For a recent Lab & Life column in Nature Methods, I spoke with researchers about disability. You can find the column here  and here.

The piece includes, for example, entomologist Shigehiro Namiki who completed his PhD research at University of Tsukuba, was then a staff scientist at Janelia Research Campus.  When illness struck, he lost the use of his legs and was ready to give up trying to be a researcher. But he didn’t give up.

There are others in the story and I also produced a podcast with two of them. You can listen to it here.

And you can also find this episode called Invisible adversity in my podcast series Conversations with scientists on Apple podcasts, Google podcasts, Spotify and other streaming services. A transcript is pasted far below. 

Here is a bit more about two other people in the story: University of Delaware researcher Jodi Hadden-Perilla and her former student Olivia Shaw, who is blind. When the National Science Foundation contacted Hadden-Perilla, who for example works on simulating molecules computationally, they asked if she would take on a blind student as part of its Research Experience for Undergraduates program. “I had to pause to consider what we could offer,” she says.

Hadden-Perilla e-mailed with Olivia Shaw, to better understand how she uses a computer, which involves a screen reader and Braille display. After that interaction, says Hadden-Perilla, “I was sure we could make something work.”

“I was sure we could make something work.”

After all, she says, much in computational science is a command-line encounter: text is entered at a terminal, a response comes back. This is true when using a supercomputer, too. Researchers will submit a calculation, devise code to transform the result into a data plot. This, too, is “text I/O” on the command line. Shaw uses a computer that does much the same thing, she says: Shaw types in text, there’s output as audio or it’s readable output as tactile characters on the Braille display.

Thus, says Hadden-Perilla, all the tools were in place for her to get started doing research in her group. “We had to make some tweaks to get our software to play well with Olivia's assistive technology, but it wasn't long before we had her running molecular dynamics simulations of small proteins and doing basic analysis,” she says.

 Structural biology involves plenty of visual analysis and that did indeed pose a barrier for Shaw. “It took a shift in thinking about the way I approach research to consider strategies for making the visual aspects of our work accessible to Olivia,” says Hadden-Perilla. She herself completed her PhD research and postdoctoral training in force field and molecular dynamics software development labs. In her training, when something doesn’t yet exist that you need to do your science “you have to create it before you can move forward,” she says. That was “just business as usual.”

So the team took that same approach  for enabling Olivia Shaw in her work: They worked with an assistive technology expert through the University of Delaware’s disability support services, who trained the team to produce tactile images using swell-form paper. When the paper is heated a printed image rises up from the page. “Our first swell-form images were terrible, because all the lighting and shadows we apply to make renderings of proteins appear 3D to sighted people made them really confusing for tactile visualization,” says Hadden Perilla.

Much trial and error later, they achieved a protein representation that clearly conveyed 3D information for Shaw when it was printed as a swell-form image and that she felt agreed with 3D-printed models.

But it was a slow process to generate new swell-form images or 3D-printed models every time there was something new that Shaw wanted to visualize.

So the scientists connected with  a company, Orbit Research and received a Graphiti refreshable tactile display on loan. It’s a tactile computer monitor for people who are blind.

 The team wrote some functions so Shaw could manipulate the way proteins are displayed on the display and be able to rotate the proteins, zoom in and out. “The resolution was not super high, but it really helped her get a sense of the protein structure in a way that had not been available to her before,” says Hadden-Perilla.

 The team published the code as a plugin for the widely-used Visual Molecular Dynamics (VMD) software, which is used to display, animate and analyze large biomolecules in the Journal of Science Education for Students with Disabilities.

The paper about the software, TactViz,  is here.  The code is available here.

The hope was and is, she says, that other students or researchers who are blind can benefit from this work. The way the paper is being downloaded so frequently, “has really enlightened me to the unmet demand out there for STEM accessibility,” says Hadden-Perilla.

Reflecting on the experience, she realizes she had “this incredibly brave and determined person show up in the lab ready to devote themselves to science, even though the tools for them to do it didn’t fully exist.”

Says Hadden-Perilla, it never crossed her mind to not accept this student into my group. “I was a first-generation college student, and had a rocky start on my academic journey; I only made it to where I am now because of those individuals who were willing to help, encourage, or break down barriers for me along the way,” she says.

All students will face challenges: it might be a disability or a challenge of a different kind. And she says “I think we have to be prepared to meet them where they are in order to train great, well-rounded scientists.”

“I think we have to be prepared to meet them where they are in order to train great, well-rounded scientists.”

 In her impression she learned more from Shaw than Shaw learned from her. She had never met a person who is blind and had not yet thought deeply about the adaptations they make in their daily lives to function in a world designed by sighted people. “I'm really grateful that I got to meet and work with Olivia; she's an incredibly amazing and inspiring person,” says Hadden- Perilla.

 It was important to discover how important it was to listen to Shaw tell her what she needed to be successful, as opposed to Hadden-Perilla make assumptions “about what I thought she needed,” she says. “That was a bit of an adjustment for working with a student, because although I am an expert in my field, Olivia is an expert on being blind” she says. “Open communication between us was so essential.”

Shaw came to the lab as an NSF REU student in the summer 2019, then she transferred to the University of Delaware as an undergraduate through to the fall of 2020. “It was tough being a chemistry student who is blind during the pandemic when classes were all virtual, so Olivia ended up transferring again and pursuing a different career path,” says Hadden-Perilla.

Shaw transferred to Pennsylvania State University at the height of the pandemic, says Shaw when she realized that obtaining Braille materials during a pandemic “would be difficult to say the least.” She is just graduating with her bachelor of science in health policy. “This major combines my love of chemistry and my interest in public health and public policy” says Shaw.

Next, she plans to combine these interests into a legal career and is heading to law school next year. “I truly believe that my experience in Jodi’s lab prepared me for my future in the law in an incredibly unique way,” says Shaw. “I had the incredible opportunity to work with a mentor who was so engaged and wanted to see me succeed.”

“I had the incredible opportunity to work with a mentor who was so engaged and wanted to see me succeed.”

--

(Moyo Studio / Getty Images) 

Transcript of the podcast

Note: These podcasts are produced to be heard. If you can, please tune in. Transcripts are generated using speech recognition software and there’s a human editor. But a transcript may contain errors. Please check the corresponding audio before quoting.

Invisible adversity 

Vivien 
Hi and welcome to conversations with scientists, I'm Vivien Marx. I interview many researchers for my stories and these podcasts are a way to present more of what I hear and find out. Today I would like to introduce you to two researchers. Dr Uri Manor is a researcher at the Salk Institute who studies the dynamics of cells and Aly Putnam who is a PhD student at University of Massachusetts in Amherst. 

Uri Manor and Aly Putnam work in different fields and they are at different career stages. What they have in common is that they both have faced and continue to face adversity. They face an adversity of, the more invisible kind, because it's about their life in science as people with disabilities. They face adversity head on with strength, creativity and humor. 

They are in a story I did for Nature Methods https://rdcu.be/c1cFw and I thought I would share a bit more about them. Uri Manor At Salk Institute uses microscopy and all kinds of molecular and computational tools to study cells. He is also hearing impaired and talked with me about how this disability made it difficult for him to stay interested in school and made it hard to find friends. But he found creative ways to find his path and one aspect that mattered a lot and that might be surprising is music. Uri Manor talked about life in high school as a hearing impaired person. 

Uri Manor 
We've mentioned it before I'm hearing impaired. And so much of pedagogy and schools is listening to a teacher. And it's takes so much effort for me to hear, even to this day. But even more so when I was younger, even though my physical hearing has gotten worse, because everyone loses hair cells over time, they don't regenerate. Your hearing only gets worse with time. But my brain has gotten better, because I've got more familiarity with the English language and with communication, so I can do a better job of inferring what I didn't hear. So I can actually hear better now than I could in high school. Even though technically, my hearing was better in high school.

Vivien
Uri Manor wears hearing aids. He was born with impaired hearing that wasn't detected until he was two years old. He is now an accomplished scientist but he had a tough time in school, which he generally didn't enjoy.  

Uri Manor [2:20]
You know, high school, relatively speaking, was still easy enough that I could read the book, and pass a test, and I could figure out how to do the homework, I wasn't great, I was actually a bad student, because not only did I not get a lot out of the classes, I also didn't find most of the material very interesting, I was extremely bored. So I got pretty bad grades, you know, my father was a professor, my mother's father was a teacher, you know. So education is super important to my family. And I'm bringing home Cs and D's, and my parents, you know, would regularly ground me whenever I brought home a bad report card, and I would, you know, be punished. And it didn't really seem to work. It didn't help that much wasn't a great motivator.

I just didn't care. I really didn't. I would also, you know, as a hearing impaired person, I was very socially isolated. Because I couldn't just hop into a crowd of people hanging around joking, and participate in the conversation. I couldn't hear what they were saying. I missed a lot of jokes. And I think actually, oddly, a lot of my peers, especially when I was younger, I thought I was dumb, deaf and dumb. Because the way I hear is, I don't hear everything, but I connect the dots. And when you're younger, and you're still learning how to do that, it means your reaction is slow. Because someone will say something, and I'll hear 1/3 of it. And then I'll sit there and try to think through all the possibility that what they meant. And then I'll respond with, let's say, 80 90% accuracy.

Vivien
That 80-90% accuracy would make conversations and banter in a group difficult. 

Vivien 
So if it's a joke, or if it's something silly, you know,

Uri Manor
A question, you know, like, hey, Uri, or do you like that thing over there? Or what do you think of that bear? And my, my ear, because I don't hear consonants, but hear pear, tear, there or bear like, which one did they mean?  What did they mean? And then I've got to think about what do I think about it? And then I've got to answer. So even if I hear them correctly, I answered much, much more slowly. Which which with kids means the conversation has already moved on. Or they're wondering what's wrong with me? Why am I why? Why was it so hard to answer that question?

one on one was always  better for me. Always easier, always easier, because there's less background noise, and I could really focus and they knew, you could sort of sense what's going on with me. But in a group where you've got distracting people competing for attention. It was hopeless to me.

And then sometimes I even get it wrong, right? Sometimes 20% of the time, I didn't hear them correctly. And I would say something absurd. And they would laugh, and I will be offended. And then I have to decide am I gotta admit that I misheard. Or because I was really insecure about my disability. I wanted to be, you know, accepted as equal to everyone else. Of course, of course, that makes sense. I didn't want to admit that I had this debilitating disability. So I was very often compensating and not admitting that I had hearing loss and then I would be like, no, no, that's what I meant. I was just kidding or whatever. You know, like I did all kinds of really weird, wacky, stupid stuff that gets do or at least I did as a kid.
 
Vivien
When you have a disability it sets you apart from others in many ways. You are different. Which is not what you want when you are a teenager and want to fit in with others. 

Uri Manor [6:10]
And I think as we get older, and this was true with my parents, too, you start to appreciate more being original, being unique. So the advice I was always getting from my parents was, doesn't matter if you're the same or not, like, you should be proud to be who you are, which is true. 
But as a kid, you don't hear that. You just want to fit in and you want to have friends and you want, you know, there's a very deep biological, psychological need to be accepted. Because you know, in the ancient times, if you want accepted as part of the clan, you are dead, you are literally dead. So it felt like that, to not be accepted in the group. And that's what I felt most of my childhood. 

So I was extremely depressed. And when you're depressed, and when you're struggling to hear the information, I did not care about school, I did not give a sh*t. And so I wasn't a very good student, and I'm not sure anyone would have predicted that I would actually be successful in academia. Right? It's it's quite a, quite a contrast. 

But the thing that saved me was guitar, I started wanting to learn how to play guitar, and I loved music, music, unlike people, I can turn up the volume. And if I didn't hear something, I can rewind it and listen to it again. There are things that I can do with music that I couldn't do with people. And music is amazing. You know, like, I obviously have some sort of appreciation for math and for order and all of that's in   music. So I fell in love with guitar and music theory. And electric guitar in particular, I could turn up the volume again and jam. And that was my outlet. So I played a lot of guitar.

Vivien
I love that comment about how you can't turn up the volume with people but you can do so with guitar. Uri Manor loved guitar and it was a social tool for him, too.

Uri Manor 
That's what saved me socially was I made friends who also played and played in the band. And then I finally had a group of friends who valued because I was maybe one of the best guitar players in our high school. But I will also say, you know, my parents were worried about my school. And they decided finally to try the carrot instead of stick and they said.  We know you want a Les Paul, if you get straight A's, we will buy your Les Paul. So that is the one semester where I got straight A's.

It's a beautiful guitar. I fell in love with it watching Slash play it on MTV. I was like, This sounds so good. looks so cool. That the guitar I want. 

Vivien
Now as a working scientists he doesn't have quite as much time for guitar. 

Uri Manor 
not as much right? I was playing four hours a day. I don't have time for that. Right? Yeah, science is a full time job. And then some right and then I got a family. I tried to be home for dinner every single night and then put my daughter to bed and you know, there's there's no time so I just don't play nearly as much which means I'm not nearly as good as I used to be. I've got five guitars at home. I've got a classical guitar. I've got a acoustic strumming and then I've got my Les Paul still I've got a shredder 24 fret, you know, Jackson electric and I've got a 12 string.

Vivien
Uri Manor is serious about music and also about the tools he uses in his science. Since he develops tools that involve deep learning approaches and inference I wondered if that might connect to his daily task of inferring what people say due to his hearing impairment. 

Uri Manor [9:50]
That's a really interesting idea that I hadn't thought about until I was talking to you about it, when I sent the work and for right, because that's what deep learning does is. It runs inference. And one of my friends in high school once told me, for some reason, he thought it was really smart. And he said, I think the reason you're smart is because of your hearing loss. I think it gave you an ability to run logic that gave you a certain type of logic that most people don't have, or exercise I'm paraphrasing, of course, a very long time ago.

Vivien
In speaking with scientists about their disability it seems that they developed new senses and sensibilities. So I asked Uri Manor about that. 

Uri Manor 
The other thing that those experiences did for me, this is almost I mean, pure self promotion. And I feel like I'm about to congratulate myself, my struggles with being able to make sense out of unclear information, has given me a passion for education, and training people. And explaining concepts, I've always placed a huge amount of importance in being able to break things down into simple terms. And I know I don't always meet that job, and I've got a lot of work to do. But it's a goal of mine is to be able to explain things, so that it could be understood by a five year old, you know. And then the other thing is just recognizing that people come from different places. And so my passion for diversity, and giving people who haven't had the same opportunities, opportunities is really important to me as well. 

Vivien
Understanding diversity and appreciating diversity are part of how Uri Manor interacts with the world. He appreciates the adversity that others have faced and still face. 

Uri Manor 
They might be, they might be ridiculously creative people, right? You know, they may have all these strengths and potential that's just totally untapped. And it's a huge shame. That, you know, we're, we're in the middle of a pandemic, which is a great time to think about the types of challenges and the fragility of the human race, and just how much work we have to do to really unlock all the potential.

And I think, you know, life is way better than it was 100 years ago, or, or more, of course, and we've done a great job of making the world a better place for human beings, but we've got so much more work to do. 

And for that, we need to harness all of human potential, which means all human individuals, and we're not doing a great job now. But I think people are finally recognizing that the time is right to do that. At least most people, I'm super excited. I'm an optimist by nature. I'm a technophile by nature, I wouldn't be here without my hearing aids. 

So the whole concept of tools making life a better place is a deep part of me. And so when I hear horror stories about AI, or nuclear energy, or all of these things that have like clear dual use and danger, I always tend  to be biased towards the optimistic approach that we can really make life better and improve the world. In spite of the dangers, I think the dangers are problems to be solved, not reasons to avoid.

Vivien
it sounds like you are a technophile but also understand-beyond this technology will help or that technology that when it comes to people there are things that might have happened to them that might involve shame, shame about not being able to run because one leg is shorter than another, Shame because skin color wasn't like the other kids. 

Uri Manor 
Insecurity. But that that brings up another point I really liked. Running analogy is this concept of adversity that I feel like science in particular, in almost any endeavor, any any expertise or effort to get better at something requires the ability to deal with adversity and to conquer adversity and confront it. And for that reason alone, I think a lot of people who didn't have the fortune that other people had may be the most well equipped to actually and become the most talented, powerful people in the world. Because because they had adversity. 

Vivien
Adversity can makes people the most powerful in the world. How cool is that. That was Uri Manor researcher at The Salk Institute. Next I would like to introduce you to Aly Putnam, who is a PhD student at University of Massachusetts at Amherst.  

Aly Putnam [14:45]
I am, you know, passionate about accessibility issues in STEM, and all the other issues in STEM. It's like one of the many other issues that I think about and care about so many things, right. 

My name is Aly Putnam. I use she her pronouns. And I am a fourth year PhD candidate in the organismic and evolutionary biology program at the University of Massachusetts in Amherst. I identify as a marine ecologist, but like my like, that's my broad term that I'll use when I'm talking to like, all scientists who like you know, a physicist or someone or my friends who are engineering like, I know, I can say I'm a Marine, biologist, marine ecologist, and they like know what that means. When I talk to, like, everyday folks, I say that I'm a scientist. I just start there and Then they say what kind of science do you do? Don't be like, Oh, I, I studied the ocean. And I study the the organisms that are at the coast, when you go visit the rocky shore in New England, I study the seaweeds and the crabs and all the things that you look at when you are exploring the beach, and I study why that space looks the way that it does, and then how climate change might change how that looks over time. 

And then when I talk to my marine community friends, I usually describe that I am a marine ecologist who is interested in species interactions in the rocky intertidal of New England, species interactions between invertebrates and algae or invertebrates together, and how climate change may alter species interactions and community composition. And trying to figure out why how, what are the mechanisms and, and that, like, really, I don't tend to put myself in like one bucket I describe to like my marine folks that like, I am interested in, you know, non native species and species that are shifting their range due to climate change or human transportation. But I don't consider myself a invasion biologist or a marine invasion biologist, I have a focus on that I have an interest in that. I like to use methods that involve laboratory work to get at physiological responses to climate change components like temperature, but I don't consider myself a marine eco physiologist, I don't only focus on the physiology of organisms.

Vivien
And by the way, I hear your kids, and that's totally fine. They're also on the recording, if you need to leave for any reason you're out, okay? Or they're like, Mom, open this, I want a snack or whatever.

Aly Putnam
Thank you. I appreciate it. I think one of them is on his online class. So he should be occupied for the next hour. And then the other one is done for the day. So she sounds like she's upstairs playing with the piano and singing very loudly. I don't know if I mentioned in my email to you that I homeschool.

I homeschool because my immunocompromised status leaves me vulnerable to sending my kids off to the petri dish that is public schools. No, I love public schools. But then my kids were always bringing home germs, you know, prior and now with COVID, we had to make some decisions about how to be able to, you know, move forward with life on really strong immunosuppressant medication. With during a pandemic, where kids in schools are not masking and things, kids pick up drums anyways, because we're in close contact. And so we are homeschooling while I'm doing a PhD.

Sometimes I get challenged with, you know, doing statistical analyses for my research. But there's been nothing like scrubbing off my brain to teach sixth grade algebra that I haven't thought about in a long time.

Vivien
Like all of us, Aly Putnam has faced the pandemic and but her health has meant she needs to make all sorts of arrangements. 

Aly Putnam
I shifted my PhD to be mostly field based, because I knew that I could be safe, physically from potential COVID. Brain. Exposure, there we go, that was the word I was looking for. 

Sorry, this might happen a few times I have, I have Crohn's disease, right, I have this GI-immune system dysfunction, but my immune system, and how it behaves with my gastrointestinal tract, it also impacts my brain. 

And last year, I was having some really strange symptoms about like, I couldn't find words, I could like see the word, but I couldn't like say it. And so I went and had an MRI. And it showed that I had a whole bunch of white matter, changes in my brain, and some lesions. And so I started seeing a neurologist. And a whole year later, we've come to the fact that the same immune dysfunction with my Crohn's is happening in my brain. And so I've got inflammation in my GI tract, but I also have inflammation in my brain. And so sometimes I might struggle to find a word while we're talking. 

With my brain condition, I often feel like I'm gonna say the wrong thing or not say it appropriately, or say it clearly or most articulately around my really esteemed colleagues. And so then it can feel really isolating in that I don't maybe I won't say something. And then they and then I like panic. I'm like, oh, gosh, I think I'm not smart enough, because I didn't like contribute to the conversation, when really, I was trying so hard to like, figure out how to say what it is that I was thinking. And so that's definitely been a challenge with my brain condition to be like, I know, I, I know, I know, things. And I know I, I can think about things. Well, it's just being able to, like get it out takes a little bit more time. I don't just can't like, bring it out of my mouth as quick as someone who like shoots their hand up and says something like, amazingly brilliant. 

I'm over here, like, oh, what's the word for like, tile? Like, I can say this? I know I can. So yeah, it's a slower process. And it can be embarrassing, I almost feel more embarrassed about my brain than I do about my Crohn's To be honest, because like, I'm with a whole, you know, group of people who are just so smart and so intelligent and can communicate really well. And it's a little bit harder for me to communicate as quickly. 

It's definitely been a struggle over the last couple of years, because I like had my, this all kind of started with my brain probably in like, end of spring of 2020. And then like, I didn't have a final diagnosis until, until, like, February of this year, with like, because I had to go through all the testing, spinal tap, I had all the MRIs, they look, they did all the stuff. So took a long time to get to a place of like, oh, this is what it is. And in the meantime, just being like, sorry, I'm sorry, that I'm struggling with communicating with you about marine snails right now. But I've got a big ol' white matter lesion on the front of my brain, that's why.

I do get some headaches, and it makes me really tired. And, like, I would say that the headaches are not nearly as frustrating though, as like wanting to try to articulate something in a, in a better manner than, like, plain simple words that just can come out, because that's all I can figure out how to get out of my head. 

So but the Crohn's itself is definitely the more like, painful, frustrating. Well, it's all frustrating. 

But in terms of pain, the Crohn's is, is the more painful because it also isn't even just in my GI tract, like you feel it in your you like it affects your joints and, and your muscles. And so but yeah, it's definitely been an interesting journey with my health because like, once, you know, I figure, I figured out that I have Crohn's disease, yes. And I've been living with that for 12 years. But then like other things change, and you thought you had a handle on what was going on with you. And then you learn more things about your health as it evolves. And then like figuring out how to live a new after you, like, come up with your new symptoms.

Vivien
Crohn's disease, brain inflammation, two children who need to be home-schooled due to her immune system vulnerability, a PhD. Aly Putnam has her hands kind of full. But she is also determined about all of these things, which made me admire her will-power and strength. 

Aly Putnam [24.30]
I certainly have days where I'm like, I can't do this. Like, I can't keep up with the people in my field. I can't keep up with, you know, this intensity of field work or. Or like I'm, I'm not physically and mentally like good enough for all of these things. And I don't fit in the puzzle anymore because of these things. And then, so those days totally exist. 

And then I have days where I'm like, Okay, we've got to like keep going like this has been your dream forever. And there are people out there who, you know, can do these things too. And if you keep going, then you know, you might be able to help someone else realize that they can keep going. And so I think that it's like a up and down swing oscillation between those things, those thought processes, but that overall, you know, I really love science. I really love the intersection between science and people, and science and education. 

Because I think that, you know, I have things to contribute to the scientific community around issues of marine ecology and climate change, but that there are young folks coming up behind me or folks who are older who decide to go back to school, because they are refiguring themselves out who have like, even bigger capacity for contributing to science that like, I want to help, you know, foster those people. So I don't always look at myself as like, oh, I'm going to be the best scientist in the world. Like, I want to be a really good scientist who contributes to, to the scientific community, but I also want to be someone who helps foster and promote the upcoming scientists and, you know, like, scientists with disabilities, like, because they have so much to offer to the scientific community. 

Vivien 
Before getting a bit more into Aly Putnam and her fieldwork, I asked her about the advice she gives to other people, perhaps looking at PhD programs or graduate programs of other kinds as they figure out if a university and a program will accommodate them, appreciate their disability and help them through the program. She recommends to ask about the culture of the program. Ask about affinity groups. 

Aly Putnam
I think there's like two thoughts I have. One is that I think, for the person themselves, I think it's important to like really do as much diving into information as they can, you know, searching websites to see what kind of affinity groups exist in the department that you are looking to join, you know, talking with other students in the program that you might be interested in, and coming up with questions and asking, you know, about what type of resources exists for students, you know, needing X, Y, or Z. 

And so like really asking a lot of questions like, don't be afraid to, to reach out to the lab, lab members of the person that you might be interested in joining. Because they have information that they can share with you. Don't be afraid to reach out to students in the program that you are interested in joining. Because, you know, they will, they will also have information on the culture of the program and the institution. And so I think you're asking a lot of questions, which like, I think we all as scientists, like naturally are very question, you know, inquisitive and have a lot of questions. 

So apply that to the people, the programs and the departments and institutions that you're looking at. But then I also think that the like, flip side of the coin is that the institution, the program, the the department, the PI  should be transparent about what it is that they are, what levels of support that they have, what types of groups that, you know, affinity groups might be part of the program or department like that. 

They also need to do the work to like they should do the work too, so that it's not only on the student to like you grind through meeting tons of people and asking tons of questions which can, you know, could be a little bit vulnerable of a situation for the student and could be overwhelming could be a little bit scary. So I think it's a little bit of both like that the students should try to reach out, but I really encourage institutions and departments and programs and PIs to describe some of those things online. Um, you know, honestly, and transparently.

Vivien 
Sometimes someone might find a program but then still need to make changes. 

Aly Putnam
I made an advisor switch last fall, and my advisor, my current advisor, Dr. Michelle Staudinger, she runs a phenology lab, so about like, you know, timing of, of an organism's life history and how they go about doing things in the world. She has been, you know, really fantastic about, you know, supporting my, my needs through this thing that we're calling a PhD in a pandemic.

Vivien 
PhD in a pandemic is a special kind of PhD program, the pandemic has changed some of the fundamentals of education and training in such massive ways. 

Aly Putnam [30:30]
I feel like I've had to restart my PhD three times. Because I started my PhD, the semester before the pandemic started, so fall of 2019. And then the pandemic happened in the spring and and all the plans that I had planned for the whole year, were gone. And so yeah, it's been quite an interesting thing to operate through the, this pandemic, I'm so sorry, I need to stop my dog from barking. Sorry about that just wanted to get her quiet because I don't think that was going to stop. Someone knocking at the door and she just got very upset about it. She's a nine year old, almost 10 year old greyhound. 

The lab that I'm in, is allowing me to pursue to finish to pursue and finish given my complication with my health and the pandemic, and the flexibility that I need. Because of that, you know, I think like, as an immunocompromised person, I'm immunocompromised because of my Crohn's disease. But then I also take a I get a monthly IV infusion to turn my immune system, like off. So, so I'm extra compromised. So I don't you know, go on campus, which has 25,000 people on it. UMass Amherst is a very big college.

Definitely a pretty dangerous world there. For me, you know, masking isn't mandatory, and I can wear my mask. But if we've got a whole, like big clouds of COVID, everywhere, where there's just a lot of people just a very populated place, so you know, the chances of exposure are higher for me. So I need needed and need flexibility around, you know, remote access, and timing of things. 

Because taking getting my infusion takes time, it takes a whole day. And then it hits me pretty hard, and I need to kind of rest the next day, so I'm not, you know, totally 100 The next day. And I've been on medication, you know, a different immunosuppressant that took me a whole week to recover. And I would get once every two months, but it takes a whole week of my time that, you know, then like, how do you, that's where the flexibility part comes in is, like, you know, having someone who understands that there are days that like, some stuff gets done, and some days, we're not a lot of stuff gets done. And then there are some days where a lot gets done. And then so, you know, my my lab and my advisor, you know,  I've always been really upfront and honest about my, my health and my disabilities, because I think it's just my personality to talk about those things. And also, I've learned that if I don't advocate for myself, that there's not a lot of people who will advocate for me, especially if they don't know. 

So I automatically go into like, advocation mode of like, okay, here, this is who I am, like, I I'm come straight up front, when I meet you, like, This is who I am, this is what I got going on, this is what I can do. This is what I want to do, like, how can we make this work together, and my advisor has been really fantastic about understanding that I homeschool my kids and you know, given me the flexibility to you know, for deadlines and working at my own time, you know, pace and whatnot. And that then my other research is all you know, field based. 

And the the ocean, the tides are not as flexible with me as my advisor is. But, you know, I do all my research out outside and you know, she's great about making sure I have what I need to do what I need to do and, you know, is great financial support in terms of, you know, funding me, and, you know, the work that we do together is great. 

She creates a space for me to be able to say, hey, like, I, you know, I'm not able to do X, Y, or Z right now, because I've got, you know, my immunosuppressant today, or I have not been feeling good. And so me just like letting her know, and giving her that heads up. Communication, you know, is really key for a successful working relationship, given my complications, because, you know, we don't see each other every day in the hallway, you know. She's not going to know, if I'm dying on my couch, like with my heating pad on my stomach, like, unable to sit at my desk, you know, so I have to communicate those things. And you know, she's great about hearing those things.

Vivien
An important decision a scientist with disabilities has to make is what to tell others in the lab. And when to do so. 

Aly Putnam
I'll say like, Hey, like, you know, when I first met them, like, I've got Crohn's disease, like, just so you know, like, if I gotta rush off, for some reason, like, I'm running down the hall, like, Get out of my way, like, or, you know, rush off from my Zoom call, but then also, it helps, you know, to share that type of stuff, because everybody has their own level of stuff that they've got going on. Right. And so I've noticed that when I share my, my health issues that then some people feel a little more comfortable saying, like, Oh, I've got some things going on to like, Thanks for saying that, like, I, you know, I actually didn't know, I needed to do only remote lab meetings, like, and how helpful it was, you know,

Vivien
As I spoke with Aly Putnam I learned how many layers there are to being a researcher with health conditions like hers. She talked openly about self-care and mental health. 

Aly Putnam [36:40]
One thing one thing that I've noticed about, like, doing science in this type of way, you know, as a research scientist, is that, you know, the boundaries of your time, and your thoughts are not always so strong, like, you know. It's not like five o'clock, and you shut off your computer, sometimes I do, I really try hard to, like, you know, put boundaries up, but, um, you know. 

You like, think about your research at three o'clock in the morning, or, like, you've got a deadline for something or, you know, so the boundaries are a little squishy sometimes. 

And so, then you realize that, like, your job, and your life, and your health and your, your world are all really interconnected. And so if, if you're not able to, like, take care of yourself, and really, really get the support that you need, sometimes, like various parts of your job suffer, or you suffer, because you're, you're putting too much to the job, and it's not, you know, you're not taking care of yourself in the process. 

And so, you know, I think work-life boundaries are really important and work-life balance is really important. But also that like your job, and you're who you are, like, they interplay with each other. So, you know, if you're, if your whole person if that whole person is not, you know, supported in ways that the job wants the whole person there, then how can you really like, bring your best work and how can you meet certain objectives and needs? 

Vivien
This seems really wise and helpful to remember how work and life interplay. 

Aly Putnam
For me the stuff going on with my health, you know, and my disability like, it's a forever thing. It's, it's not it's not curable. Nothing is like I have good days and I'll have really bad days and I'll be in the hospital one time and I'll be able to let To climb a mountain another time
Biological immunosuppressants, you know, have some complications to them, for sure. But they definitely have allowed me to live my life a little bit more normally. And then, and then I was on a different immunosuppressant during the spring of 2020, right before the pandemic happened that gave me pancreatitis, I had an allergic reaction to it. And I was in the hospital for like a week and a half
 
Vivien
The type of disability Aly Putnam faces has so many dimensions, is painful and difficult. I wondered how she can do her fieldwork for her research project. 

Aly Putnam 
So I have three different regions that I work in, and I'm so glad New England is as small as it is. 

Because I do I have field sites in Long Island Sound on the Connecticut coast. I have filled sites in Narragansett Bay in Rhode Island, so upper Narragansett Bay, and then down at the point at the bottom of Narragansett Bay in Rhode Island. And then I also work out in Boston Harbor on the Boston Harbor Islands, which that is a little bit more challenging to bring my toilet because I've got to drive there and then get on a boat, and there's only so much space on our little boat. 

So, yeah, so I drive a lot. And, you know, during the beginnings of the pandemic, it was a really challenging period, to be able to go to my field sites and find a safe bathroom. You know, that I could, I didn't want to expose myself, you know, in a rest stop, or in a gas station. So I would either have my travel toilet that I bring, or I like knew exactly where every single Porta Potty outdoor Porta Potty happened to be on my route from point A to point B. 

Vivien
And there is no app for that that would be totally useful. 

Aly Putnam 
Oh, that would be so great to have a Porta Potty app. I hope someone listening to this comes up with an innovative way to communicate with the Porta Potty companies and then creates an app with GPS locations. 

Vivien
The app world could really take Crohn's disease into account and other people who have urgent needs to tend to while on the road. Actually Aly Putnam has bought her own portable toilet for her fieldwork. 

Aly Putnam [41:20] 
The great part about some of my field sites is that some of them are really remote. And so I don't ever see another person there. Um, and then, you know, some of them have like big boulders and things that are, you know, easy to kind of hide yourself behind. But, you know, like, it's definitely, It's not easy doing field work with Crohn's disease. Because, yes, there's the sometimes the urgency need to use a restroom. But then there's a lot of pain, abdominal pain that comes with it, and there's a lot of exhaustion and you're like the capacity to walk around a lot for long periods of times can be draining, you know, I am a really active person. I specifically do a lot of like, working out lifting weights walking and things so that I can keep my muscles like in, not in shape to be in shape, but so that I can keep up with some of the demands of like, being out and doing fieldwork.

 Because, as Crohn's disease, you are not so good at absorbing nutria It's so you're not really getting all the nutrients that make your whole body, your whole body healthy and functional. And so like I try to, you know, you can try to eat as well as you can to support your strength and your endurance. But you can't, it just doesn't come down to that. So I have to, like, make sure that I keep, you know, training throughout the year. 

Because I also do field work all year round. I'm not just a person who does field work during the summer, I do field work all season, every season. 

Vivien
Her PhD research project is about modeling climate change on a small scale and in the field. 

Aly Putnam
One of my experiments that I'm super excited about is a climate change, infield climate change, sort of related experiment, you know, being able to mimic climate change conditions in the field is hard. Because you can do that in the lab by using, you know equipment to heat up water. Or you can mimic elevated sea level by having containers with more water or you know, there's lots of ways that you can manipulate variables in the laboratory, but it's not as easy to do with in the field.

I've got this really cool title experiment where I'm using settlement tiles that are square like this. This is one of them. There, I have white tiles and I have black tiles, and the black tiles absorb solar radiation and heat up the way when you go out in a hot on a hot day with like a black shirt on your little toastier it's the same concept. I've done the statistical analysis and the black tiles do heat up by one one and a half to two and a half three degrees warmer than the white tiles and and the rock.

Vivien
And what are they? Are they tiles like bathroom tiles? Like are they ceramic or are they?

Aly Putnam
These are made out of high density polyethylene plastic. So I screwed I drilled into the rock and I screwed a tile on the bottom. 

Vivien
I see. So you're really giving I guess crabs or other organisms a way to test do I like this location better or this location better?

Aly Putnam
So what's going to end up settling on this tile ends up being like barnacles and sometimes mussels and like settling sessile organisms, sometimes seaweeds like the brown alga Fucus vesiculosus. And so then there's this temperature logger. This I love this logger. It's my favorite temperature logger by electric blue. It's called The End flogger, and I have the two tiles, one tile gets drilled into the rock. 

And then I take my logger, and it's placed in between the two tiles and the tile goes on the top. And so it's able to measure the temperature that's happening with these tiles here together. And it takes a temperature recording every I have it set for every 30 minutes. 

And then I use my phone, the best part, is that I use my phone and I just place it on top of the tile. Oops. And it'll connect and then I'm able to download the data out of the tile without having to like take the tile back apart, disturb any organisms that are on it . And then I'm able to you know, suck out the temperature data over time. So I've got I've got you know, water and air temp per the tile every 30 minutes for the last year and a half.  

Vivien
She devised this system of in the field climate change modeling by riffing on other concepts from  other scientists. 

Aly Putnam [46:40] 
There there were some other researchers,Rebecca Cordis who did something like this, you know in like 2015 I think her paper came out. So she you know, she kind of started some of this work and there's been some other researchers Lathean and McAfee who have looked at how, like if you use color as a substrate, are you able to warm the substrate, and then how might that impact, um, you know, the settlement and survival of various organisms. But, you know, those happened in kind of different areas of geographic areas. And so this I've got set up in southern New England across the Connecticut and Rhode Island coast. 

And so basically, the question is, you know, how does increased substrate temperature impact the settlement, survival and resulting community composition of, you know, intertidal marine organisms. 

And so in theory, we're, you know, hoping to see that, or we might see a difference between the community that's on the black tile that is certainly warmer, you know, throughout the year, and the community that's on the white tile, which is, you know, significantly cooler. 

And as a sort of a proxy for how clima te change, you know, can impact community diet, community composition and dynamics. 

Vivien
This experimental setup is a way to track all through out the year which organisms react how to elevated temperatures and lets Aly Putnam look at the different communities in these mini-environments. 

Aly Putnam 
That happens all year round. That happens all year round, because organisms settle at different tim es of the year, like one barnacle settles in October, and other barnacle species settles in January, mussels settle at a completely different time period. The algae also, you know, spore and settle at other time periods. So this is a long term experiment that I'll probably end in, in September of next year. 

And then I do research in the Boston Harbor, on a completely different project, where we're looking at assessing the biodiversity of the intertidal of these islands, which have only been sampled a handful of times in the last 50 years. 

So that the National Park Service, because Boston Harbor is a Federal National Park, has baseline information. And also in the process of evaluating the biodiversity, we're working to develop a biodiversity protocol and set of methods that can then be used by National Park Service, to continue on monitoring after we are done with this project. 

Vivien
She is doing her PhD research and at one point she will want to share some of her results with colleagues, say at conferences. As an immune-compromised person with a chronic disease, Crohn's disease, that's going to be hard. COVID has made in-person conferences a treacherous place for her to be. 

Aly Putnam
One thing about my, like me being in my position right now as a very immunocompromised person and pandemic is that my abilities to interact with people are much more limited. You know, I'm not going to conferences in person. And at this point in the pandemic, which is still ongoing conferences and things are less and less hybrid and more and more back to being in person. 

COVID has created, you know, this new virtual realm here or enhance the virtual realm that I think actually can increase accessibility, like it is an it has created  more access to more people, because someone who maybe is bed-bound for a certain period can still hop on Zoom, if they would like to, to attend a virtual meeting or attend a talk that is happening and still learn and not have to then physically go to that space.  

There have been some good things that have come through Zoom, and I know people who are like, I'm all zoomed out, but like, folks like me are so grateful for Zoom. I'm so grateful for Zoom, I'm so glad to be able to connect with people virtually to continue to learn to continue to meet and interact with people in my field and outside of my field to get to have conversations like this with you Vivien, you know, so. Yes, I'm a little zoomed out sometimes, but like, I also recognize how important Zoom is for for my continued forward progression in my career for right now. 

Vivien
One aspect that I wondered how to handle what is sometimes called an invisible disability or a less visible disability. The question then becomes when do you—as a scientist with colleagues in the lab and elsewhere--share your disability and with whom. It can be, she says, a way to feel so very vulnerable, which can be uncomfortable. But, she says sharing can also get you support you might not know existed. 

Aly Putnam [51:50]
It's hard, you know, because folks look at you and think that you are, quote, unquote, normal, you know, like, everything's fine. You know, and I just say, Oh, I've put on a lot of makeup to try to hide the exhaustion that my Crohn's gives me like, I look normal, but trust me, take a look on my insides. And I'll show you pictures from my latest colonoscopy. Well, that doesn't look very normal. 

No, but, you know, like, folks who appear quote, unquote, normal on the outside, you know,  it'll go, someone won't ask you like, what's going on, unless you then disclose, and then some people don't want to disclose what's going on with them, because they've been met with, you know, adversity or, or lack of empathy. And so, and also, like, some conditions are embarrassing, or people might not feel good, or wanting to be vulnerable. So then it just stays invisible.

And, you know, I think if you were to share that, and not know that there were support systems that could be put in place for you, you know, because again, like, not everybody knows what kind of support exists out at their institution for them. 

And some institutions are better than others at making sure that that information is really readily accessible. So, yeah, I think, you know, invisible illness and visible disabilities is a challenge. And, one that kind of, you know, gets overlooked because you don't really see it. But the people living with invisible, illness and disabilities are struggling, you know, have their own level of struggling, struggling just as bad and, you know, have their own challenges that need support. 

So, you know, I think, I think it's like about creating a space of belonging, and a space of being welcomed and open. And, and that, like, issues around disabilities and accessibility are cared about and thoughtfully attended to that if though, if that is in place, like it, it can create a place for those with visible disabilities and invisible disabilities, particularly for the folks with invisible disabilities to come forward about or or at least be able to tap the shoulder of someone about what they might be going through so that they can receive the support that they need. 

Because I think a lot of people that I've talked to who have had who have invisible disabilities are like, well, this environment does not feel safe. If for me to say like, oh, I struggle, like with my health with X, Y, or Z, because I'm afraid of the repercussions, because the environment is not conducive to feeling that you will be cared for. And so that's I mean, that's a whole culture issue that needs to be to be worked on, you know, within labs,within departments and programs.

Vivien
Navigating academia and a PhD program is tough. Add to that disability or chronic disease and things get tougher. Aly Putnam has some advice.

Aly Punam
It's hard to navigate, right, like, so there are many, many, many layers of complexity for people with disabilities, both visible and invisible, to try to navigate through like, it's both physical, it's emotional, it's, it's, like professional, like, there's so many layers to navigate, that can be so hard. And I think like, I just, I try to tell myself, don't give up. Try not to get too sad or bitter, like, try your best to, like, make a change for the people who are in your community and coming up behind you. And to be an advocate for change. So that other people have it better, you know, as you move on. 

Vivien
That was Conversations with scientists. Todays guests were Dr. Uri Manor a researcher at the Salk Institute and Aly Putnam a PhD student in marine ecology at the University of Massachusetts Amherst. They both talked about doing science as people with different kinds of disabilities and conditions and had, I feel, incredibly powerful aspects to share about their path. 

The music used in this podcast:
Funky Energetic Intro by Winnie the Moog. And the other piece is Paper Flakes  by Rafael Krux, licensed from film music.io and the artistis' web site is orchestralis.net. 

And I just wanted to say because there’s confusion about these things sometimes. The Salk Institute and the University of Massachusetts did't pay for this podcast and nobody paid to be in this podcast. This is independent journalism that I produce in my living-room. I’m Vivien Marx, thanks for listening. 

Free download: https://filmmusic.io/song/5695-paper-flakes
License (CC BY 4.0): https://filmmusic.io/standard-license
Artist website: https://www.orchestralis.net/