Transcript — Deaf in science: beyond the range of hearing

This is a transcript of a documentary feature that aired on Quirks & Quarks on Dec. 4, 2021.  

Note: Transcripts may contain errors. If you wish to re-use all, or part of, a transcript, please contact CBC for permission. Please check the corresponding audio before quoting in print. Copyright © CBC 2021

[Lorne Farovitch] I'm an epidemiologist, and I work as a COVID data analyst at the New York City Department of Health. 

[Bob McDonald] This is Lorne Farovitch.

[LF] And before I introduce myself, I would just like to clarify what the context looks like for us. I am deaf and I'm an ASL user for communication, and I currently have an ASL interpreter with me, and her voice is feminine, but I am a man. 

[BM] Lorne Farovitch is not alone as a deaf scientist, or as a user of American Sign Language, the signed language used by many people in the deaf community in North America.  But he's rarer than he should be.

Historically there have been many important deaf scientists.  Famously the great American inventor Thomas Edison was largely deaf from childhood.  Which of course is ironic given that one of his most famous inventions was the phonograph. In fact here's Edison in a recreation of his first sound recording from 1877

[Thomas Edison] Mary had a little lamb, its fleece was white as snow. And everywhere that Mary went, the Lamb was sure to go.

[BM] But beyond Edison, accomplished deaf scientists include 18th century naturalist Charles Bonnet who was deaf, discovered parthenogenesis — or reproduction without fertilization — in aphids. 

Or astronomer Annie Jump Cannon who in the late 19th century developed the modern system for classifying stars.

Or organic chemist Sir John Cornforth, who was deaf from childhood, who in 1975 won the Nobel prize for his work on cholesterol.

Yet still today deaf  people are underrepresented in STEM, or Science, technology, Engineering and Medicine.

Producer Moira Donovan brings us this documentary, Deaf in Science: Beyond the Range of Hearing.

(splashing, mud sounds)

[Moira Donovan] It's a rainy September day in a scrubby patch of forest in Nova Scotia

[Linda Campbell] There's some beard lichen there on that tree. Yes and we can't find plasmadia. Oh yes, there's a bit here. There we go...

[MD] Saint Mary's University professor Linda Campbell, is squelching through mud, with her masters student Michael Smith.

They're investigating the release of pollutants at this site, which was once a gold mining operation.  They're searching for lichens, which can act as monitors for toxins. 

Smith and Campbell describe today's work.

[Michael Smith] So I've been looking kind of at dust and air quality. So we use lichens to look at the air quality, and lichens -- they accumulate elements from the atmosphere rather than from roots. So that's why they're good to look at the air quality

[LC] And if I can just add to that as well. There are some historical documents that have showed stamp mills and mercury amalgamations sites and they were located right here where we are.    What took place 100 years ago is still being reflected in the lichen.

[MD] Campbell is a freshwater ecologist, and studies the way environmental contaminants move through ecosystems.  At this site gold mining a hundred years ago has left dangerous levels of arsenic and mercury that is moving into the soil, water and air. 

[LC] And so basically, my research is about how human activities are disrupting our ecosystems, and how to solve those issues.

[MD] Campbell is one of a handful of experts in Canada who can offer insight on the way toxins can affect ecosystems.

But she's also in the minority in another way. 

Campbell is deaf, and uses American Sign Language. She's one of the few deaf university professors in STEM in Canada. 

The voice you heard is that of her interpreter. 

And Campbell's faced barriers that have nothing to do with deafness, and everything to do with the limitations of a hearing-centric world.

[LC] When science looks at that as an added cost, and added labour, to include people with disabilities, and deafness, they're not recognizing the differences and the successes that can be brought -- that diverse thinking can be successful. And so it is very important to work on that, absolutely. The attitudinal barriers, those are significant to — of all of the other barriers, attitudinal barriers is the top, top barrier that I face.

[MD] Due to those barriers, deaf people are underrepresented in STEM fields. A report from earlier this year by the Royal Society in the UK, for instance, noted that while about one percent of the population is deaf, the percentage of STEM undergraduates in that country who are deaf has stagnated at just 0.3 percent for the past decade. 

In Canada, there is little formal data about the proportion of STEM faculty and students that are deaf, but it's pretty clear there are fewer opportunities in STEM programs here too. 

[music]

[MD] That's a problem. Because universities should be places where these sorts of barriers are challenged. 

[Alex Lu] I am Alex and I am a recent PhD graduate from the computer science department in the University of Toronto. So, well, what do you want to know?

[MD] Alex Lu is deaf - he uses sign language and lip reading, as well as his own voice, which you're hearing now. 

Growing up, he says he always felt comfortable as a deaf person — but it was hard to reconcile that with what the outside world was telling him. 

[AL] Basically like the way that I've always perceived myself is that I'm just someone whose experiences are mine. And for some reason, I just don't seem to fit into or belong in this world that seemed to have a different idea of what the default person or default body should look like, and everything is designed around them, and not me. So I think that that informs some of the barriers that I encountered in science.

[MD] What kind of barriers did Lu encounter in his studies? Well, he worked on artificial intelligence for his PhD. 

But while he was pursuing that work, Lu says he'd often run up against people who were used to teaching and learning science in a certain way, and doubted that it could be done differently. 

It started with issues around using ASL - sign language...

[AL] Like, for example, like, I think I'm the first deaf person in my program. So there was a whole bunch of like, confusion about like, how do you get ASL interpreters and like, how do they work in classes,  like there were a lot of professors that had never interacted with an ASL interpreter, or a student that uses an ASL interpreter in their entire life and everything, right?

[MD] This is an issue with a long history.  In fact, from the late 19th century to the early 1960s, sign language was forbidden in many Canadian classrooms, as people believed it prevented deaf children from learning speech. 

And the resistance to ASL is just the start, Lu says. 

[AL] And then when you start looking into that, you start realizing well here are all of the barriers in the way that we've been educating deaf people.

One result of those historical barriers is the tiny number of deaf researchers in Academia.  Linda Campbell is one …

[LC] Well, let me go through my list.

[MD] … and she can count the number of other deaf professors she's aware of in ANY subject on one hand.

[LC] We have Joanne Weber, Kristen Snoddon, Véro Leduc in Quebec, we have a new professor which is great at the University of Western Ontario, Jenelle, which is wonderful, and we have Kathryn Woodcock and myself, and yes, I think of all those, yes, there's just two in the science fields

[MD] Even worldwide, there are very few deaf scientists within any given scientific field — like Campbell's specialty, freshwater ecology. 

And that's led to some significant issues beyond just under-representation. 

It's also led to a communication issue for deaf people in science.

The technical and specialized language used in science, hasn't necessarily made its way into signed languages such as American Sign Language.

But efforts are underway to fix that. 

[Colin Lualdi] I'm Colin Lualdi. I'm a fourth year PhD student studying physics at the University of Illinois in Urbana Champaign. My research is photonic quantum information. And I use American Sign Language as my primary language.

[MD] Lualdi also uses an interpreter, who's voice you're hearing.

And to get a sense of why the lack of technical language in sign languages has presented challenges, look no further than this bite-sized summary of his research. 

[CL] We're looking at small scale things, for example, atoms. And we're trying to figure out how we can best encode our information within these systems in order to perform some new technologies. One possible system for this quantum information is photonics, which measures, or which studies the smallest unit of light. So right now we have light bulbs ahead of me that are shooting out billions of photons. My job is to isolate one of those photons, and play with that in order to encode quantum information

[MD] Sounds complicated, right? Imagine how much harder it would be to understand if we were missing some of the words Lualdi just used. 

That's the kind of communication barrier Lualdi ran into when he started delving into physics in his undergrad. 

[CL] One day, something happened that was pretty fascinating. I learned about a concept called degeneracy.  You know, in common English and layperson's English, when you think of degeneracy, you think of something degrading, becoming worse over time, right? But as I progressed in my studies, I realized that degeneracy is a completely different word in physics. It has nothing to do with degrading over time. And by that time, I realized we needed a new sign for it in order to support the concepts that were being communicated. 

[MD] Sign language just didn't have signs for some of the technical concepts that were used in physics.  

To help fix that, Lualdi has joined a collaboration between Harvard University and the Learning Centre for the deaf to create new signs for physics concepts.

It requires some careful thought, because sign choices can influence the concept they are meant to communicate.

For example, the sign for electron: Lualdi balls one hand into a fist. Next to it, he circles the other hand, with the fingers closed.

[CL] So the fist is the nucleus,  represents the nucleus; we have something going around that nucleus, and that implies electron, right? That makes sense.  But I have deaf physicist friends who agree with me and feel it's not necessarily the best sign because it implies that you have an electron always circling a nucleus, right? But that's not always true. We can have free electrons, for example, when an electron has no nucleus that it's spinning around. So my deaf physicist friend and I, we use the sign for this for electron.

[MD] Lualdi removes the closed fist, and just moves the hand with the extended index finger in a circle. 

[CL] We don't have the nucleus in there. We just have our index finger. And we're still in the process of trying to spread this sign in order to get feedback to see if it's going to be adopted, or if we fail to change the sign for electron, we'll see.

[MD] This isn't just beneficial for communicating with hearing people—Lualdi says it's made communicating with other deaf physicists more fluid, as well. 

(music)

And outside of physics labs and classrooms, being deaf in science poses different sets of challenges and opportunities.

Take for example biological field work - getting out in the natural world to understand it better.  That's what Barbara Spiecker loved about her graduate studies in marine biology.

[Barbara Spiecker] The moment I realized I wanted to be a field scientist, was when I did a lot of lab work and studying genetics, in brittle stars. And at that time, I felt stuck. We were stuck in a lab, seeing the same four walls every day, I'm an outdoor sort of person, so once we started doing dives, and things like that, I really enjoyed that being able to see what is actually out there and see all of the different shapes and patterns and all the different animals and things that are related among these species. 

[MD] Spiecker is also deaf, and uses ASL. Again you're hearing the voice of her interpreter here.  

[BS] I'm currently a postdoc working at the University of California in Santa Barbara. Looking at researching marine protected areas where people can't fish or touch those animals.

[MD] Field science is founded on observation.  And as a deaf person, Spiecker says she observes things differently from hearing peers. 

[BS] It's very 3D based, a lot of what I do, and ASL is a 3D language. So often hearing people, when they research, have a different frame of how they see and interpret the world, and what they research. So that's what I bring to the table, in that sense.

[MD] Spiecker says this three-dimensional way of viewing the world has also encouraged her to a bigger view.  Rather than looking at individual species, she's looking at the interactions between species. 

It's a different perspective, and different perspectives can be very valuable in science.

But being deaf hasn't always been seen as a strength.

[BS] I remember when I started my PhD. My first two years, I did not have a sign language interpreter, and I don't speak audibly myself, I sign. So for the first two years in fieldwork, it was a bit of a challenge, lack of communication, and doing a lot of writing back and forth, gesturing and whatnot with everyone.  It was really tough, I missed out on a lot of learning opportunities. But when I had my internship, there was another deaf student from France who actually had come over and did an internship with me. It was my first time experiencing doing fieldwork with another deaf person, and to be able to see the big difference between me being with a group of hearing people and me having access to a deaf person in those environments. It was just easy to communicate, obviously. 

[MD] And she also discovered that whether underwater, or on the slippery seaweed carpet of the intertidal zone, using visual communication was often an asset. 

[BS] And for the rocky intertidal system, or scuba diving or anything like that, we do have some distance between us and the other people. So signing is really nice. Hearing people have to come closer to hear each other because it's loud and underwater, you obviously can't talk, and we had a lot of other options. 

[MD] But attitudinal barriers from hearing people were another matter. 

[BS] When I started my PhD program, my advisor, one of the first who I'd met said, 'how can you be safe in the water? What if you can't hear a wave coming at you that's big,' and I'm like, 'there's really no difference, you probably aren't relying on your hearing at that point, either.' My eyes are very vigilant in these situations. So often, I notice things, I guess more than other people would, I mean, it's just natural for one sense to be amplified when another is gone. It just took a little education and explanation, to realize there's really no difference. 

[MD] For Alex Lu, there IS a difference, though. And that difference has its own unique value. And that means removing barriers to deaf scientists expands what STEM can achieve.

[AL] My perception is the value of having disabled people in science, and marginalized people in science isn't that you just want to get people who are uniformly going to be superheroes or anything like that. Even if you look at the average disabled person, we contribute perspectives that are different from the other mainstream science just because we come from a different body of experiences, right? 

[MD] Again, science is strengthened by bringing in more diverse perspectives.

LIke the kind of perspective that Linda Campbell brings to that polluted mine site in Nova Scotia...

[MD] Can I ask, is this sort of like oily residue that we see around also consequences of the gold mining?

[LS] It's actually very interesting. It's a type of bacteria that metabolizes arsenic. And it's very, very tolerant of high arsenic concentration environments, and so if you see that shimmer….

[MD] … where it's clear that diverse perspectives are needed more than ever.

[LS] We're building a — many lines of evidence for the research and the potential risks of the tailings and how to manage those risks. And we've done some really exciting work and successful work and more coming down the road as well.

[MD] For Campbell, providing the full breadth of viewpoints means reminding people what deaf scientists bring to the table.

[LC] Science requires creative thinking, being very skilled at problem solving, and the ability to see different roles, working together to solve a common problem. And when you lose people that have disabilities, those who are deaf, and there's a barrier placed to them, then you're losing that whole group of people who have such intense, powerful skills that can advance the field of science, but they're not there. And so yes, it is a big problem. Absolutely. 

[MD] But it also means remembering how many people are still waiting for an opportunity to take their seat.

[LC] The fact that it's the five of us, who are very successful in our chosen careers, doesn't necessarily mean that that problem is now solved. There are many, many more people that could be successful and could contribute to science and make the planet a more healthy place. But they just can't, because of those very barriers imposed on them. We can be used as a role model, Absolutely. But not as an example: 'Oh, if you … if they can do it, you can do it'. That's not it. But it's more that 'they could do it, so we can find a way for you to do it, too.'

[MD] For Quirks and Quarks, I'm Moira Donovan.