Through working on The Mind Hears since Sept 2018, I’ve had the chance to meet some amazing deaf and hard-of-hearing scholars and researchers.Our backgrounds, areas of expertise, degrees of hearing, and jobs differ.But one very common experience for deaf/HoH at mainstream institutions (i.e. not at a primary deaf/HoH university), is thae lack of mentors who are deaf/HoH. This isolation drove us to start the blog. But our common experiences lead to the question: Where areall the deaf and hard-of-hearing academics?
The American Speech Language Hearing Association classifies degree of hearing loss on a scale of mild (26-40 db), moderate (41-55 db), moderately severe (56-70), severe (71-90), and profound (91+) (ASHA). Despite these straight-forward definitions, understanding the statistics on hearing loss requires nuance. While tests prove that many people have some degree of hearing loss, only a subset of these folks wear hearing aids or use signed language; even fewer request work accommodations. The National Institute on Deafness and Other Communication Disorders, part of the federal National Institutes of Health, reports that 14% of the working age adult population aged 20–69 has significant hearing loss (Hoffman et al., 2017). This 14% report a greater than 35 decibel threshold for hearing tones within speech frequencies in one or both ears (NIDCD). The number of people with high-frequency hearing loss is double the number with speech range loss (Hoffman et al., 2017). However, not hearing watch alarms or computer keyboards is not considered to be as impactful as missing speech range frequencies.
As Figure 1 shows, the statistics on hearing loss are further complicated by age, which correlates with incidence of hearing loss. Among folks aged 60–69 years, 39% have hearing loss (Hoffman et al., 2017). Within the larger disabled community, we crips joke that we are a community that can recruit new members. Joking aside, the reality is that if you are a hearing person reading this, there is a very good chance that hearing loss will affect you or someone close to you during your working lifetime. The Mind Hearscan be a valuable resource for folks with newly acquired hearing loss.
So where are the deaf and hard-of-hearing academics? Doctoral degrees are generally awarded to academics between the ages of 20 and 29; the incidence of significant hearing loss within this population is 2.2% (Hoffman et al., 2017). The National Science Foundation’s annual survey on doctoral recipients reports that 54,664 graduate students earned PhD degrees in 2017 (NSF 2017)—wow, that represents a lot of hard work! Great job y’all! Now, if the graduate student population resembles the general population, then we should expect that 1202 of those newly minted PhDs are deaf/HoH. Instead, the survey reports that only 654 PhDs, or 1.2%, were issued to deaf or hard of hearing people (NSF, 2017). This suggests that deaf/HoH PhDs have half the representation that they do within the general population.
Furthermore, the distribution of deaf/HoH PhDs is not even among the fields of the NSF doctoral survey. In 2017, as shown in Figure 2, each of the fields of Humanities and arts, Education, and Psychology and social sciences has a greater percentage of deaf/HoH than each of the fields of Engineering, Life sciences, Physical and earth sciences or Mathematics and computer sciences. It seems like I’ve heard of greater numbers of deaf/HoH scholars and researchers in the fields of Deaf Studies, Deaf Education and Signed Languages Studies than in other fields. This could impact the distribution. Or perhaps some fields are more friendly to deaf/HoH scholars and researchers. Nevertheless, deaf and HoH are underrepresented in all fields within scholars and researchers with PhDs.
So, what can we do? These numbers reveal why so many of us feel isolated in our experiences within academia. The Mind Hears is one effort to facilitate networking and raise awareness of inclusion issues for deaf/HoH academics.
Hoffman HJ, Dobie RA, Losonczy KG, Themann CL, Flamme GA. Declining Prevalence of Hearing Loss in US Adults Aged 20 to 69 Years. JAMA Otolaryngol Head Neck Surg. 2017;143(3):274–285. doi:10.1001/jamaoto.2016.3527
National Science Foundation, National Center for Science and Engineering Statistics. 2018. Doctorate Recipients from U.S. Universities: 2017. Special Report NSF 19-301. Alexandria, VA. Available at https://ncses.nsf.gov/pubs/nsf19301/.
You’re wearing your hearing aids, sitting at a conference presentation, feeling confident that you’re understanding what’s going on, when it happens. The audience reacts to something the speaker said, and you have no idea why. Until then, you’d thought that you were grasping enough of the presentation, but you’ve clearly missed something good. Reality check: your hearing aids might be good but you still can’t hear like a hearing person. I’ve been there. And I’ve found that when I’ve been able to get a good FM system set up at conferences, I can catch a lot more of the speaker’s remarks and subsequent discussions than when I try and go it alone with just my hearing aids. Getting FM systems to work effectively, however, can sometimes challenge even the most intrepid academic. So I thought that I would share what I’ve learned through several decades of requesting and using FM systems at conferences. I’ve occasionally used Real-Time Captioning (CART) and ASL interpreters at conferences, but someone more expert should post about those.
What is an FM system?
Frequency Modulation (FM) systems involve a paired transmitter and receiver that provide additional amplification to either a headset or, even better, directly to our hearing aids. That additional amplification can be invaluable in some difficult-to-hear situations. The audio signal is transmitted via waves within a narrow range of the FM spectrum—yup, the same as non-satellite radio. FM systems are sometimes called Assistive Listening Devices (ALDS). At conferences these systems can help by amplifying speakers’ remarks, audience questions, and ensuing discussions, as well as elevating conversations around posters above background noise.
Requesting FM systems at large conferences in the US
Because of the Americans with Disabilities Act (ADA), large conferences in the US will have a box to check on the registration page to request accommodation. If they provide an open response box, I typically write:
“I need a FM system with 60 decibels of undistorted gain. The system should have a neckloop or induction earhooks that work with the telecoil in my hearing aids. Headsets are not compatible with my hearing aids.”
Through years of bad experiences, I’ve learned to provide very specific instructions.
Although I provide these specifics, I am often disappointed when I arrive at the
conference center. Many conference FM systems are pretty weak and only provide only a small amount of clear amplification (maybe 15-20 dB). This might be okay for someone who has a mild hearing loss—such as some with recently acquired loss—but it pretty useless for me. At other conferences, such as at the 2017 American Geophysical Union, I’m offered a setup as in the photo at right.
Me: These are not compatible with hearing aids
Clueless but earnest conference liaison: Oh yes, they are! You just put the headset over your ears.
Me: Um no. I use behind-the-ear hearing aids and my microphones are behind my ears. This is why I specifically requested a neckloop to directly communicate with the telecoil in my hearing aids.
Clueless but earnest conference liaison: A what?
Clueless but earnest conference liaison: Oh. Well, why don’t you just take your hearing aids out and use the headset instead?
Me: Umm no. My hearing aids are tuned for my particular frequency spectrum of hearing loss. I asked for 60 decibels gain for the system to boost above what my hearing aids offer and to compensate for people speaking softly, people not speaking directly into the microphone. . . That sort of thing.
Clueless but earnest conference liaison: Huh. Well, we don’t have anything like that.
After such unfruitful conversations I usually begin sorting out my own accommodations with my personal FM system (more on that in a bit). The few times that I’ve pushed for conferences or their sites to find an neckloop or a stronger FM system, I’ve never had success. For example, at one conference, a team of six technicians met with me to tell me that there was not a single induction neckloop to be had in the entire city of New Orleans—their hands were tied. Sure.
Warning about accommodation requests:Although conferences are becoming more responsive, I’ve found that about a third of the time, my requests on the registration forms are ignored. I never hear back from the conference, and when I show up they have no idea what I’m talking about. So as part of my conference prep, I now contact them about a month before the meeting if I haven’t received notification. I also budget an extra hour or two when I first arrive at the conference to sort out the accommodations.
Paired FM systems versus direct wired rooms
With paired FM systems, one transmitter is paired to one receiver that you carry with you. The transmitter must be set up in the conference room in advance of the session and is usually patched into the sound system so that your receiver picks up signals directly from the room’s microphones. In order to set this up, large conferences need to know which sessions you will attend several weeks ahead of time. This means that you can’t pop from one session to another as our hearing peers might do at large conferences. Also, if two HoH people want to attend the same session, the room may need to have two transmitters patched into the sound system.
Newer (or newly renovated since 2012) convention centers in the US and UK may have built-in transmitters throughout the convention hall. This means that you can take any receiver into any room and instantly get amplification without setting things up ahead of time. This flexibility is quite nice! The picture at right shows a charging rack of FM headsets and induction loops for the Washington DC Convention Center. I was really looking forward to using those at the 2018 AGU meeting, but unfortunately, all the sessions in my discipline were in the Marriott hotel next door and the system didn’t work at all there.
Small conferences and meetings outside of the US
For small conferences, as well as meetings outside of the US where the ADA is not in effect, I bring my personal FM system. At the top of this post are pictures of the FM system that I first started using around 1994 (left) and my current outdated fourteen-year-old system (middle). I can’t get this set repaired anymore, so I’m going to get a new one like the one on the right. Some benefits of personal systems over conference-provided systems is that personal systems are more powerful. My first FM system had audio boots that hooked directly to my hearing aids (left picture) which reduces signal degradation that can happen with neckloops (middle image).
At small conferences, I put my transmitter at the lectern before each session to help me catch more of the speaker’s presentation. Alas, this doesn’t help with questions and discussions, which can be a large challenge. At some conferences where microphones are used for questions and discussions, I ask the AV crew to patch my transmitter into the sound system. Right is a picture of all the different adaptors that I bring with me to ensure that my transmitter will work with the venue’s sound system. Some of these may be outdated.
While patching my transmitter into the sound system has worked very well in the past, I’ve had problems lately. Maybe sound systems have become more fussy about patching in auxiliary outputs. I am also not sure whether the newest FM systems, which use Bluetooth rather than FM signal, even have input jacks. Another hack that I came up with is to put my transmitter in front of a speaker (the photo at left is my transmitter taped to a microphone pole in front of a speaker stand at the 2018 Southern California Earthquake Center annual meeting). This hack allowed me to access the presentations and discussions that used microphones.
FM systems in poster halls
If the poster hall is crowded, you can aim the microphone of the FM system transmitter towards any speaker to elevate their voice above the background noise. This approach has worked well for me when using my own FM system. Note that the systems provided by convention centers are not mobile; it is best to bring your own to use in poster halls.
FM systems are expensive (~US$1000 – $4000), and like hearing aids, are often not covered by US health insurance. Full-time students in the US are eligible for personal FM systems through vocational rehab (degree of coverage depends on income). Many audiologists may not be aware of this (my own weren’t!), but check with the disability office at your university and they can hook you up with your state’s vocational rehab office. These FM systems are worth getting before you graduate! Some employers do purchase FM systems for their workers because they can be critical for career success; however, I’ve yet to meet an academic who has successfully negotiated an FM system from their employer (and would love to hear if you have). While insurance didn’t cover my last FM system, I was able to use a health spending account through my employer that saved me from paying taxes on the device. It is my understanding that outside of the US, personal FM systems are nearly always paid for out of pocket.
Why am I so pushy?
Since I end up using my personal FM system most of the time at large conferences, you might wonder why I keep requesting accommodations. I do so because I want the conference center to know that we are here. I want them to know that deaf/HoH academics should be considered when they are planning their meetings and ADA accommodations. If we don’t make waves, they will believe that the level of accommodation currently offered is satisfactory. I’ve heard too many stories of older academics who stop attending conferences because of declining hearing, and younger HoH academics discouraged from academic careers because of the difficulty of networking at large conferences. We owe it to ourselves and our community to be counted, advocate for flexible, effective amplification systems, and share our successful strategies.
Is my experience consistent with your own? What successful strategies have you used for FM systems at conferences?
In May I received the outstanding researcher award from the College of Natural Sciences at UMass Amherst. This was a great honor and I even got to give a 3-minute acceptance speech. While the speech starts with some of the challenges, the main point is that my deafness shapes my approach to science in ways that benefit my research. PhD student extraordinaire, Laura Fattaruso, made a video of me re-enacting the speech and here is the transcript:
Academic success was not always expected of me. I have a severe-profound high-frequency hearing loss and was language delayed in my early education. The letters on the page don’t match the sounds that I hear so it took until 2nd grade for me to figure out the basics of reading. I also had years of speech therapy to learn how to pronounce sounds that I can’t hear. Just before middle school, some visual-based aptitude tests showed I actually had some talent and I also started to do well in math. So, then teachers started expecting more of me and as you probably figured out, I caught up well enough.
Now, as a professor at a University that serves a predominantly hearing community, my broken ears are a nuisance sometimes. But this 3-minute speech is not about overcoming challenges. Instead, I want to talk about something called <signing Deaf gain>. This sign is translated into English as Deaf gain or Deaf benefit. This term coined by Gallaudet scholars describes the value that Deaf and Hard-of-Hearing people provide to the larger community because of their differences. Our ecology colleagues tell us that more diverse ecological communities can better withstand stress than homogenous communities – so too with science communities. All of our differences make CNS stronger.
Here are three examples of deaf gain in my research approach
Deaf gain1: My way of doing research is intensely visual. My students know well that I have to show 3D concepts in the air with my hands and sketch whenever we do science. I don’t believe it until I can see it. We use the figures in our papers to tell the scientific story. In this way, my research is not about elegant verbal arguments and instead focuses on connections between ideas and demonstration of geologic processes.
Deaf gain 2: Deaf are known for being blunt. My students will tell you that my reviews can sometimes be painfully blunt. For deaf scientists, being understood is never taken for granted. So, we strive for clear and direct communication of our science.
Deaf gain 3: Being deaf in a hearing world requires stamina, courage, empathy, self-advocacy, a flexible neck to lip read people in the corners of the room and a sense of humor. An added benefit is being able to accessorize using blue hearing aids with blue glitter molds that match any outfit.
I’ve been lucky to have great students and colleagues who have join up in my Deaf way of science and we’ve had a blast. Thank you.
Do you share some of these characteristics? Are there ways that deaf/HoH gain has shaped your scholarship or research?
You are at a conference with ~150 experts in your sub-discipline from all around the world. The purpose of the conference is to advance our understanding by fostering in depth group discussions after provocative talks. This is the kind of conference where careers are made through well-delivered talks and insightful contributions to the discussion. While hearing academics may relish the opportunity to participate in such a conference, for us deaf/HoH academic these conferences are obstacles to our success.
For these small conferences you are likely the only person who needs accommodation for deafness and because the conference is small they are likely not prepared to accommodate your needs. This means that you may spend a lot of time and effort figuring out accommodations that will work for you. If you have a personal FM system, you can put it at the podium, but you will miss the questions. If you sit up front to hear the speaker, you will need to turn around to speech-read the discussion contributors. If you are able to have CART (real time captioning) or interpreters, they might quickly become lost in the technical language and variety of accents at an international conference of specialists. If you bring your own sign languages interpreters who are familiar with your expertise, you can reduce this problem; but interpreter lag can impede participating in fast-paced discussions. No matter what strategies you use, let’s face it, you are working twice as hard just to understand the material as your hearing neighbor and you aren’t going to get 100% of the information.
A high stakes conference with non-ideal lecture and discussion format can be a major career challenge for deaf/HoH academics!
You want people at specialty conferences to know that you know your stuff and have good ideas. If you can’t do this by contributing to the group discussion at these high stakes conferences, can you be successful in your field? I think so and I will share some the approaches that have worked for me (full professor, moderate-profound loss, good speech reading skills).
I almost never speak up in the discussions. The high probability of me asking a question that everyone knows the answer to because they heard the issue discussed seems too risky. While I admire folks who can say “Maybe this was explained and I didn’t catch it, but (insert question)” I haven’t been able to do this at high-stakes conferences. My fear is that my colleagues will think that I wasn’t paying attention and dozed off when the topic was discussed. The truth is that even using 120% of my ‘attention’, I’m going to miss a lot of the discussion – but hearing people don’t often understand that so they may presume I was lazily dozing off.
The good news is that a lot of the networking at these conferences happens outside of the auditorium. We deaf/HoH can get our networking game going during meals, poster sessions, the food/beverage line, walking around the venue etc. Sometimes, I seek people out for research conversations with pre-planned questions to help launch the discussion. These informal settings are not without challenges (subjects of other blog posts!) but you have more control over these settings. For example, you can suggest moving a small group discussion outside of the noisy poster hall, your requests for clarification are more acceptable in small groups and you may have an opportunity to educate folks on the challenges of your deafness. While, your hearing peers will make clever comments in the formal group discussion and immediately earn the admiration of the big-shots, you can capture their attention through multiple small or one-on-one thoughtful discussions. It takes a bit longer this way, for sure. What I’ve found is that those one-on-one discussions provide rich foundation for long-standing collaborations and friendships. For me, this has been the most rewarding aspect of high-stakes conferences.
Note: This blog was drafted at a high-stakes Gordon conference on Rock Deformation during a talk that was utterly indecipherable to me. Writing this, instead of struggling with the talk, was my way of saving my energy for coffee break discussions where my game will be on. I got this!