People with disabilities are underrepresented in STEM fields, and all too often, they face isolation and ableism in academia. In this week’s episode, two stories from the recently published book Uncharted: How Scientists Navigate Their Own Health, Research, and Experiences of Bias, have been adapted for the podcast. Both of our storytellers showcase how they, as scientists with disabilities, navigate their careers.
Part 1: When Skylar Bayer’s heart condition sidelines her from doing her dive research, she struggles with not feeling worthy enough as a scientist.
Skylar Bayer is a marine biologist, a storyteller, and a science communicator. She completed her Ph.D. in the secret sex lives of scallops, a subject that landed her on The Colbert Report in 2013. Since then she has dabbled in a diversity of science communication activities, all of which you can read about on her website (skylarbayer.wordpress.com). She’s an alum of the D.C.-based Sea Grant Knauss Marine Policy Fellowship program. She is the co-editor with fellow MIT alum, Gabi Serrato Marks, of the book Uncharted: how scientists navigate health, research, and bias. When there isn’t a pandemic going on, she also enjoys Brazilian Jiu Jitsu, the gentle art. Follow her on Twitter @drsrbayer.
This story was originally produced by SoundBites and aired on Maine Public Radio in 2019.
Part 2: When Mpho Kgoadi loses feelings in his legs as a child, he worries he won’t be able to achieve his dreams.
Mpho Kgoadi is a PhD student at the University of the Witwatersrand in South Africa. He has a rare auto-immune disease called Transverse Myelitis and has been using a wheelchair for the past 15 years. He has always been fascinated by the mysteries of the cosmos, and his research focuses on the effect of dark matter in the early universe. Outside of his research, he is passionate about science outreach and making scientific knowledge accessible to people from diverse backgrounds, he loves coding and have a deep passion for tech. In his free time, he enjoys stargazing, reading science fiction novels, and playing video games.
Purchase a copy of Uncharted and read more powerful first-person stories by current and former scientists with disabilities or chronic conditions. Books can be purchased here: uncharted.ck.page
Listen to an exclusive interview with Uncharted co-editors Skylar Bayer and Gabi Serrato Marks here: https://www.patreon.com/thestorycollider
Episode Transcript
Part 1
I can see the coast of Maine, rugged and rocky, split between peninsulas and islands. And sometimes when I look out, I can't tell if I'm looking towards the shore or just another island. There are swatches of orange and yellow in the distance as fall is setting in and it feels like a black and white filter tinted a dark blue, like an old film has been overlaid on the colors of summer.
It's October and it's cold. And I am sitting in a boat by myself in the middle of the ocean. I have a bright red sailing jacket on with a neon yellow hood. Supposedly if I fall in the ocean, you can see my head bobbing in the thousand square miles of dark blue ocean.
In the boat, it's a center console, steering wheel in front. There are containers for lobsters that we're collecting. There's a bucket full of rope. There's an oxygen kit, life preservers, scuba diving tanks. And, about 30 feet away from me, there are four of my lab mates, including my advisor wrapped in black neoprene in 40 degree water looking for lobsters. I can see their bubbles rising to the surface.
But I'm sitting in the boat alone, wrapped with my hood up and I'm staring down at my brown waterproof boots. My toes are cold. I can feel the ocean bobbing the boat and I can hear the waves lapping against the side. And I have this deep nagging feeling of not being good enough, of not being worthy enough, of not being strong enough.
I look out again at the bubbles coming up from the surface from my lab mates and I think about how the ocean it looks more like a glass floor than a glass ceiling. I longed to dive in to be with them.
The reason why I'm stuck alone in this boat is that, after six months of training and scuba diving when I started my PhD, I got really sick and I got diagnosed with a heart condition after a week of awful testing. I have an arrhythmia.
The American Academy of Underwater Sciences does not allow you to scuba dive or be a scientific diver with a condition like mine, nor the defibrillator device that was surgically placed inside me.
And so after hours of weeping when I got my diagnosis, I had felt like the whole purpose of why I had moved to Maine and changed part of my science career to become a scuba diver, to make that my life's choice, I felt like it had been cut out of me with a rusty serrated edge, leaving this gaping wound in my ego.
One of my committee members had said, he's like, “This is a good opportunity. The best summer I ever had as a graduate student was when I was sick and I couldn't snorkel.” He had a snorkeling project. “So, I got a lot of work done because I was the director of the data and I could organize and I could think because I wasn't snorkeling all the time.”
And then there was the marine safety officer at our station. He had been in the Navy for 25 years. He's like, “No, I think it's so stupid how the guys who know the most in the lab, the head scientists are the ones swimming down below while they leave the dumb intern in the boat. In the Navy, the most important person is up on the surface in case something goes wrong.”
And it's true. Surface support is really important. You're the first one that calls the Coast Guard. You're there to administer oxygen. You're the one that makes the decisions when someone has a heart attack, the bends or a rare shark attack.
But I worked in a dive lab and so I did those things. I planned the dive trips. I drove the boat, tried to be in charge of the data but never quite felt like enough. One time, I remember my advisor and I got into an argument where I was naive enough to think that we could do drafts of grant proposals in the 9th hour instead of the 11th hour.
During that conversation, he said, “I don't think you're grateful enough. I don't think you're thankful enough for the other students in this lab who do your dive work for you.”
It was a dive lab. All of our projects had diving and I wanted more than anything to be able to scuba dive with them, to pay them back in kind with their projects, but I couldn't. I wasn't allowed. I could drive the boat and do everything else that's required of a scientist, but scuba diving was where the work was. It's where the glory was.
And so back in this boat, I'm sitting, basically feeling sorry for myself thinking about all this. And by the way, this dive trip was not for my project because I didn't study lobsters anyway. I hear these breaths at the surface and I think they're the scuba divers, my teammates. I look up and, instead, about 10 feet away, there are three or more dark gray, slick, dog like heads with long whiskers and beady black eyes. Gray seals and they're staring at me. I'm staring at them.
We do this for a couple minutes and then all of a sudden, without a sound, they disappear.
So I, knowing seals pretty well at this point, start looking around for a boat, specifically a lobster boat. That's because seals are actually very good at taking lobsters out of lobster traps. And fishermen, some fishermen, I don't think have any reservations about shooting them on site.
So they know what a lobster boat sounds like but they don't seem to mind other boats. I started looking around and I see at the edge of this rocky island, all of a sudden, this lobster boat turns around the corner about a quarter mile away. Once they come in sight, they're heading towards me. And there's not much else that they could head towards because it's such a narrow channel between these rocky outcrops we call islands.
Once I can see the shape of two men, I wave at them. You know, “I have a dive flag. Don't run over the divers.” And they start heading right towards me.
I get kind of nervous and excited because when two strange men approach you on shore for me, I would be a little bit nervous, right? Like who are these people? But out on the water, even though you're way more vulnerable out here on this essential desert, it's kind of exciting because they're coming over to say hi. They might be checking if you're poaching and have a reasonable excuse, like you're a scientist, but they're probably coming over to do something good.
Once the guys are in view, I can see them. They're wearing flannels or t shirts and they've got ball caps on and they've got their grundins. They're waterproof overalls that are bright orange and yellow. And they're warm from hauling all day. They're not wearing their jackets. And their rock music is blaring.
And they go, “Hey.”
I go, “Hi.”
And they go, “Do you want a bucket of warm water? It's not clean or anything, but it's warm.”
And I sort of like, “Oh, they must mean like warm water for the divers for their gloves and booties when they come back from being in the cold water.”
And so I dump this five gallon bucket of rope out on the boat and hand it over to them and they fill it with this warm, steamy water. I carefully bring it over to the side of the boat and it's got bleach in it. It's been warmed by the engine. It's salt water so it's got all these dead crustaceans floating around in it.
I go, “Thanks,” and I point over to the divers. I go, “They'll really appreciate it.”
And they go, “Oh, no. It's not for them. It's for you.”
And I go, “Oh, okay,” and they take off, go look at more lobster traps.
I'm still there in that moment because they noticed me. They didn't care about the divers, which was my whole life. They cared about what was going on with me. They probably knew that the worst part of a day out on the water is just not working, just sitting there waiting to be useful again out there in the cold.
And I felt seen for the first time in a couple years out on the water, seen on this. In my mind, this two dimensional desert that wraps around the globe that's between the vast ocean below and the vast sky above can be a really lonely place.
I think for a minute and I look out at this beautiful seascape before me in the coast of Maine. Fall is just the most beautiful time of year out on the water even though it's bitterly cold. And I can hear the turns calling and the seagulls and the waves lapping, and I start to think that maybe I do belong out here on the water.
And so I take the warm bucket of water. Smells bad. And I take one brown boot, one brown waterproof boot and dip it in. And then I put the other in. And then I begin to feel a little bit warmer everywhere.
Thank you.
Part 2
I am 11 years old on my way to school. As I'm walking with my friends, I noticed that I'm falling behind. Something feels off. Something feels strange around my legs. I don't know what it is but it feels like something is holding me down and there's a strange tingly sensation around me.
My friends wonder why am I not keeping up with them and I quickly brush it off and tell them, “Ah, I'm just tired from yesterday.”
As I'm walking to school, I realized this was going to be one of those moments where I fell sick and I'm going to be bedridden for a week, and I was right.
After spending a long and boring week bedridden, I find the strength to get up and join my family for dinner. I'm happy. My life is getting back to normal. I salivate at the delicious scent of my grandmother's chicken stew. Has always been my favorite meal.
As I try to get up, I leap out of my bed and then, boom, I crumbled to the floor. I don't know what's going on. I don't know how to process this. Is it because I'm still weak from being in bed the whole week? I don't think so. Something feels strange around my legs. I cannot feel the cold sensation of the ceramic tiled floor. I'm very confused by my inability to move my legs and I'm afraid of the consequences that come with it.
A flood of emotions swell over me. I'm confused, worried, I'm scared. I know something is wrong with me but I don't know exactly what it is. As I'm trying to process all of this, I don't know whether I should cry for help or try to get up by myself. I try to get up by holding onto the bed, but I keep falling. Eventually, I call for help.
There's a dark cloud at home. I am completely paralyzed from waist down. The ____ [00:02:17] is not that I've become paralyzed but the fact that I'm the second child in this house to be struck by this case. My older brother suffered the same fate four years before I did. He collapsed at school while playing football and that happened to be the last time he kicked the ball.
Out of this whole ordeal, I was very close with my brother and we're almost inseparable. So I got to learn a lot about his changing condition. I was able to learn a few things about what it takes to be in this state, what it required to adapt physically, psychologically and emotionally.
Six months later, it's the first day of the year at school and I'm excited about going to school. The first day at school, I remember my grandmother told me that everything was going to be great and that I look as dashing as I always was. That gave me the confidence to go back to school as a different person but I felt the same inside.
My friends and my family and other schoolchildren treated me the same way as they did before and I barely noticed anything was wrong, but there was.
I had a quick six months recovery, unlike my brother. I had to go for physiotherapy, for regular checkups, consult several doctors. It had to take a lot of courage to accept what had happened. I obviously knew I had to sacrifice a lot of what I had loved to do.
But I was always an optimistic kid. Somehow I had a feeling I'd recover from this and I'd regain it at all.
As the years went by, I could feel my legs becoming heavier and heavier each year. With that, I became eagerly and more conscious about myself, about my walk and everything around that part of my life.
Before I started 12th grade, my school donated a wheelchair to me. My family couldn't afford one. They were too expensive. I remember my principal and teacher coming to my house. My principal was a very stern and scary man, as always, very imposing in the way he walks but very kind. My teacher beside him looked very small in comparison, but she was very loud and cheerful, especially with me. And they introduced me to my new best friend, this new wheelchair.
The wheelchair they carried was big, black in color, the ones you usually find in the hospital. I was very happy. You see, with this wheelchair it meant that I never had to focus on how to walk or how to position my crutch to make sure that I don't fall. Or how to take the next step without thinking about it. In fact, all I had to do was sit and let my friends push me around, and that was nice.
During that year, I knew that I had to focus on other aspects of my life, such as my studies. You see, ever since I was young, I've always wanted to become a physicist. An astrophysicist, to be specific. And with this newly found form, I could now focus on the things that matter and put 100% of my focus into it.
And so I did. That year, even the school accommodated me. They moved the classes to the ground floor and the toilets became easily accessible for me. Just the overall attention to detail was different.
However, there were still a few challenges. For instance, the cafeteria was not fully accessible and going to the library, which was situated in the first floor, meant I had to take the stairs. But, luckily, I had a reliable set of friends to help me with that.
When the year came to an end, I got my results and I found out that I passed with really good marks and I've been accepted to the university of my dreams. I was finally going to study astronomy and I was over the moon.
I did not know what to expect going to university. This was going to be my first time away from my family and friends and go into a new space and having to encounter new people. I was concerned, at first, how I was going to adjust, especially since I won't be close to the people that have helped me move around the past year. I was anxious about how people would perceive me and I was overwhelmed by the campus being very huge.
However, I was introduced to the disability unit of the university and they lent me a motorized wheelchair. Ever since I had been in this situation, I had to rely on people to do mundane tasks for me. But with this new motorized wheelchair, I could do the little things, like going to the dining hall by myself. I could go to the grocery stores alone and other small tasks.
This, to me, is what complete freedom means. The ability to do something without thinking about it. For the last couple of years, this had been taken away from me. This was a completely new world from the one I knew and, for the first time in a long time, I was excited to be somewhere.
As a third year astronomy major, my peers and I were excited to find out that we had to go to an observatory for a lot of experiments. I was very excited to have hands on experience with the telescope.
We went to HartRAO in the west of Johannesburg in South Africa. We spent a week learning about radio telescopes and how to perform experiments.
On the first day of orientation, we were told that we'll go on top of a 26 meter telescope, and everybody was excited, including myself. The moment I got there, I realized that the only way to get there on top of the 26 meter telescope was through a ladder. Of course, ladders and stairs are my nemesis.
I was devastated because I couldn't experience what my friends were going through. That made me sad and embarrassed about my whole situation. I was forced to the sidelines, much to my disappointment, as I watched my fellow students and friends ascend to the dish. I was very keen to be part of that experience and this was one of the very first, this was one of many experiences where I felt embarrassed by my situation. I was once again reminded of my physical limitations.
It would not stop there, however. One of the most important things that we had to do was go to the control room, controlling the telescope and gathering data. I found the control room was situated in the first floor on top of a flight of stairs. My friends helped me by carrying me and my heavy automatic wheelchair up and down the stairs for the whole week.
This was embarrassing for me because I had to watch my peers struggle every day but they did not seem to mind.
All of these challenges have shaped me become the person I am today.
So today is graduation day. I sit behind the curtain on stage eagerly awaiting the dean to say my name. I remember days when my late grandmother took care of me when I was ill, when she told me I was more than capable of achieving my dreams and that everything would eventually work out. I knew this was what she meant. She was talking about this very same day.
I hear my name being called. Mpho Kgoadi. As I make my entrance to the stage to shake the dean and being conferred my degree, I'm met with the roar from the audience that sent chills down my spine. This moment feels like all the weight from my shoulders have been lifted. This had been a feeling I haven't felt in a very long time.
I am not used to the spotlight so I don't know what to do as I approached the dean. Something tells me to gather up the courage and face the cheering crowd, and so I do. I hope my mom and my family can see the pride in my face as I roll through my freedom.