Category Archives: advocacy

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.

Sketch of an alert rattlesnake with forked tongue and active rattle. The text says Passing the Rattlesnake Test

Passing the rattlesnake test

-Michele

I can pass as hearing. With good lighting, low background noise, and a good night’s sleep I can follow and participate in small group conversations like any hearing person. Like nearly all deaf/hard of hearing (HoH), my ability to listen, speechread, and follow conversations decreases quickly with less light, accrued listening fatigue of the day (see post on How much listening is too much?), more background noise, additional people with quick back-and-forth banter, or unfamiliar accents (see post on Understanding unfamiliar accents). I’m also pretty good at bluffing. 

<garbled speech>
… nod and smile
<garbled speech>
Ho! The group is laughing now. Laugh a little  but not too much
<garbled speech>
nod and smile …

I don’t sound as deaf as I am because of years of speech therapy to teach me how to pronounce sounds that I can’t hear. The message speech therapy delivers is that the deaf/HoH folks should work hard to sound as hearing as possible. The burden is on the disabled person to assimilate rather than for hearing folks to tolerate deaf accents (see post on Eloquence is Overrated). Until I met other deaf/HoH folks in graduate school, I bought into that myth. I worried a lot about how I spoke, and my own internalized ableism fueled the myth that if I just worked hard enough nobody would know about my deafness. I could overcome my disability. My view on speech has changed over the years and I now find deaf accents wonderful/familiar/comforting. Though I will admit to still having some worries about my speech when I give high-stakes presentations —that internalized ableism is a tough beast to tame.

So, the combination of my slight deaf accent, excellent bluffing skills, and the privilege of being able to follow well-lit conversations with low background noise may be why people sometimes seem to either doubt my declarations of my deafness or underestimate my degree of hearing loss. Most of the time I don’t really care how my hearing is judged, but every now and then folks decide to call me out for what they perceive as inconsistency between my acting like a hearing person and my statement of my deafness — they will say “You don’t sound deaf”, or they will even try to test my hearing. Their nosy and inappropriate questions remind me of a hearing test that I failed the summer before my senior year of college.

I was hired by a mining company to participate in secondary gold exploration in northeastern Nevada. We lived and worked in a camp several hours from the nearest town. My field partner and I were hired to collect and log the rock cuttings (broken bits of rock produced by drilling) from various prospects within the claim.  If we saw some promising cuttings, we sent them off to be assayed for their gold content.  The mining company was hoping to find some high-grade Carlin-type disseminated gold that would make it worth setting up a mine in this remote high desert locale. Spoiler alert: We never did find good enough gold at that location. But the company paid us well for that summer of exploratory work. This job meant that my field partner and I got to hike around in the rattlesnake infested high desert every day to retrieve cuttings from the drill sites. The drillers would move the rig every week or so to a new site that we had previously marked for sampling. I mentioned to my co-workers that I couldn’t hear rattlesnakes and ask them to warn me if they heard a rattle when we were moving though the brush. I also took care to stomp the ground when I ventured someplace craggy where rattlesnakes might lurk. While I knew that rattlesnake bites were treatable, I didn’t relish the idea of an emergency 2+ hour drive to the nearest medical facility.

After one long day, I was in camp and standing around chatting with my co-workers (my field partner and the camp cook) and suddenly their eyes opened wide and their mouths formed startled “O”s. They were stunned and clearly were no longer listening to whatever fascinating and captivating story I was talking about at the time. 

“Look behind you!”

I turned around and 5 inches from my face was a writhing burlap bag.  The bag was moving in all sorts of directions consistent with a bagged and very angry snake. 

Yikes!  

The drillers had decided to test my hearing loss and caught a rattlesnake in the bag. They wanted to see if I really wasn’t able to hear the snake. While I was babbling away, they snuck up behind me and held the bag inches from my head waiting for my reaction.

I learned a couple things from this. #1 Never trust drillers. #2 This experience also taught me that my lived experiences aren’t appreciated by most hearing people and some of them won’t trust my own assessment of what I can and can’t do. Sometimes they will test me to see if I’m ‘for real’. “Can you hear me if I cover my mouth?” Sometimes they will doubt my abilities. “You can’t accept this job because it involves visiting construction sites with heavy equipment that you won’t hear.” Sometimes, they will presume what accommodations I need without asking me. “Zoom has auto-captions, so I figured you were all set.” It is no wonder then that sometimes it is easier for deaf/HoH not to disclose their deafness and thereby avoid dealing with inappropriate responses. If we just work hard enough, we can pass for hearing and no one will know or ask anything.

But not disclosing my deafness isn’t safe for me. Not disclosing and working hard to pass as hearing is harmful to me in that I’m doing a lot of work just to stay in place and that impedes my ability to thrive. Just like I benefit from my field partner calling out to me when they hear a rattle, accommodations in my academic career allow me to participate more fully and avoid both harmful misunderstandings and grueling listening fatigue. This rattlesnake-in-a-bag experience prepared me for an academic career where my colleagues, fellow data loving scientists, want to see direct evidence of my invisible disability.  

So, when I’m asked inappropriate questions about my deafness, I picture in my mind that writhing burlap bag. I’ve got this — after all, you are the one holding a bag with a pissed off rattlesnake.

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

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

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

Tell us a bit about your background.

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

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

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


Tell us a bit about your background.

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

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


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

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

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


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

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

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

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

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

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

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


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

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

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

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

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

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

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

6 Ways to Dismantle Barriers for Disabled Faculty on Campus

-Stephanie Cawthon

This is a repost from Dr. Stephanie Cawthon’s blog, where she explores topics such as educational access, equity, attainment and deafness. ‘6 Ways to Dismantle Barriers for Disabled Faculty on Campus was originally posted on April 8, 2021, along with a downloadable infographic.

Infographic summarizing the 6 activities listed in the main text that can dismantle barriers for disabled faculty. Each action is presented in a different color with pared down representative drawings.

As higher education strives to be more inclusive and open to all, historical barriers are being dismantled. Yet these efforts often overlook a key group: disabled faculty. 

Faculty are an essential part of any campus. Expectations for their work are high — develop and teach courses, advise and mentor students, and serve their institutions and fields of study. Doing this well provides a critical foundation for students to prosper and grow, but it is a demanding, dynamic, and complex juggling act — especially if you factor in disabilities that are frequently unconsidered, unacknowledged, and unaccommodated. 

I have participated in committees that discuss campus accessibility, often as the only disabled faculty member. There’s a lot of work to be done. Here are six ways to get started and support disabled faculty on your campus.

Assume faculty do not disclose their disabilities

Many students do not disclose their disabilities when they arrive at college and neither do most faculty, attempting to avoid the persistent negative stigmas against people with disabilities. Faculty who face high stakes decisions for tenure and promotion have even less incentive to disclose. 

Disability is also variable and needs may change. Some physical and mental health conditions are sudden, while some are progressive and may change over time.

Recognize ableism exists on your campus (and work to eliminate it)

Disabled people face discrimination and oppression both in their professional lives and in society as a whole. Ableism — or attitudes and behavior that people without disabilities are more valued than those with disabilities — is embedded in our systems and in the design of our workforces, including academic institutions.

Disabled faculty experience marginalization and microaggressions on a daily basis on campus, including:

  • barriers in physical buildings and online classrooms.
  • lack of access at all university activities.
  • exclusion from disability accommodations and outreach.
  • negative assumptions about their contributions to academic life.

Even simple faculty meetings can be challenging and overwhelming for a disabled faculty member to navigate, especially if they are newly hired. 

Include disability in campus diversity efforts

Diversity and equity is at the center of efforts to reduce gaps in opportunity afforded to white, male faculty from high socioeconomic and elite backgrounds. Campus-wide initiatives are on the rise across the nation in an effort to respond to these systemic and historical inequities.

But disabled faculty are often not included in policy or practices geared to increasing diversity. Check the diversity mission statements at your institution. Is disability recognized as a part of campus diversity? Are disabled faculty represented in decision-making about improvements to campus and its climate?

Make it easy to request accommodations and encourage flexible work options

Disabled faculty often face significant institutional and attitude barriers when they disclose their disability and access needs. First and foremost, have a clear and centralized process to make accommodations requests (and have them paid for, so there is no budgetary haggling). This can also reduce the hassle and stress of advocating for access.

Also consider making flexible work options available to all faculty, reducing the need to make special requests based on disability status. As we have learned during the pandemic, flexibility and options that were never before accepted as part of regular workspace interactions are now what we use for everyone.

Ensure all aspects of their job are accessible

Faculty members have many roles within the campus community: teacher, advisor, researcher, committee member, supervisor, advocate. 

When thinking about accommodations, institutions often focus only on what is needed for formal instruction or when the faculty member is in class with students. Institutions instead must think holistically about accessibility — how to provide equal access to all of the social, cultural, and interpersonal aspects of campus life. At your college:

  • How do disabled faculty engage with students during office hours or colleagues during meetings? 
  • Are there captions on videos displayed around campus?
  • Are accessibility supports available for guest lectures and events? 
  • Can faculty members be included via video platforms if physically coming to campus isn’t possible? 

Lead with intention

A culture of access must come from the top. And it must come quickly. Each experience of ableism and inaccessibility is cumulative, resulting in a significant psychological and emotional toll. Disabled faculty are often tired and demoralized, and feel unwelcome in academia. This chronic marginalization can become itself a barrier, above and beyond the policies and behaviors of the institution.

Eloquence is Overrated…and Exhausting

white woman with dark shoulder length hair

–Hi there. I’m Sara, and I’m almost deaf. 

As folks with hearing loss, we have been trained to speak clearly so that we mask our deafness and can be accepted to be as capable as the hearing. While people associate academic brilliance and intelligence with eloquent elocution, we know that this correlation isn’t true. Linguistic bias exists.   

The recent social narrative surrounding President Biden’s stuttering reminds me of The King’s Speech in which Colin Firth plays a tortured King George VI dealing with the emotional rollercoaster only a profound stutter and pressure of public speaking could bring. To me, speaking eloquently seemed like an impossible request. Of course, Firth does so in a crescendo-like, climactic, Oscar-winning performance that had me rolling my eyes. But it also made me all warm and fuzzy inside. I do understand the rewards of accomplishing the task, but is it all worth the physical, mental, and emotional stress?

Is eloquence overrated? 

Literacy abilities are equated with intelligence: both what kinds of literacies we have and the expressions of those literacies. This is problematic. For example, Standardized White English is reinforced as the societal norm in classrooms, the media, on exams, in cultural narratives; consequently the “good” English speaker is centered in the academic sphere – the person who is articulate, eloquent, and has native or near-native English fluency – marginalizing a vast swath of experiences.

Below are reflections from two deaf The Mind Hears readers that capture the emotional and mental tension of performative eloquence. Their experiences also honor, in a small way, the progress we can make towards a broader and more inclusive definition of what it means to be articulate.  

Sara Halpern

The Ohio State University, Modern Jewish & European History

 

Hello, I’m Sara – without an H, thanks — and I was born profoundly deaf in 1985. I learned language through lipreading for the first four years of my life. I still missed out a lot because I was not overhearing conversations or listening to Sesame Street (I liked Mr. Rogers better; at least I could read his lips). Once I was implanted in 1989, there was a period of intense audio therapy before I started kindergarten. Then I continued with speech therapy until I graduated from high school in 2004. While those therapies are no longer part of routine, my mishandling of the spoken and written English language haunted me throughout college and early years of graduate school. 

Like Sara, I internalized that the notion of articulateness, including a strong grasp of my native language, signified intellectual intelligence. I received this messaging when I had to take all those standardized exams, including from the Department of Education and College Board (including AP and GRE), where the rubrics were clear. Phrases such as “well written” and “sophisticated thinking” confounded me. I knew I was smart; I read well above my grade level but somehow I could not spout the “right” words or formulate sentences that could make sense to others.

My own speech pattern further hampered my ability to deliver the way people like the Obamas or George Clooney could. I hated public speaking of any sorts because they were always graded on my ability to speak clearly, pronounce every word correctly, and slow down. Coming from a family of New Yorkers with their rapid fire conversations, it hurt me that I was not allowed to blend in my own family either. Where was I supposed to fit in within the educated, middle-class American ideal of “articulateness” and get an A+ in that?

All that changed when I went abroad to study German and Hebrew and research in various countries where English was not the native language or where English accents were different from my own (Australia and the UK in this case). I found that no one cared how I spoke so as long as I was understandable, which meant slowing down and pronouncing words clearly as they were doing. Since I was doing the same in German and Hebrew, this practice eventually influenced how I spoke English. Every time I returned to the United States, I carried this practice with me and native English speakers responded more positively than before. (Still, every now and then, I get asked if I’m from Germany…) 

After these experiences, I have more or less given up striving to fit ideal standards as imagined by bureaucrats in the Department of Education and the College Board, because we are living in a globalized world where English is the most widely used language, spoken in diverse manners. We are all intelligent but in our own unique ways.

Young white woman sites with a canyon behind her. She wears a baseball hat and glasses. The wooden  sign next to her says "Ooh Aah Point".

Alma C. Schrage

University of Illinois Champaign-Urbana, Natural Resources and Environmental Science

I feel like deaf/HoH folks get socialized early to fit in, to pass, because often the reaction if we say “what?” is being treated as if we are not intelligent…which is kind of a double bind because we can get stuck in situations where we have no idea what is going on and get caught in it.

When I started high school, I joined Model UN because a friend was in it and I wanted to prove I could do it. I had to rely on my partner to relay what everyone was saying. There wasn’t a whole lot of time to communicate, so often she would say “Talk about this issue and why it’s bad because –” That worked fine because I was comfortable ad libbing, and it actually went really well — we got an honorable mention, which was kind of amazing with it being our first conference. But at the same time the award felt kind of empty — it felt like I was just a mouthpiece and not making any of the decisions or critical thinking because I wasn’t receiving the information I needed to do so. I had a mind and was looking for conversation and reciprocity, not empty, performative acts of speaking so the experience was frustrating. I quit after that first conference. Ironically my hearing friend and debate partner was really angry about me quitting – the fact that it was inaccessible didn’t really seem to register with them.

The isolation and lack of access that I experienced as child and teenager because of my good speech is part of what pushed me towards learning American Sign Language (ASL) as an adult: It supported the conversation and connection that I craved, both with signing deaf communities and deaf mentors, but also with the hearing communities I interact with through my advocacy, my work, and going about my daily life. If you sign, people immediately get it — Oh, she’s deaf — and they are more willing to do things like write stuff down or use gestures for basic communication.  I’ve found that as an English and ASL user it has been easier to get hearing academics to think more concretely about accessibility and inclusion, which is desperately lacking in academia. Signing has also made me a better self-advocate when I do speak; my experiences with signing Deaf mentors has pushed me to be more assertive and less patient with hearing attitudes and behaviors that are inaccessible or blatantly discriminatory.

Because of the intersections of my privilege — being a white academic — and my particular deaf experience – having reading as my primary access point to language and learning, plus clear speech – I’ve largely been able to dodge people’s prejudices about speaking “good English” and intelligence. The flipside of that coin has been how it renders my deafness invisible. My speech has often fooled hearing people into thinking I understand more than I do; how could a person profoundly deaf speak so well?

A Way Forward

As we wrote this together and I read about Sara and Alma, one theme became clear: spaces such as The Mind Hears where we can converse are small but integral to understanding the deaf experience beyond ourselves. Adapting to adaptations while being unexpectedly advantageous or savvy feels ironic, but listening, really listening to others’ narratives can offer new ideas for advocacy.   


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.

Making your in-person and remote workplaces accessible for your deaf/HoH colleagues

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 2019 and 2020), we have updated our list of recommendations for making your workplace accessible. The listing now includes best practices for remote meetings, a format that dominated our professional interactions in 2020 and will play a role in ‘normal’ operations going forward. While many presume that remote work increases accessibility for deaf/HoH, this is not always the case (see post on suddenly remote teaching and post on accommodating a pandemic). 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. Here we outline the best approach 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 conferences, post 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 here and 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. Reaching the goal of achieving an academic workplace accessible to deaf/HoH academics is a journey.

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.

Conquering faculty meetings (or not…) when deaf/hard of hearing

-Ana

Making it as a deaf/hard of hearing (HoH) academic can often feel like a game of whack-a-mole. Between research activities, teaching duties, and that large nebulous category ‘service,’ communication challenges lurk around every corner. Some I can troubleshoot fairly quickly— i.e. arranging a classroom so there is walking space between desks and I can approach my students to better hear them (mole whacked!). Other challenges have required a few more tries, but I’ve eventually figured out viable solutions—i.e. belatedly acquiring an FM system was a game changer when it came to group discussions of papers (mole missed, mole missed, mole whacked!). But there is a situation that I have not yet been able to master, even after many, many years: the departmental faculty meeting.

I had less than a passing knowledge of that special faculty obligation that is the Departmental Faculty Meeting when I started out as an assistant professor. I’d heard some friends and my spouse—people who’d gotten faculty positions before me—mention them, usually accompanied by eye rolls. But I didn’t really have any expectations about what these meetings entailed or what my role in them might be.

Cue over to my first faculty meeting as a deaf/HoH faculty in a predominantly hearing institution. I walked into a an overly large room (overly large for the number of people we had) that looked somewhat like this:

A room with chairs in rows, in which a faculty meeting is taking place. Stick figures are scattered throughout, with one twisting and turning her head in an attempt to speech read what is being said by people in all corners of the room.

We were 15-20 faculty seated in a classroom meant for over 40, with everybody seemingly intent in maximizing their distance from all others. After an hour of feeling like a bobblehead as I desperately twisted my neck trying to speech read my department chair in front and my colleagues in all corners of the room, I came to three conclusions:

1. Faculty (who would have thought!) are just like undergrads, and will beeline for chairs in the last rows of a room

2. Important stuff got discussed in faculty meetings (I think I caught some words that sounded like budgets and curriculum…)

3. I was dead meat, because I could not follow anything that was being said

So I went home and cried. My first year as an assistant professor, I cried after every single faculty meeting. Granted, we didn’t have that many faculty meetings back then, but enough to confirm my deep-rooted fear that I was certainly not going to survive this career path. It was clear to me in my first year that faculty meetings were whipping me soundly; if I were keeping score I would call it: Faculty Meetings 1–Ana 0.

Of course the obvious thing to do would have been to ask my department chair to change the setup of the faculty meetings. After all, my colleagues knew I was hard of hearing and relied on hearing aids for communication. But I was terrified that if my department caught whiff of how much I struggled to hear, this would sow doubts about my competence as a teacher and doom my tenure prospects. Besides, although I had a long history of self-reliance, I had zero experience in self-advocacy. Among my many thoughts were “What in the world falls under the ‘reasonable’ umbrella in reasonable accommodation?” and “oh, wait, I’m not a US citizen, does the ADA [American with Disabilities Act] even cover me?” (I still don’t know the answer to this one).

Towards the end of the academic year I found some courage to request CART (Communication Active Real Time Translation) for a final retreat-style faculty meeting. The captionists were to sit next to me and type out all discussions. My chair knew about the CART, but I (foolishly) didn’t alert the faculty. At the beginning of the meeting, a colleague expressed discomfort about the presence of unknown people in the room (the captionists). Though an explanation brought a quick apology, I felt marked. Added to the captioning time lag that at times jarred with what I could hear, I scored another loss: Faculty Meetings 2–Ana 0.

A transmitter with an omnidirectional microphone placed on a table.

My second year brought a new department chair, a tiny increase in self-confidence, and also an increase in the frequency of faculty meetings. Aaagh! I finally resolved to approach my chair and request that faculty be seated in a round square table format during meetings so that I would have a better shot at speech reading. Simultaneously, I acquired a new FM system and a transmitter with an omnidirectional microphone — a forerunner of the one pictured here. I would place it on the center of the table and voila! OK, so it wasn’t quite 100%, and I was still missing most of the banter and jokes, but jumping from 50 to 90% comprehension (These are completely unscientific numbers. Naturally, there’s no way for me to ever tell how much I’m missing; my estimate is based on my confusion level at the end of meetings) felt wonderful. This was it! I was going to nail this faculty thing! New score: Faculty Meetings 2–Ana 1!

Then my department grew. 

Schematic of a conference setting in a hollow square format.

Okay, I get the fact that department success is gauged in part by growth. And yes, improving faculty-to-student ratios is always a good thing. But growth meant that in order to sit all of us in rectangle we were now sitting like this:

Ummm, with a gaping hole in the middle, where is microphone transmitter to go? I started putting it next to me, but of course this makes it much less likely to pick up voices from those sitting farther away. I considered going back to CART, but at this point I had had my first kid and often had to rush out of faculty meeting before the end in order to make it to daycare pickup; I couldn’t bring myself to subject others to my sometimes ad hoc schedule… so I muddled along and considered this round lost. New score: Faculty Meetings 3–Ana 1.

A Lego knight with shield, sword and helmet. It is pretty happy that no faculty meeting can hurt it now.

Fast forward a few years—the department kept growing. We were now meeting in a large room that combined my two meeting nightmares: square table arrangements with a central hole AND faculty sitting in rows (we no longer all fit around the square). Even worse… recall that faculty are just like undergrads….most actively choose to sit as far away from the center/front of the room if given an option. So much for our “round table.” 

I started to cultivate the attitude recommended by some of my hearing colleagues… faculty meeting, bah, waste of time, place where people go to hear themselves talk, nothing happens there that couldn’t be solved more quickly through email….bah! OK, so attitude was my new weapon armor. By my calculations we were now at this score: Faculty Meetings 4–Ana 2. Ha! A comeback!

Schematic of a conference set up that involves chair lining up the perimeter of a room, as well as table set in a U-shape, with a peninsula in the center also lined with chairs.

A few years later, further department growth and another new chair. But I told this one about my difficulties following discussions whenever we sat in rows. Alas, we were now too many faculty to sit in any sort of rectangular format that would fit in a room. I had started in a department with around 20 people and we now had more than 50! To maximize my visual contact with faculty in a room, we came up with this pretty funky rectangle with peninsula shape. Ummm… perhaps we can call this score: Faculty Meetings 4–Ana 3? We would have patented this design, but there were two problems. The perimeter of the room (around the rectangle) still had to be lined with chairs in order to have enough seating should everybody decide to show up. And see observation #1 above: faculty are just like undergrads. This means that people prefer to take the perimeter spots before they take any rectangle spots. And it turns out that people prefer to STAND IN A CORNER of the room before taking ANY of the peninsula spots in the center. New score: Faculty Meetings 5–Ana 3.

So we get to where we are today. I catch myself wondering how traitorous it is for me to dream of a smaller department while also cultivating a blasé attitude towards faculty meetings so that I release myself from feeling obligated to try and follow the discussions. In a way, this outcome is an anthesis of what a blog post on thriving in academia with deafness should be. Over a decade of trying to find a solution for a way to participate effectively in what should be a routine part of faculty life has led instead to something that resembles an arms race and I have no solution to offer. At the same time, however, this post on getting by in academia with deafness portrays pretty effectively the reality of trying to adjust to shifting communication settings as a deaf/HoH academic. I hesitate to sound as if I’m advocating “managing” as opposed to “thriving” when it comes to facing the fluctuating demands of academic life, but sometimes, while we’re whacking those moles, “managing” is what we can do.

Pandemic addendum: I wrote this post before the Covid-19 pandemic struck, never imagining the ways in which my faculty meeting odyssey would be upended yet again. The thought of meeting in-person with 40-50 colleagues now seems so distant, and new “moles” have appeared in our now virtual faculty meetings (ahem…thinking here of all those who choose to speak with their zoom cameras OFF). Yet I’ve also picked up some new management strategies in the interim… For example, Michele’s recent post points out some of the silver linings for deaf/HoH academics in working from home. And from Paige Glotzer’s profile I’ve now learned of the existence of Catchbox throwable microphones; if when life returns to normal, could this be my new faculty meeting strategy? I can’t wait to see

To Hear, or Not to Hear? The Mental Gymnastics of Hearing Device Use

A word cloud showing the most common appearing words in the post in different colors.
Alt text. A word cloud showing the most common appearing words in the post in different colors.

-Sarah Sparks

I had planned to write this post about listening fatigue, but as I began writing I realized that a related yet rarely discussed topic resonated more in the moment. This post is my attempt at addressing the complexity of that topic.

The mental gymnastics involved in deciding whether and/or when to use hearing devices is not discussed often—at least publicly. This can be an uncomfortable topic because the decisions about amplification use made by deaf and hard of hearing people have an impact on how we are viewed within our professions, the willingness of other people to take our accommodation needs seriously, and the assumptions made by others about our communication needs and preferences. Ideally, decisions about amplification use should be made freely. That doesn’t always happen in the context of an audist society. Some might argue that because of audism (the belief that hearing and speaking are superior to deafness and signing, and the consequent discrimination), none of these decisions are ever truly free.

I am against audism in all its forms, and I also believe it is possible to genuinely like and want amplified sound for its own sake, not because of attempts to assimilate to the hearing world. But perhaps more often than we would like to admit, deaf and hard of hearing (HoH) professionals who use hearing devices make decisions about device use based on what others expect rather than what feels best to us as individuals. 

I identify as deaf. I am a full-time, bilateral cochlear implant (CI) user who also communicates in and loves both American Sign Language (ASL) and English. In times past I would wear my CI processors from the moment I woke up in the morning until about an hour before going to bed at night, sometimes topping 18 hours of device use in a day. That was exhausting, and I’m glad that I have since found a CI use pattern more suited to my needs. These days I am still a full-time CI user in that my device use averages approximately 8 hours per day, but rarely do I use my processors outside of professional situations. I’m a pediatric audiologist, and I work with many hearing children and their parents as well as the hearing parents of deaf and hard of hearing children. I care about communicating with all of them in their native language whenever possible. Because of this, my processors go on as soon as I walk into clinic in the morning and they come off as soon as I’m on my way home in the evening. If I have class or a meeting in the evening, generally I will keep them on for that purpose. 

Mostly, I’m comfortable with my current CI usage. But my choices come with unique kinds of personal and professional costs that affect neither hearing professionals nor deaf professionals who don’t use devices. The decision to use my CIs as frequently (or infrequently) as I do has a downside that I don’t discuss often: the constant need to evaluate why I use them (or not). Every day, I notice how my decisions interact with others’ conscious and subconscious expectations for me not just as a deaf person, but also as a person with auditory access. Confident as I am in my decisions to switch up my communication—ASL, spoken English, or written English depending on the situation—often I find myself wondering about my CI use pattern and messages that others may infer, independent of anything I say directly.

Does using my CIs full time lead others to believe that I value spoken language over signed language? Maybe I need to clarify every other day that I love ASL and that spoken-language access isn’t the only reason I use my CIs…

Do my coworkers and other acquaintances see my CIs and assume that if my processors are on, they should always speak instead of sign? Maybe I should use my processors only when I want people to speak to me, but then I wouldn’t get to use them for many of the sounds I genuinely want to hear…

How does my CI use impact the willingness of employers and conference/event organizers to fulfill requests for accommodations? In the past, people have heard the clarity of my speech and thought I was exaggerating when I described the limits of my CI hearing. Maybe I’ll have to explain for the thousandth time that my speech is so clear because I wasn’t born deaf, lost my hearing progressively, and don’t hear nearly as well as I speak. Maybe this is why some deaf professionals who can hear and speak choose not to…

If I prefer to speechread my way through certain kinds of interactions, am I leading others to believe that I don’t need visual language? Maybe the access problems I experience are my own fault for opting to communicate in two languages…

If I remove my CI processors for a few hours while among colleagues in my profession, will they see me as irresponsible and make wrong assumptions about how I counsel my own CI patients? Maybe they’ll lose trust in me as a clinician or researcher and assume that I’m recommending lackadaisical or capricious device use…

My signing is clearly non-native: if I’m around other deaf professionals, is wearing my processors (even without batteries) necessary to remind them that I’m not a hearing person? Maybe they’ll see me as just another hearing audiologist if I’m not wearing them… or despite my wearing them…

Are my CIs sending the message that deaf/HoH people can be audiologists and hearing scientists only if we use CIs? Maybe I’m hurting someone else’s opportunities unintentionally just by trying to be deaf in the way that feels most okay for me…

What message does my observable CI use pattern send about deaf/HoH professionals who don’t use hearing devices at all or use their devices differently than I do? Maybe my own decisions affect whether they can get their access needs met…These are just a few of the questions that come to mind when I’m deciding whether to turn on my artificial, electronic auditory access. Needing to think through these and other costs of my CI use pattern is almost as exhausting as listening fatigue itself. Multiple times a day, I have to decide which is more important: using my CIs in the ways that feel best to me, or using them in ways that are least likely to result in negative consequences for me and other deaf/HoH professionals. Every day, I have to decide which battles I’m willing to fight and how my choices about CI use affect my ability to do so. I know that I can’t be the only deaf CI user who struggles with navigating these concerns both inside and outside of academia.

A dark haired woman, with hair pulled back and dark-framed glasses is smiling. She wears a dark colored blazer and has a cochlear implant.
Alt text. A dark haired woman, with hair pulled back and dark-framed glasses is smiling. She wears a dark colored blazer and has a cochlear implant.

Dr. Sarah Sparks: Dr. Sparks holds a clinical Doctorate in Audiology (Au.D.) from Gallaudet University. She has experience in a variety of clinical settings, including a university clinic, private practice, school for the deaf, and two pediatric hospitals. She completed her final year of clinical education at Boston Children’s Hospital where she also held a fellowship in the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program. She is currently studying at Gallaudet for a Ph.D. in Hearing, Speech, and Language Sciences. Her clinical and research interests include pediatrics, vestibular assessment and rehabilitation, cochlear implants, the audiologist’s role in counseling and self-advocacy skill development, and audiology services provided in American Sign Language. Her Ph.D. dissertation research will focus on vestibular dysfunction and its impact on deaf/HoH children.

Navigating a masked world when you are deaf/HoH

-Ana

While the pandemic rages around the world, I know I have been incredibly lucky. Like many, I have struggled to keep my kids busy and to some degree engaged with their education, struggled to keep any semblance of work productivity, and struggled to remain optimistic about a return to a post-pandemic life that resembles my pre-pandemic one. However, I have been healthy, and nobody close to me has fallen sick. And—through the accident of timing—I have also experienced the pandemic in two geographic areas, one of which has thus far managed the coronavirus quite well (Germany), and one where I arrived once it was under control (Massachusetts, USA).

Definitely lucky.

And yet… There is a part of me that very much wants to throw a tantrum and howl at the moon about the unfairness of it all. All because of the need for face masks, which have greatly reduced my ability to communicate. 

In the last 4 months, face masks have emerged as the cheapest, most reliable method to stop the spread of COVID-19. We all have to wear them. And while all the deaf/hard of hearing (HoH) people I know are 100% behind mask wearing, many of us have been put in a bind. Navigating effective communication when out and about is never effortless for us. Lip-reading does not capture all spoken sounds, and there is a great cognitive load involved in filling the gaps to understand what is being said. Add masks, and communication with others becomes nearly impossible. 

To begin with, face masks make it very hard for those of us relying on speech- and lip-reading and on signed languages to understand speech.

This has been documented very eloquently in this article by Sara Nović for the Washington Post; in this interview of Gallaudet professor Dr. Julie Hochgesang; in this article by Shari Eberts for the “Living with Hearing Loss” blog; and this post by Nehama Rogozen for Slate magazine.

And, despite the feel-good idea of face masks with clear “windows,” our communication travails aren’t likely to end any time soon, as explained by Katherine Woodcock (@safeandsilent) in this and this blog post. 

And, surprisingly, masks pose an unexpected hazard to our hearing devices.

Alt Text: A worried face trying alternative orders to putting on a behind-the-ear hearing aid, face mask, and glasses. Each time the objects end up in a tangled mess (many thanks to M. Cooke for help with animation).

As a wearer of behind the ear (BTE) hearing aids and glasses—and now masks—I find that there are just too many things hanging from my ears. Trying to adjust or remove any of them leads to a tragi-comic (yes, I am still capable of laughing at myself as I nurse my tantrum) Rube Goldberg machine chain reaction that inevitably ends badly for at least one of my accessories. I derive some solace (and humor) from knowing I’m not the only one facing these issues: 

In the first frame the face of a person wearing a behind-the-ear hearing aid, face mask, and glasses celebrates that everything is on correctly and they can go out. In the second frame the glasses have fogged up.
Alt text: In the first frame the face of a person wearing a behind-the-ear hearing aid, face mask, and glasses celebrates that everything is on correctly and they can go out. In the second frame the glasses have fogged up.

But it is a pyrrhic sort of consolation. Inevitably I find that the effort of trying to navigate a masked world becomes too laborious, leading to a temptation to disengage and isolate. I want the world to beat COVID-19; I also want to not be cut off from the world. On the worst days it seems neither is possible.

Many of us are struggling to come up with solutions for this conundrum wrapped in a mask. Suggestions of relying on pen and paper or speech-to-text apps are helpful for short interactions, but I see friends starting to cautiously socialize in masks, an activity I feel cut out of. While I know that there is likely not a one-size solution for all of us deaf/HoH, I would love to collect suggestions on how to be a part of the masked world.

I leave you with some parting words from Sara Nović to hearing people:

“The burden of communication has never been solely on deaf people. The pandemic has simply unmasked the fact that we usually do most of the work for you. Now that we physically can’t, we need you to do your part.”

The Mind Hears affirms that Black Lives Matter

-Michele Cooke and Ana Caicedo

The murders of George Floyd, Breonna Taylor, Ahmaud Arbery, and too many others stem from historic and continued systemic oppression of Black Americans. The disabled and deaf communities are not without white privilege and we need to do the uncomfortable work of recognizing and dismantling these privileges. BarbaraSpiecker and Alicia Wooten express this beautifully in their Atomic Hands video (link here). We encourage you all to watch the video.

White privilege within the Deaf (signing deaf) community has been manifest as better education for white Deaf students and a greater proportion of whites in leadership positions within the Deaf community. Furthermore, a study of the Post-secondary achievement of Black Deaf People in the US by Garberoglio et al (2019)  reports that more Black deaf people are looking for work than white deaf people. David A. Player’s blog provides a summary of white deaf privilege. 

“White people with disabilities also have a white privilege because whiteness superseded all forms of identities that could be considered as deviance attributes. They will also get a form of assistance from a white able-bodied hearing dominate society” 

David A Player, Dear White Deaf People  (link here)

We deaf and hard of hearing academics know what it is like not to be heard. We know what it is like not to be included. But white deaf/HoH academics have the privilege of our whiteness as we interact within our communities and navigate our careers.

The Black community in the US has historically helped the deaf and disabled communities in their struggle to be heard and recognized. In 1977, disability activists led nationwide sit-ins to protest the lack of enforcement of Section 504 of the Rehabilitation Act of 1973. Section 504 prohibits institutions, such as universities, that receive federal funds from discriminating on the basis of disability; however, until 1977, there were no regulations to enforce the law. During the 26-day-long sit-in within the Federal Building at 50 United Nations Plaza in San Francisco, the Black Panthers fed, assisted and supported disabled protesters (read here or here or here about Bradley Lomax’s key role in the protests). The sit-in concluded with the signing of regulations that enforce Section 504. By the way, these regulations are why US universities have disability service centers for students. During the Deaf President Now protests in 1988, Gallaudet University students shut down campus to protest that the University had only had hearing presidents in its 124 year history. During that week-long protest, the local Black community supported Gallaudet student protesters. Both of these impactful protests as well as the 1990 Capital Crawl led the way towards the passing in 1991 of the comprehensive Americans with Disabilities Act, which prohibits discrimination on the basis of disability regardless of whether businesses receive federal funds.  

It is long past time for us to support our Black colleagues, friends, and neighbors. The Mind Hears commits to amplifying Black deaf/HoH voices and perspectives.

The murders of George Floyd, Breonna Taylor, Ahmaud Arbery, and too many others stem from racism and the systemic oppression of Black Americans. The disabled and deaf communities are not without white privilege and we need to recognize and dismantle these privileges. During the Section 504 sit-ins of 1977 and the 1988 Deaf President Now protests that contributed eventually to the 1991 Americans with Disabilities Act, the Black community aided and supported protesters. It is long past time for us to support our Black colleagues, friends, and neighbors.