that remote seminars continue to be of overall benefit, allowing us to invite distant speakers, leading to greater geographic representation. In-person seminars with and without masks have always been challenging for deaf/HoH folks. Allowing for hybrid seminars with auto-captions increases accessibility for deaf/HoH academics, but seminar hosts and/or speakers have to be cognizant about repeating audience questions to make these available to those online. What about when we have been invited to give seminars elsewhere? Given the current reality of masking indoors and the challenges this poses for our ability to speech-read our hosts and audiences, to date we have only accepted remote speaking invitations.

Academics, by nature, tend to resist changing the way we work. Our research and scholarship builds on the previous work within our disciplines. We don’t reinvent our disciplines with each new study. Experiments only change one parameter at a time in order to learn how systems work. Unless there are external factors, our tendency is to work the way that we have in the past. Data can point to better practices that slowly shift how we work over time and with slow incremental changes. While our survivorship bias leads us to make only small changes to what has worked in the past, what worked in the past for meetings and teaching was not inclusive to everyone. The covid-19 pandemic forced an overhaul of how we work. Within weeks, we adopted new approaches that otherwise might have taken us years to try. The pandemic crisis also provides a phenomenal opportunity to assess the way that we work and make wholesale changes that improve inclusion and access. 

Rather than returning to the old normal, we advocate for moving forward to the new normal. This new inclusive normal uses effective practises from in person and remote teaching and meetings. We would love to hear from others on “best practices” that they have brought back with them from their pandemic experiences.

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