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. 

Science in ASL is a whole different language: Interpreters in STEM

— Megan Majocha

Deaf and hard of hearing scientists often face a lack of communication access, which is troubling because they have made significant contributions to STEM (Science, Technology, Engineering, and Mathematics) fields over the decades and diversify the STEM workforce. Therefore, sign language interpreters trained in science are critical to making STEM inclusive for deaf scientists. During my PhD journey in the past few years, I have slowly expanded my network of scientifically trained interpreters. Having worked with me for about three years, my scientific interpreters know my research and what I do. Having the same interpreters with me throughout my PhD is extremely important because it creates a communication barrier if the interpreter is not skilled in STEM vocabulary. Very often, science signs do not exist because STEM in American Sign Language is a specialized language, as are other signed languages. Although there are a few resources where deaf scientists meet and discuss signs for specific science words, the signs are not standardized yet and need to be developed (see Atomic Hands listing of different ASL STEM dictionaries). Furthermore, I had trouble finding scientific interpreters when starting my PhD, either because they were working with other deaf scientists already, or they weren’t available full-time. Consistency was essential for me, because interpreters will be able to pick up science-related language and signs as we go. My class and on-call interpreters should be consistent throughout the semester, so I require two interpreters full-time. In my experience, not all interpreters know science when they first start working with me, but their enthusiasm and commitment to learning the science make them good STEM interpreters.

drawings of finger alphabet for S T E M overlain on an blue washed image of DNA

It is one thing to translate from English into ASL, but translating from ASL into English is also challenging. People do not realize that I cannot practice my presentations alone. In order to prepare well, I have to practice with my interpreters ahead of time. Interpreters who don’t understand what is being discussed in meetings may cause major misunderstandings. For instance, some signs seem similar but have different meanings. Here are examples of such misunderstandings from my own experiences: 

  1. “Stain” and “dye” – When I said, “I stained my cells with crystal violet to perform cellular proliferation assays,” the interpreter would say, “I dyed my cells” instead of “I stained my cells.” In histology, it is important to note the difference between both words. A stain is a blend of dyes used to give contrast to different parts of the tissue used on a microscopic slide, while a dye is a reagent that colors specific molecules of tissue samples. 
  2. “Metastasize,” “spread,” and “disseminate” – When I said, “tumor cells metastasize to the lung,” the interpreter would say, “tumor cells spread to the lung,” which is the right concept, but “spread” isn’t the word I wanted to use.

I need to be very specific about which words I use. Such specificity is important in science, as it ensures that all scientists are assigning the same meaning to keywords. Having consistent interpreters assigned to us is essential so they become fluent in ASL of our discipline. Another consideration is that I need STEM interpreters voicing for me at all presentations and lab meetings, including one-on-one meetings. For these meetings, I provide some background information and a summary before each session to be extra prepared.Additionally, some science words sound similar to “everyday” terms that non-STEM interpreters might overlook. There was a time when I had a sub interpreter during a lab meeting in which mammary glands were being discussed. The interpreter said “memory” instead of “mammary.” At the time, I thought we were discussing memory cells in the immune system and could not adequately follow the lab meeting! 

Since starting my PhD, I have expanded my team of scientific interpreters to reflect the demands of my job. In addition to giving presentations at conferences, presenting data during lab meetings, and participating in networking events, an important part of science is chatting with colleagues about our work. Scientific interpreters facilitate all communication between my colleagues and me. Having qualified scientific interpreters for my classes and lab work has allowed me to focus on my career, instead of constantly worrying about communication.

Even so, I still face a barrier whenever I need to travel outside the region for a conference. To attend a recent conference, I asked the agency to send my preferred scientific interpreters, who have already voiced my prior presentations and are well acquainted with my work, to accompany me. I was informed that the agency was unable to send my preferred interpreters, but they could find me interpreters in the conference area. “How can I prepare for my poster presentation and attend networking events with interpreters who know nothing about my research?” Attending scientific conferences is a critical part of my scientific training, and I need scientifically trained interpreters to have the same access as the rest of the conference attendees. I will not be able to participate in this event if I am working with interpreters who do not have experience or do not have the expertise to translate the specialized language used in our lab. As a result of my mentor’s advocacy and my own advocacy, I was finally able to bring my STEM-trained interpreters with me to the conference.

It is important for deaf scientists to be able to focus on their research rather than using up energy trying to get access. A deaf scientist’s advocacy is crucial, as is their mentor’s advocacy. Our advocacy and clarity about the accommodations deaf scientists need will help ensure their success. We cannot assume everyone knows how to accommodate us, let alone know which interpreters are the best fit for us, but by persisting in efforts to have our needs met, we can normalize the respect that our accommodation requests deserve. 


A light-skinned woman with dark pulled back hair smiles to the camera while working at a lab bench. She wears calves and is handing vials under a fume hood.

Megan Majocha is a Tumor Biology PhD candidate at the National Institutes of Health/Georgetown University. Her research interests include breast cancer metastasis, cancer genomics, and epigenetics. As part of her thesis research, she investigates the role of metastasis susceptibility genes in breast cancer metastasis and the mechanisms that lead to them. Throughout her career as a deaf scientist, she has been interested in science communication to provide access to science to everyone. 

Writing reference letters for disabled mentees

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

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

— Michele


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

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

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

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

Guidelines for Having the Conversation

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

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

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

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

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

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

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

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

Guidelines for Writing Your Letter

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

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

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

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

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

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

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

-translated by Ana

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

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

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

Misión

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

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

¿Por qué un blog?

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

¿Por qué académicos?

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

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

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

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

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

Profile: Dr. Anna Danielsson

Professor of Science Education, Stockholm University

Twitter: @annatdanielsson 

Link to website

Foto. Mikael Wallerstedt


Tell us about your background

When I was about four years old my parents noticed that I wasn’t able to hear crickets, but the pediatrician couldn’t find anything wrong with my hearing. Somehow, I also passed the school hearing tests, so throughout my schooling I had no idea that I didn’t have normal hearing. With all likelihood, I’ve had at least some degree of hearing loss since childhood. I’ve always had tinnitus and has always been the last person to notice my mobile phone ringing. Still, having no high frequency hearing was normal to me and I had no idea what I was missing. It wasn’t until in my thirties I realised that you were supposed to hear the lyrics of music. Since my hearing loss was diagnosed ten years ago my ski-slope has migrated to the left in the audiogram, my low frequency hearing is still within the normal range, but it then drops of very quickly. Practically, this means that I’m mostly OK with understanding speech if listening conditions are good, but that my speech understanding deteriorates quickly with background noise, distance, or bad acoustics. 

I grew up in a small village in the middle of Sweden, about five miles from the nearest town, Falun, and about three hours north-west of Stockholm. The community I grew up in was very much a working-class community – my mum worked as a nurses’ aid and my dad at the local papermill. My dad had left school at thirteen, but mum had graduated from the upper secondary school science programme. Like her, I identified with being good at maths. I enjoyed school, had good grades, and my parents supported me. Throughout compulsory school I was in rather boisterous classes and in retrospect I can guess that my hearing loss probably helped me focus, making it easier for me to disregard all the noise in the classrooms. I was fortunate to have very good science and maths teachers in lower secondary school. In upper secondary school, the science programme seemed like the obvious choice. Despite coming from a non-academic background, going to university also was something I more or less took for granted as being in my future – something also made possible by higher education being free in Sweden and the student loan system generous. What I was going to study was a more difficult choice – throughout school I had always had broad interests across the sciences and the humanities, in particular. In the end I opted for physics.

How did you get to where you are?

I did my undergraduate degree in physics at Uppsala University. After much deliberation, I decided to study a subject that I had found interesting in upper secondary school and that also presented very much of a challenge. I liked the idea of physics being perceived as a difficult subject and didn’t mind it being a very much male dominated discipline, quite the opposite, in fact. This also contributed to the sense of doing something unusual. However, as the studies progressed, I still found physics interesting, but I had a hard time imagining myself working as an experimental physicist, the path that I was on. I also studied history as an undergraduate student, eventually earning a Bachelors degree, but didn’t really see much of a future in that discipline. Towards the end of the physics studies, I took a course in physics education research and that’s where I found a discipline where I finally could combine my interest in physics, with a broader interest in the humanities and social sciences. I then got the opportunity to do a PhD in physics specializing in physics education research at the same department as I had done my undergraduate physics studies. I had found an academic discipline where I felt I belonged. My PhD thesis is entitled “Doing Physics – Doing Gender” and is concerned with university physics students’ identity constitution in the context of laboratory work. 

After the PhD, I did a two-year postdoc at University of Cambridge. As you would expect, my English improved during these years, but I struggled more and more to hear what people were saying. I did interviews with student teachers as part of my postdoctoral project and my transcribed interviews  were full of gaps, because I just couldn’t make out what was said. Towards the end of the postdoc, I googled “high frequency hearing loss” and what I found was very much in line with my experiences. When I got back to Sweden after the postdoc I went to see an audiologist and the hearing test showed that I had ski-slope type of hearing loss, with no hearing in the high frequencies. I got bilateral hearing aids straight away. 

After the two-year postdoc at Cambridge, I returned to Uppsala University, but this time to the Department of Education, as senior lecturer in curriculum studies. In 2018, at age 39, I was promoted to full professor at the same department. Since last year, I’m chair of science education at Stockholm University and lead the science education section, with about twenty-five senior researcher, lecturers, and PhD students. The more I’ve risen through the academic ranks, the easier I’ve found it to get accommodations for my hearing. Part of this is due to often being more in control of situations (I often chair meetings, for example, and can then apply a strict talking order), but it’s also about being listened to when you talk from a position of power. 

What is a professional challenge you have faced related to your deafness?

In 2016 I was recruited to King’s College London, as Reader in Science Education. This really was an incredible opportunity, in a highly inspiring research environment. But, for the first time, my hearing loss presented a very substantial obstacle. The acoustics were terrible, sound kept leaking in from the busy road outside, and I was working in my second language. While I’m more or less bilingual in Swedish and English, I’m much more sensitive to bad listening conditions in English. This experience is common for most second language speakers. Hence, I was struggling in meetings and while teaching, and was exhausted all the time. At the same time, I enjoyed the work and really liked living in London. But, in the end I decided that it just wasn’t worth it, after a year I left the position and went back to Uppsala University.

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

I have a microphone system with three Roger table mics and a Roger pen, connected to my hearing aids, that I use for teaching and in meetings. I also connect one of the table mics to my laptop to be able to stream sound directly to my hearing aids, for example, in Zoom meetings. Swedish universities and public placed are often equipped with hearing loops.

Any funny stories you want to share?

As a graduate student I was teaching an evening class about “Everyday physics” and one of the topics was sound and hearing. As part of the topic, I wanted to demonstrate the human range of hearing using a tone generator. I tried the tone generator out in the lab, but just shy of 4000 Hz I couldn’t hear anything, no matter how much I turned up the volume. Thinking that there was something wrong with the tone generator, I went to get another one. Same thing. I then went to get a colleague and he could hear the sound almost up to 20 000 Hz, just like you’re supposed to as a young adult. In the lecture hall I asked the student to raise their hands and then take them down when they could no longer hear the sound, as I raised the frequency. In the mixed group of students, some twice my age (I was in my mid-twenties), no one took down their hand before about 15 000 Hz. You would think that I would have realised that something was wrong with my hearing there and then, in that lecture hall. I didn’t. Having no high-frequency hearing was normal to me. 

The Eight Faces – a deaf artist’s perspective on masks

Two rows of 4 faces each on a different brightly colored background. The features of each of face are obscured by jags and multiple shapes of contrasting bright colors.
The Eight Faces by Ryan Seslow

At this moment, after 2 years of pandemic living, many COVID restrictions are being rolled back in the communities where we – Michele and Ana – are located. We see similar steps being taken across the U.S. and in other parts of the world. Whether these rollbacks represent a return to normality, or just a lull before the next variant strikes, only time will tell. The current result, for us, is a patchwork of requirements – our local grocery store no longer has a mask mandate, but at the time of writing, the classes we are teaching still require that everybody be masked.

This inflection point in our local pandemic experience provides a time to pause and reflect how the widespread adoption of masks has shaped our lives as deaf/heard of hearing (HoH) academics in the last two years. It is possible to simultaneously hold two opinions of masks. We are grateful that a low-tech solution like mask-wearing has allowed us to be out and about in public and to teach our classes while keeping ourselves and others safe these past years; we are grateful to be in communities where mask mandates were embraced as part of a collective action we could undertake for public health. At the same time, we have despaired about the barriers that masks have imposed on our ability to communicate and connect with others (see Ana’s post on Navigating a Masked World), and the consequential isolation; we have mourned the limits on our engagement with our students when every verbal interaction is such a struggle for comprehension.  We also have tried alternatives, such as clear masks, and have found them to not be a solution– they fog up, become uncomfortable and do not protect as well as other masks. Communication is still a struggle with clear masks in the classroom and elsewhere.

In today’s post, we want to highlight the art of Ryan Seslow that so accurately captures the effect masks have had on our lives as deaf/HoH people. In his series of “The Eight Faces” (pictured above) we see our struggles portrayed much more effectively than we can do so in writing.  In Ryan’s own words (<280 words each due to limits of twitter postings):

“Important fact about this series – I’m Deaf & this series is an expression of how hard it has been to receive communication from a world of people wearing masks for the last 1.8 years. Of course the masks are necessary to protect us.”

“A masked face takes away all access to read facial expressions, the lips & the mouth to speech read & connect to rapport. The portraits are what distorted audio garble looks like as a visual example of strained hearing attempts over and over again.”

We also direct our readers to Ryan’s digital art series: Waking Accessibility Awareness, which so vividly capture his (and ours!) continuous challenge for access as a hard of hearing artist in the academic and art worlds.

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.