In honor of Disability Pride Month, this week’s episode examines personal triumphs and societal challenges of being a person with disabilities in STEM.
Part 1: As a deaf person, Alma Schrage doesn’t see a place for herself in the traditional academic world of science.
Alma Schrage is a bee biologist currently involved in conservation research for the endangered rusty-patched bumblebee. Deaf since birth, Alma uses American Sign Language and English. She often uses her finely honed lipreading and guessing skills to understand the sign-impaired and supports early sign language access for deaf and hard of hearing children of hearing parents. Alma often talks like a book because that’s where she learned most of her English. Her hearing aids are great for discrete Bluetooth music streaming at inaccessible conferences.
Part 2: After a fall leaves Jennifer Piatek paralyzed, she must rethink how she defines herself as a scientist.
Jennifer L. Piatek is a planetary scientist who studies impact craters on Mars, a college professor teaching geology and astronomy courses, and in general someone who is just trying to navigate the world from a wheelchair.
These two stories have been adapted from the book Uncharted: How Scientists Navigate Their Own Health, Research, and Experiences of Bias, for the podcast.
Episode Transcript
Part 1
When I attend my first ornithology conference in undergrad, I'm excited. I want to be able to do something meaningful, something I enjoy, obviously, but also contribute to broader ecosystem and human flourishing, something that I can be proud of doing and is interesting to me on an aesthetic level.
My love for science is very much a love for beauty, the patterns of how organisms interact to make complex ecosystems. But as a deaf student and a mainstream here in university, I feel I have so much to prove. That I'm smart, that I'm not a safety liability in the field, or a burden to the people I work with.
With all of that weighing down, I'm too scared to ask for accommodation for my first conference as an undergraduate. So for every presentation, I'm sitting in the front row. As the day inches on, the back of my neck winds tighter and tighter, and I lean forward slightly, eyes glued on the speaker.
Speech reading isn't magic. In a quiet room, I can recognize maybe 4‑12% of the words with my hearing aids. Another 30‑40% I can perhaps lipread. And the majority, I guess based on context and my knowledge of the topic and the speaker.
After a couple of hours playing this high‑speed crosswords, my brain starts to fry. Add additional speakers, background noise, bad lighting, and I understand nothing. By the end of each day, I'm so physically and mentally exhausted from trying to follow the conversation that I hide in a bathroom stall and cry.
After the conference ends, I can't read or look at a screen because of the throbbing eye strain from lipreading for 8 hours a day, for three days. I'm so drained that I have no questions, no thoughts, no wonder, no questions about other people's bird research or ideas about bird song research that I'm studying, or the satisfaction of seeing data come together to tell a story.
The joy I feel doing research is gone. All I feel is a gray exhaustion that covers everything.
For my last conference as an undergraduate, this time, I muster the courage to ask my research advisor for accommodations, the same ones I get for school: CART captioning. Despite the fact that it's illegal for conferences to not provide these accommodations in the US because of the Americans with Disabilities Act, the conference doesn't plan for accommodation and, instead, tells her that it's too expensive.
When she relays this to me, I smile and say I'll manage, because I'm afraid to cause trouble. But at the same time, it's a door shutting on my face. I'm not wanted here.
I give my presentation and then attend only one session in the whole conference. I know by now I won't get any useful information from staying so I spend most of the conference outside, hiking on my own.
But during a networking event, my research advisor introduces me to an older researcher to talk one‑on‑one. He asked me what my plans are after graduating. I reply honestly that I want to get field research experience since I don't have any.
He laughs and tells me that fieldwork is not a career.
I smile and I don't say anything. He wanders off to talk to someone else.
How do I explain to him that I don't see a career here? I walk through the room, watching but with no way to understand and enter the noisy conversation. No one approaches me and it's impossible for me to break into a conversation that's flowing at full speed between people I don't know.
So much of my lipreading is reliant on contextual information about the conversation and the person speaking. So with strangers, there needs to be a reciprocal awareness, an effort to communicate, a desire to connect, which I don't see.
Watching these conversations from the outside, I realize I would be miserable in academia. I have to find some other way into biology and to research.
It's eight months later. I've graduated college and have landed my first field biology job, a short gig that runs for three months in the Sierra Nevada mountains, collecting data on post‑fire habitat use of songbirds and bumblebees. It's also 3:00 AM in the morning.
I climb into the driver's seat and we're off into the dark on a road that climbs up into the mountain. The crew lead and I have already checked and double‑checked and triple‑checked that we have everything: GPS, radio, batteries, and all the gear for the bee surveys we must do after the morning bird work is done.
I pack one more item, a pocket‑sized WAV format recorder with omni‑directional microphones.
I'm driving, and around 4:30 AM we turn off the road onto a rougher one. I'm weaving the truck between the foot‑deep rock and boulders as they loom up in the dark. At the same time, trying not to slow down too much since we need to reach our first survey point before sunrise.
It's close to 5:00 AM when I pull over and park. The crew lead and I hurry through the dense chaparral to hit the first point count location where the first survey of the day must happen half an hour before the sun rises.
We get to the point as the sky starts to lighten. We pause, catch our breath and let the birds forget the sound of our passage.
I step over a few fallen logs and lodge my recorder into an upright snag, microphones angled up and outward to catch the sounds of the birds singing on the trees. I hit Record and then step back to where the crew lead is and take out my clipboard with the data form.
I begin the vegetation assessment, filling out the form on my clipboard as I look around and check distances through my range finder. Out of the corner of my eye, I can see the crew lead noting down bird species on his clipboard as he identifies the individual birds calling and singing.
A minute later, I finish the vegetation survey. I pull out my smartphone and I am listening too, not by sound but by sight, through the oscillating lines of a spectrogram running on my phone screen. This maps the arc and trill of bird song in a language that I can read. I note the sloping vertical bars of the Orange‑crowned Warbler, the slower, more level vertical bars of a Wilson's Warbler, and the bold, low brushstrokes of a Black‑headed Grosbeak singing.
I see other songs. The buzzy, chicken‑scratch notes of a Cassin's Finch, and a treat, a Canyon Wren, a long sequence of crisp tilde signs that signify clear whistling notes.
I see another that I don't recognize. I snap a screenshot for reference. A minute later, I see two brief notes that look strangely precise, inorganic, and I know that time is up; that's the beeps of the crew lead’s stopwatch.
I hop over the logs and grab my recorder, hit the stop button. I tuck it into my pocket as I step back and quietly list off the species that I recognized. The crew lead nods and add a couple that I didn't identify.
I think back to the song I didn't recognize and translate the visual characteristics I saw, describing it with sound adjectives that I know hearing people recognize, such as clear, buzzy, single note, multiple note, rising trill, etc.
He nods in recognition, assigning it to one of the species I missed. The other might have been too far for my phone to pick up. Maybe I'll have a chance to see it at the next survey point.
Through the morning, we slowly work our way up the drainage. At each survey point, I repeat the same process. Complete the vegetation survey, listen, then quietly confirm. And in this way, I learn the sounds of different birds and get better with practice.
It is not perfect. My phone does not have the same level of sensitivity as some human ears do, and I cannot pick out the sounds the crew lead hears beyond 80 meters. Much later, when I describe these failings to another biologist who does point counts occasionally, she reminds me that even most hearing people are not very good at point counting, and she tells me to be less self‑critical. It still feels like failing, though.
Most people react to my bird‑listening practice like a one‑hit wonder. They marvel, but they treat it as an absolute quantity. If I get an identification wrong, I get a pitying look. And if I get it right, it's because I'm exceptional. There's no room for me to make mistakes, to learn.
It's rare for other birders to concretely engage with what I'm doing, but the crew lead does. He doesn't spend any time marveling at what I'm doing, or the strangeness. He installs the same spectrogram app on his phone and we argue and compare notes. And every time it's my turn to get up before dawn to help with point count, I learn more sounds.
And that's just the first six hours of my day, before I move on to bumblebee surveys. A blessing of bee surveys is that bumblebees generally do not give a damn if you are bumbling about making noise, so long as you are not in their immediate vicinity.
The Sierra Nevada is bear country, and field biologists learn one cardinal rule. Make noise. It warns the bears of your presence and gives them time to move away. Prey animals are not noisy. They move quietly to escape detection. But bears and other strong or dangerous animals do the opposite. They make noise. So the way you move through the world conveys what you are. Be quiet and move cautiously and you are prey. Be loud and you are an animal that does not need to hide to survive.
Growing up in a hearing world, you have to learn to be constantly aware of your voice without necessarily hearing it. I always had to think about the noises I made, to contain my voice with just the right amount of volume, tone, enunciation. To sound deaf, regardless of intelligibility, was again and again driven home as something to hide.
The message was, “Be smaller. Be quieter. Be palatable to other people. Don't scare them with your strangeness.”
So I love being in bear country where it's safer to be loud. I stop thinking and I become myself, noisy, free. When I move, the world talks back. Logs creak, twigs snap, leaves crackle. The whitethorn rustles and scrapes as I push through it. Some of the long thorns poke through my shirt and pants and break my skin, but it doesn't bother me. I move through the world like a bear.
My hearing coworkers have a harder time of it because they hear, they walk quietly without thinking. And all of them have a moment during the summer when a bear comes a little too close, seems a little too interested. And they have to wave and shout and nervously wait for the bear to leave.
And I learn that outside is the place that I can always return to. On the human front, I'm rooting for the underdogs in science. They are often the people who see me and reciprocate, whose desire to connect and belong is as strong as my own. And all summer long, I crash across the mountainside. The bears leave me alone and the bees don't give a damn.
Part 2
I fell in love with planetary geology a little bit late. To be honest, I was the horse‑crazy girl who wanted to be a veterinarian until the day my high school physics teacher talked about sending humans to Mars, and suddenly I was hooked.
My college astronomy courses skipped the solar system, so instead I found a summer job working with a geology professor who studied asteroids. It wasn't quite Mars, but I happily spent late nights graphing telescope data, fascinated by the idea that we could figure out what distant asteroids were made of using only light.
And I found out who I really wanted to be, so I dreamed about being an interplanetary astronaut. And until I could go on those trips myself, I wanted to be the person who used light to unravel the mysteries of Mars. I found a part of my identity.
That identity meant packing up and leaving the small, New England town where I grew up for graduate school, west across the United States, and then back east again, but I had a goal. If that meant hiking up a cinder cone or stumbling across a rocky lava flow, no matter how difficult, I would do it because that's what I thought a real geologist would do.
Still, I felt I wasn't a real scientist yet. I was still a student or a postdoc that reported to an advisor. But perhaps maybe as a professor, I would feel that I was more of a success.
So with a little bit of luck, I found a position for a planetary scientist at a small university that is less than an hour's drive from where I grew up. Small university means more teaching, so I had to be a little creative and worked to fit in the science around my class prep and grading.
I like teaching, though, so it seemed like a good compromise. Although I'm the only planetary scientist in my institution, so I had to make a little extra time to travel to a couple scientific conferences each year so I could network with other planetary scientists with similar interests and talk about our current research.
I found small grants so that I could join these colleagues on field trips and explore the desert in Chile or the mountains of Montana or Utah and compare them to the landscapes we find on Mars.
I was planning to someday, though, have my own field project that I could talk about at the science conferences, then I thought, “Then I would really be able to say I was a planetary geologist.”
So at the end of my third year as an assistant professor, I went to an early career workshop, which is the kind of thing where pre‑tenure scientists like me sit around listening to presentations by more senior academics and we ponder in discussions and gallery walks about how we could be successful and happy in our academic careers. One of the staples of these workshops is the discussion of a healthy work‑life balance and the importance of taking time for yourself.
As I land back at my home airport from the workshop, the weather forecast says sunny with a few clouds, and it seems only appropriate that instead of driving home from the airport to deal with the mail and the laundry, I would take some time for myself. It was a lovely June afternoon, so I thought I should spend the afternoon riding my horse Jack.
Jack's a dark brown color that seems almost black, so he's, in essence, the black stallion of my childhood daydreams. He responds to my greetings of, “Hey, handsome,” with a nuzzle, and he lets me lean into his shoulder and give him a big hug, although sometimes I think that has to do more with the handful of mints in my pocket.
Our day starts out like so many other afternoons at the barn. We go through our grooming routine with lots of mints and pets and hugs, and then we go down to the arena.
After I get on and we walk around a bit and get kind of settled with each other, we go off and trot and canter around as a warm up. I'm just enjoying the afternoon. There's just enough of a cool breeze that it isn't too hot.
And after trotting and cantering for a bit, I think, okay, it's time for a walk break. But before we do that, I thought it might be fun to hop over this enticing new, little, white‑gate fence that's in the middle of the arena.
So we trot up to it and get over in a bound, but after we land, something happens. There's a stumble or a buck and I go over Jack's shoulder and land on my back, in the sand, hard.
I've fallen like this before, so, as I'm falling, I expect the impact should hurt. But it doesn't this time. I'm only numb after I land. I realize I can no longer feel or move my legs at this point.
After a few minutes, it starts to feel again and it feels like I'm lying on a rock that's poking between my shoulder blades.
Think about the opportunities to expand the broader impact statement on your next grant is not exactly the kind of thought I expect to be racing through my mind as I'm lying in the sand unable to feel my legs, waiting long minutes for EMTs to arrive.
While I'm lying in the sand, my thoughts aren't about the lack of feeling in my legs, but more about how am I going to continue to do my science? How am I going to teach? How can I do fieldwork if I can't walk?
It was that moment where my science brain takes over and it realizes that the thinking about the negatives, the fear and anxiety and the realization of suddenly being disabled, that this would be a downward spiral into the abyss. Instead, my science brain focuses on the scientist identity that was so important and starts thinking logically about how I can retain that identity on what might now be a new challenging path.
But the important thing for me turns out to be my identity as a scientist. All the EMTs, nurses and doctors who took care of me were told that I taught geology and astronomy when they asked my name and what I did. No doubt part of the protocol for assessing head injuries. And since I always rode with a helmet, fortunately I did not have.
I gave a book of recommendation about local geology to the doctor that showed me the MRI that confirmed my injury. There was never an aha moment where I realized what this meant, but always the sense that in order to continue being me, I needed my science.
So I found out in the hospital the next morning that the force of the impact had caused a burst fracture of my vertebrae and severed my spinal cord completely. I should have been devastated, but I knew at that moment that despair would be a hard path to return from. So instead, during the weeks I spent in a rehab hospital, I focused on what I could do.
A goals list affixed to the bulletin board in my room centered on keeping the identity I had crafted. Going back to teaching was at the top of that list. Figuring out how to navigate travel to conferences, planning activities with friends underneath, and a comic celebrating the Spirit Mars rover decorated the bottom.
I was fortunate in many ways that I chose the path I did. The bulk of my research is working with computers and satellite images, not out in the field. And although grad school and a postdoc had taken me across the country and back again, my current university where I work is less than an hour drive from where I grew up and where most of my family lives. The rehab hospital where I spent the rest of the summer after my accident is essentially just up the road from campus.
That doesn't mean, though, that somehow life would be the same or that I would be the same person I was before my accident, just now a person in a wheelchair. There were a lot of new barriers to me now in a wheelchair that I had never considered.
Just a simple one, the restroom labeled Handicapped in my building has a door that's much too heavy for me to open, and my wheelchair doesn't fit anyway.
I expected that I would have trouble writing on the whiteboard in a classroom from a wheelchair, so I thought, “Oh, I'll just use more computer‑projected slides.” It didn't occur to me that I might have to log in to a computer that has a keyboard that's over my head, because the lectern is set up for a person who's five to six‑feet tall, not someone who can duck under the three‑foot barrier in the parking garage.
Many of our labs have tall benches that are difficult or impossible to reach from a seated position or are so close together that there's barely enough room to pass a wheelchair.
I've always been someone who prefers hard over easy, so at first, these challenges feel like opportunities. I can grab little victories by figuring out the best way to overcome these challenges and feel like I'm mocking the universe to put those barriers in my way.
Eventually, though, the challenges become tiring rather than invigorating. I love being the only planetary scientist in my university, the only fish in a small pond, if you will, but I feel like I have to give up my independence every time I ask for help.
I remember being taught in our geology courses not to rely on someone else for help identifying rocks or locating yourself on a map, so I always felt the expectation that I needed to be able to do it myself.
Hike up a volcano, deliver a lecture on the rocks, jet off to multiple scientific conferences, plan future projects with colleagues, and, suddenly, I'm no longer planning my dream research trips to remote field locations to compare to Mars. Now, I have to ask for help just to set up and break down my labs or to carefully plan trips, so that I know exactly where I will stay and if there's a way for me to get around.
Sometimes, I worry that I'm no longer seen as a real geologist because my work is more focused on computer analysis of satellite images now rather than hiking out to distant outcrops and banging on rocks and taking compass measurements, as if I could do that on Mars anyway.
I hate to ask for help, but it's more important that I make sure, say, that we do the impact crater lab in my astronomy class. So I get over it. I get over the discomfort of asking students to take the sand trays and set them up, because I love to see them make impact craters using slingshots.
I loathe the hassle of traveling, particularly the part where I have to be carted on and off an airplane in an aisle chair. But I don't want to miss out on the excitement of a scientific conference or the chance to explore a new field site. It just takes more planning now.
So my teaching is more intentional. I think more about what I write on the board since I can't write as much. I'm more picky about the conferences that I attend because they need to be in accessible locations. And I always try to get out into the field, not just to prove to everyone else that I can still do the things that a real geologist does, but so I can prove it to myself too.
And I found a community of people with similar experiences that I can rely on, just to listen or to give me a push when the path gets just a little bit too steep.
So there are things we each can't do and things we can, but maybe they don't define us. Maybe they do, maybe they don't. I can't navigate stairs, at least safely. I cannot fit my wheelchair through a narrow door and I cannot board a plane without assistance from the ground crew, but I can still stare at spacecraft images of Mars in awe. I can write code to help interpret those images, share my passion for planetary geology with my students, cheer for my favorite hockey team, sing along with the angry music on my get‑to‑work playlist, as long as no one else is listening.
In the end, the important thing for me is that I am, I still am, and I will continue to be a planetary scientist.