Disability Pride Month at Communications Biology

July is Disability Pride Month here in New York, where part of the Communications Biology team is based. To mark this occasion, here we feature interviews with scientists across career stages with the hopes of redefining public perception of what it means to be a scientist with a disability.

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July is Disability Pride Month here in New York, where part of the Communications Biology team is based. To mark this occasion alongside our editorial, we are featuring a series of interviews with the aim of highlighting scientists at any career stage with a disability of any form and redefining public perception of what it means to be a scientist with a disability.

Professor John R. Hutchinson, The Royal Veterinary College, UK

Alt text: John Hutchinson smiling in a white shirt and shorts crouching down beside a pangolin.

Professor Hutchinson is a Professor of Evolutionary Biomechanics at The Royal Veterinary College. He gained a BS degree in Zoology at the University of Wisconsin in 1993, then received a PhD in Integrative Biology at the University of California with Kevin Padian in 2001, and rounded out his training with a two-year National Science Foundation bioinformatics Postdoctoral Fellowship at the Biomechanical Engineering Division of Stanford University with Scott Delp. John started at the Royal Veterinary College as a Lecturer in Evolutionary Biomechanics in 2003 in the Department of Veterinary Basic Sciences (now Department of Comparative Biomedical Sciences), in 2008 became a Reader, and in 2011 became a full Professor.

  1. Tell us about yourself and your career path.

I’m from Wisconsin (USA) and did my PhD in Integrative Biology at the University of California in Berkeley, where I specialized in locomotor biomechanics, anatomy and evolution; first with dinosaurs and then with elephants, gradually expanding my taxonomic repertoire across vertebrates (and even echinoderms) over my career. I’m interested in how locomotion has evolved across major transitions in concert with body size and anatomical-functional transformations. In 2001 I got an NSF postdoc in Bioinformatics to learn musculoskeletal simulation tools from engineers at Stanford, then in 2003 I was hired to become faculty at the Royal Veterinary College in London (UK), where I’ve been since; as a Professor of Evolutionary Biomechanics since 2011.

  1. What has your experience been like being disabled in STEM?

I’ve had a strange journey through chronic illnesses, with one in my early 20s, then a stroke in my early 30s that left me with some cognitive deficits but no real physical ones, and that led to epilepsy emerging in my early 40s; I suspect these things are all related. The first toughest aspects for me of being disabled are the internal frustration of having difficulties concentrating or having sufficient energy to do the challenging science I do, due to “brain fog” that has gradually worsened over the years, and associated mental health struggles. The second toughest is the more external frustration with being invisibly disabled. It feels hard to convince people that I’m disabled; especially as my career has been so “successful” by many metrics. But the struggle is real, and hard to describe to others or somehow wear on my sleeve so that they know it is there.

It has not been a positive growth experience; I do not feel “scarred but smarter”. It has just been incredibly gruelling, and as a senior scientist a rather lonely experience, too; without finding role models or other special support outside my family. In terms of coping mechanisms, I’ve tried to learn to let go, to not guilt-trip myself when I feel unable to do things, and focus on what I can do, and do the hardest things when I feel most able to. This takes some self-awareness, and is quite challenging for self-forgiveness, as I remain a highly motivated person. I also try to get myself to reach out more, going against my introverted tendency to withdraw when I am suffering; to share my struggle. That helps. Earlier on, I found blogging about my struggles highly therapeutic. One extremely traumatic event is explained here: https://whatsinjohnsfreezer.com/2014/11/09/uncertainty/

    1. What has been something that has improved accessibility or support in your workplace?

    I’ve been amazingly privileged to have already had great success in my career before my true disability set in, so that I did not have to worry about job security or work overload; the flexibility of academic life worked in my favour here. And my university has been tremendously supportive of me—I feel trusted that I can get my job done without interference or added stress from those “on high”. I cannot think of what more anyone could do for me, as my disability isn’t one that requires special accessibility or other issues. Mainly it requires patience from others, and I get that; even if they cannot quite grasp what I’m going through.

    1. Are there specific colleagues, researchers, or practices that have improved your experience in STEM?

    I’ve had the great fortune for many years now of having a wonderful team of collaborators (including students) working with me, who have helped keep my research programme progressing and giving me a lot of joy through mentoring them and discovering or learning new things together. This is what keeps me going at work; it gives me real purpose and a feeling that I’m giving back to the community after the wonderful mentorships I received as an early career scientist.

    But there was one event that stands out to me as a disabled scientist; I’ll never forget it. Not long after my worst, early epileptic seizure, my Head of Department Nigel Goode met with me and said to me something like, “John, you’re disabled now and that’s a powerful thing.” That realisation hit me like a thunderbolt; I’d never identified until then as disabled, and so didn’t think that I might deserve and need special attention. He then proceeded to work with me to find ways I could have less stress and more flexibility at work. This certainly aided my recovery and happiness. I thanked him for this with teary eyes at his retirement, as this was a transformative, empowering moment that helped me accept my disability and expect others to accept it as well.

    1. What is something you’d like people or institutions to understand about working in STEM with a disability/mental health condition?

    I can only speak to my experience, as these conditions are so unique, but that leads to the point that if we become aware of others’ conditions, we might ask them what they need, if anything, and help them get that if they can. As an invisibly disabled person, I wonder how much understanding there is of that issue in STEM, especially regarding issues surrounding equality, diversity and inclusiveness. Since by definition it cannot be seen, it requires one or more parties involved to be aware of and to speak up on its behalf. It might casually be dismissed or rationalised by someone as a “lower-eschelon” disability even if they are aware of it. If a disabled person tells you their story, it can help to say “That would be tough for anyone”, validating their experience, rather than to say “But you’re doing so well!” which might come as cold comfort. The person with the condition is in a vulnerable position where they may feel reluctant to point out their disability for a variety of reasons; including that they may be tired of pointing it out, as yet another reminder of their struggles. And it is difficult for someone to truly understand another’s invisible disability, as it is such a hidden struggle, but like any other disability it is arduous.

    Megan Clarke, University of Minnesota

    Alt text: Megan Clarke smiling and wearing a light blue button-down shirt with birds on it.

    Megan Clarke is a current graduate student at the University of Minnesota researching garment and textile-based respiration sensing. They were previously a research fellow at the Harvard University BioDesign lab working on soft robotic garments, including the soft robotic glove which was featured as a part of the Cooper Hewitt Smithsonian Museum of Design Nature-Design Triennial exhibit in 2019. Megan is an accomplished researcher who brings their innate sense of curiosity and joyful approach to research activities to the projects they work on. They especially look forward to the start of their tenure as a National Science Foundation Graduate Research Fellow in fall 2021. When Megan isn’t in the lab they enjoy playing a variety of board/card/video games, sending snail mail, and sewing.

    1. Tell us about yourself and your career path.

    Growing up I was endlessly fascinated with the world around me. My high school science teacher was a huge influence on my eventual path to wearable technology in addition to my grandmother entertaining my ambitious sewing projects. I have had something of an odd and winding path to my current position as a graduate student. I graduated with a B.S in Apparel Design from the University of Minnesota – Twin Cities in 2017, then joined the BioDesign Lab at Harvard University as a Functional Apparel Design Research Fellow. There I worked on several projects involving pneumatically powered soft robotic garments to assist with post-stroke and spinal cord injuries.

    I started graduate school in 2020 at the University of Minnesota – Twin Cities and am a research graduate assistant at the Wearable Technology Lab researching active textile compression garments. In the fall I will begin my National Science Foundation Gradate Fellowship tenure focusing on textile and garment based respiration sensing and monitoring.

    1. What has your experience been like being disabled in STEM?

    It has been challenging at times, especially given the desire for high-quality, but fast-paced research and the “publish or perish” mindset. My background is in textiles and apparel design, which often means I have to do a fair amount of research and learning new to me concepts, and troubleshooting various equipment, machines, and software. While said work is highly rewarding and interesting to me, it takes me a lot longer to understand and process this information which is incredibly mentally and physically taxing. I have been fortunate to have fantastic colleagues, but sometimes it can be difficult to explain something is taking longer for me to learn or complete due my disabilities.

    1. Are there specific challenges you encounter with field or lab work that others might not be aware of?

    Something that has always been a challenge for me is the very physical nature of my discipline. I often spend long hours hunched over a sewing machine, sewing delicate elements by hand, drafting patterns, and creating diagrams along with the computer based work I do. I have suffered from chronic pain in the dominant (right) side of my body since I was a teenager and when it flares up particularly bad it makes concentrating on and completing work difficult. In addition to the physical discomfort it also takes up a lot of mental energy to execute even basic tasks. When I feel a flare up coming on I have to carefully triage my deadlines and work that needs to be completed to ensure that I don’t get too off track.

    1. What has been something that has improved accessibility or support in your workplace?

    Getting involved with my school’s Disability Resource Center has been incredibly useful for both my academic and professional careers. They have helped me identify areas where I need more supports to ensure that I have the resources needed to be successful in my work. I have also found that being more open with my supervisors and peers about my disabilities has been a huge help. I recognize that it isn’t an option or safe thing to disclose for everyone, but it has helped me better communicate where I need assistance or address issues that arise.

    1. Are there specific colleagues, researchers, or practices that have improved your experience in STEM?

    Dr. Lucy Dunne and Dr. Brad Holschuh who are co-directors of the Wearable Technology Lab have been amazing, patient, and compassionate advisors in navigating graduate school, a fellowship, and helping build my confidence and skills as a researcher. Additionally, my peers in the Wearable Technology Lab and former colleagues at Harvard have been essential to my success as a researcher. Due to the interdisciplinary nature of wearable technology they have been a wellspring of ideas, resources, and collaboration.

    1. What is something you’d like people or institutions to understand about working in STEM with a disability/mental health condition?

    Individuals with disabilities and/or mental health conditions are no less competent or intelligent than our non-disabled counterparts in STEM. While we may need more support and assistance at times than our peers, we bring an important voice to the table as well as advocate for a more equitable STEM community as a whole.

    Aly Putnam, University of Massachusetts Amherst

    Alt text: Aly Putnam smiling in a white hat and brown rainboots leaning against a rock in ankle-deep water.

    Aly is a PhD Candidate in the Organismic and Evolutionary Biology program at UMass Amherst in the Marine Global Climate Change lab with Dr. Brian Cheng. Aly's research focuses on species and habitats within the Gulf of Maine, species interactions and community composition, and how climate change is impacting our world and the species, including humans, in profound and devastating ways.

    1. Tell us about yourself and your career path.

    I am a first-generation college student and the first in my family to work in a STEM career field. I’m a current PhD Candidate in the Organismic and Evolutionary Biology program at Umass Amherst in the Marine Global Climate Change lab with Dr. Brian Cheng. I focus on species and habitats within the Gulf of Maine, species interactions and community composition, and how climate change is impacting our world and the species, including humans, in profound and devastating ways.

    While science is deeply important to me, so are people.  I believe that through engaging in research that I can share and teaching others that I have the opportunity to significantly impact the world. Not only does my research have the potential to inspire change, but engaging, inspiring, motivating, and supporting students in the process creates a web of impact that goes far beyond anything I could do alone.  

    I am also a disabled scientist with an invisible (mostly) illness called Crohn’s Disease, an inflammatory bowel disease that causes chronic inflammation of the GI tract. Crohn’s disease causes severe abdominal pain, bowel issues, weight loss, anemia due to intestinal bleeding, chronic fatigue and can lead one to be on medications such as immunosuppressants, go through surgical procedures, and increase one’s risk for colon cancer.  Many of the symptoms of Crohn’s Disease are exacerbated by stress. Pursuing doctoral work is inherently stressful, yet my passion for this work keeps me motivated and engaged.

    My career path is still unfolding, but I aspire to be a scholar, practitioner, and educator.  I am committed to working toward slowing the impact of climate change and helping to create a world that my children and their generation as well as generations to come can thrive in. I am also committed to fostering future scientists through teaching and mentoring whom many most likely will have an even greater impact than I could ever.

    1. What has your experience been like being disabled in STEM?

    The nature of my illness has forced me to recognize that which I can control and that which I cannot.  Whether I am engaged in field work or lab work, I am often at the mercy of the needs and shortcomings of my body. Both in the field and lab I am often doing work that requires focus and my attention in that moment. The nature of the pain associated with my illness is quite literally and figuratively “gut wrenching.”  While I have become quite adept at working through pain, there are times when a break to attend to it is essential. Additionally, there are times when I have an urgent need to use the bathroom and I am forced to leave what I am working on or suffer the consequences. I am not shy and have learned that I need to be open and transparent with my colleagues. They all know if I am running across the lab, down a hall, or away from my field work, that they need to get out of my way.

    People understand the urgent need to use the bathroom, but many do not understand the incredible fatigue and brain fog that comes with being unable to absorb nutrients as a result of a gastrointestinal system that is not functioning properly.  Additionally, sleep is often interrupted as a result of pain. Sometimes even the medications that help me manage the symptoms of my Crohn’s Disease cause severe side effects that impact daily life – and once almost killed me, landing me in the hospital for a week.

    When I am doing field work managing my disability becomes even more complicated.  This is particularly true because I am in fairly remote areas without any public facilities.  Until recently, this was a source of great stress and anxiety - which exacerbates my symptoms.  You may wonder why I stated, “until recently.” Well, I purchased my very own portable toilet.  It has been a game changer!! I no longer have to worry about where I am going to find a toilet if I need one.  And, whether it will be safe for me to use or not. As a person with Crohn’s Disease and because of the immunosuppressant I take to control it, I am considered a high risk individual.  As you can imagine, the COVID-19 pandemic has been quite a challenge for me.  A portable toilet has allowed me to have control and the assurance that my urgent needs will be met.

    1. Are there specific challenges you encounter with field or lab work that others might not be aware of?

    As I mentioned in a previous question, having access to bathroom facilities is really important for people with Crohn’s Disease.  Fieldwork in particular poses specific challenges in that regard.  Even with my newly acquired porta-potty, I am sometimes up to my hips in water (literally) and a bit of a hike back to my car.  It takes foresight and planning to have everything organized and accessible if I need it.  

    Another thing that is hard for people to understand is that when I am having a flare, it can take me a lot longer to get out the door in the morning due to my body’s insistence that I tend to its urgent needs.  It is helpful to have flexibility in my schedule to accommodate the unpredictability of my physical state.  Likewise, I may need additional, or longer breaks during the day when I am in a lab doing work.  

    As a person with a chronic illness, I need to access the medical system more than your average person.  I have regular procedures to which I can lose as much as two days to prep, the procedure, and recovery.  Some of my medication can only be administered in a clinical environment and requires an appointment. This medication often requires a recovery day after  as well. I need to see specialists regularly in order to maintain my health and manage my illness. These are not optional or elective procedures, but essential to my health.

    The unpredictable nature of this illness takes tremendous energy - both emotionally and physically - to manage.  I am an energetic person who gets great satisfaction from working hard and thinking deeply.  I don’t think people fully understand the level of energy I have to expend in order to maintain my own high standards and engagement.

    1. What has been something that has improved accessibility or support in your workplace?

    My own self-advocacy and willingness to be open about my illness is probably the most important and essential element to improving support and increasing access to both my education and my workplace - which as a PhD candidate are directly intertwined.  When my colleagues and those with the power in my department believe in me and do not question my needs, but accept my experience as valid, I can do my best work.  I am grateful for the number of people I can count on who fall into those categories.

    I have had professors, advisors, and colleagues who have been great supporters and have extended simple things like flexibility in deadlines or backed me up on a field project.  Finding people to help navigate the systems in which I work has been essential. 

    In addition, doctoral programs are often notoriously inflexible.  It has been helpful to me to have some flexibility in how my path is made.  Though the way doctoral students are funded is often time limited because funds are limited. People with disabilities, regardless of whether it is due to a chronic illness or another diagnosis, often need to take their journey more slowly.  This means it costs them more and they may have to do without funding for part of their program.  These issues are endemic to the systems in which we work and learn, and are often the result of other, bigger systems outside of the educational institution.  

    I designed a field work only proposal to progress my dissertation research forward safely as an immunocompromised person which was supported by UMass Graduate School who used some of its COVID funding to award “Return to Research” grants and by the Organismic and Evolutionary Biology Irwin Martin Fund.  These sorts of small grants are wonderful, actually vital, and have allowed me to have funding to design a solution to a problem that is unique to me.

    1. Are there specific colleagues, researchers, or practices that have improved your experience in STEM?

    My former master’s advisor Dr. Paulette Peckol, my PhD advisor Dr. Brian Cheng, project supervisor and dissertation committee member Dr. Michelle Staudinger, collaborator Dr. John Wares, my dear friend and collaborator Lucy Lockwood, and lab-mates and interns are an example of people who have verbally, physically, and financially expressed their support and have believed in me, enabling me to do my work successfully. 

    1. What is something you’d like people or institutions to understand about working in STEM with a disability/mental health condition?

    Thanks to years of advocacy and civil rights work by many smart people, we have come a long way in the disability rights and disability awareness arena. Still, people often equate disability with something that can be seen.  Somehow, because I look healthy most of the time, people cannot believe that I am disabled.  Once they understand that my chronic illness has a significant impact on my functional abilities, they will compare me to others with the same diagnosis.  It is important for people to understand every person experiences the impact of their diagnosis in their own unique way.  And thus, the solutions or accommodations necessary must be considered on an individual basis.  Empower the person with the disability to help identify and design the solutions that work best for them.  There is a reason that the accommodation process under the Americans with Disabilities Act is described as an “interactive process.”

    In order for people with disabilities to thrive in STEM fields, systemic issues as they relate to time and money must be addressed.  I recognize these issues are complex and require a radical rethinking of funding structures.  Yet people with disabilities are often disproportionately impacted by financial hardship and added burdens that others are not. There is often concern that if an accommodation is made for one, then it is not “fair” to others.  Equal access is not the same as equitable access.

    People are often concerned about getting too personal, but I strongly encourage people to provide an open door by asking “what” questions.  They are concrete and produce specific solutions or tangible ways to help.  For example, “What can I do to be helpful right now?” or “What do you need to meet your research deadline/data collection goal/insert issue here?”  Alternatively, sometimes it is hard for the person with a disability to share what is going on for them.  If you observe them struggling don’t be afraid to share an observation and offer help.  For example, “It looks like you are really struggling today, what can I do to lighten your load?”  Even if the offer for help is not accepted, it validates our experience and helps us be seen. Having a hidden disability is lonely and isolating.

    In our culture we have stood on a separation between the personal and professional life. This is harmful thinking and in actuality often untrue.  My illness is personal and yet it impacts my professional life.  My identity as a mother is personal, and it too, impacts my professional life.  And vice-versa.  My professional life when out of balance (which is true for any doctoral student) significantly impacts my health and my children. When we can bring our whole selves to our work and also have needs that impact our whole selves met, we are able to be more present and engage more authentically and fully in the work we have chosen and are so passionate about.

    Alexis Mobley, University of Texas MD Anderson Cancer Center UTHealth Graduate School of Biomedical Sciences

    Alt text: A professional headshot of Alexis S Mobley, M.S. She is smiling with natural makeup and a burgundy shirt with a black blazer. The background is a blue abstract art combination.

    Alexis S Mobley is a doctoral candidate in Neuroinflammation at the University of Texas MD Anderson Cancer Center UTHealth Graduate School of Biomedical Sciences. Alexis received her Bachelor’s degree in Biochemistry at Angelo State University and completed a Master’s degree in Biotechnology at Texas Tech Health Sciences Center – Abilene. Her research focuses on understanding the intersection between the immune system and age-related disorders (i.e., stroke) in the brain. She is the President, Interim Treasurer, and co-founder of Black in Immuno, an organization focused on celebrating, amplifying, and supporting Black voices in immunology. Alexis enjoys mentoring students, working on effective scientific communication, and advocating for underrepresented groups. As hobbies, Alexis likes to read, sing, play video and board games, and spend time with her family comprising her daughter and rescue dog.

    1. Tell us about yourself and your career path.

    I am a rising 6th year Ph.D. student at the University of Texas MD Anderson Cancer Center UTHealth Graduate School of Biomedical Sciences in Houston, Texas, in the Neuroscience and Immunology Programs. I study the communication between immune cells in the brain in sex differences and age-related diseases like stroke. I got my BS degree in Biochemistry at Angelo State University in San Angelo, Texas. During that time, I investigated the uniqueness of TP53 mRNA in bats and other mammals. Small bats have a 23 nucleotide insert that other mammals don’t have, which may partially explain their long lives with lack of cancer of incidence. I also earned an MS in Biotechnology from Texas Tech University Health Sciences Center in Abilene, Texas, where I identified the promiscuity of T-cell receptor-like antibodies, conjugated drugs to these antibodies, and studied their killing potential in different cancer types.

    1.     What has your experience been like being disabled in STEM?

    So even though I just recently identified with being disabled, I’ve been disabled my entire higher education journey. It has definitely been more turbulent than my non-disabled colleagues. My disabilities have ranged from chronic pain, mental health issues, and now physical disabilities. I’ve been thankful that I’ve had mostly supportive advisors, supervisors, and administrators. This allowed me to continue my education even when my disabilities made the timelines a little longer than preferred. There is a delicate balance of taking care of yourself while also meeting the expectations of the program. Without the support of those around me, I wouldn’t have been able to do the work I’ve completed thus far.

    1.     Are there specific challenges you encounter with field or lab work that others might not be aware of?

    I have learned throughout my journey that people have preconceived notions of your diagnosis. There is a lack of understanding that even with a specific disease, it will present differently from person to person, and everyone will handle their conditions in different ways. Because I don’t fit the idea of someone with my conditions, there have occasionally been allegations that I’m faking my disability, even though I’m masking when around supervisors and people in power. Being around my friends and family, I let that mask down because I know I’m safer to be my disabled self around them. If people only get their information from second-hand sources and not directly from the disability community, they will continue to uphold ableist systems and discriminate against disabled people.

    1.     What has been something that has improved accessibility or support in your workplace?

    A hill I’ll die on: everyone deserves electronic pipettes. They have saved my body in more ways than one. I’ve been able to get work done quickly without hurting myself. I also support carts and open labs. Carts help people easily move supplies around, and open labs provide the space I need to navigate with my walker.

    Moreover, I have been appreciative of video conferences and hybrid events. Even when I’m not feeling my best, I can still participate in events without the extra stresses of traveling or securing childcare. I have attended classes, conferences, and meetings from the comfort of my home wrapped in my heating pads, my medications close, and the necessary materials I need to keep myself safe and healthy. There are still ways to go with accessible video conferencing (like accurate captioning and American Sign Language interpreters at all events), but this is a significant start for many disabled people.

    1.     Are there specific colleagues, researchers, or practices that have improved your experience in STEM?

    Having a supportive 504 disability office has also been life-changing. I have only applied for formal accommodations during my doctoral degree. The accountability of the office, the constant updates and communication, and the friendliness of the office helped me understand that I’m not a burden to the graduate school but an important asset that deserves the education and training conferred by the school. I am forever grateful because my story is unique compared to others. My colleagues are my friends, and they have been more than happy to check in on me, bring me food, pick me up, and continue to speak up for me in hostile environments. Disabled people need solid, steadfast sponsors for them. We can’t always be in the room when things are said or have the energy to advocate for ourselves. Not all of us are out with our conditions—advocate for those that can’t.

    1.     What is something you’d like people or institutions to understand about working in STEM with a disability/mental health condition?

    We are still brilliant scientists. We are still outstanding workers. We are still people that demand and require compassion. Stop infantilizing us. We just need help accessing the information or spaces around us, and that’s okay. Moreover, the more accessible your spaces are, the more efficient and welcoming an environment will be. Disabled people have been asking for things like working from home and video conferencing for ages. But once everyone was subjected to it, that’s when people saw the benefits. Disabled people have excellent ideas to help not only their productivity but also the productivity of others. Invest in accessible spaces. Help remove the burden of requesting accommodations when you can just provide them. Continue to remove barriers for everyone so that we can advance our work together with a universal front.

    Eduardo Cruz, California State University, San Bernardino

    Alt text: Eduardo wearing a black wide-brimmed hat and smiling against a blue sky and trees.

    Eduardo Luis Cruz is a Master's candidate at California State University, San Bernardino, working with Dr. Lua Lopez focusing on the Invasion Biology and Evolutionary Ecology of the invasive plant Carpobrotus edulis. He completed his undergraduate work at CSUSB earning a Bachelor of Science in Biology with a focus in Ecology and Evolution.  Eduardo was also a transfer student from a community college, College of the Desert, where he earned Associates of Science Degrees in both Biology and Chemistry.

    1. Tell us about yourself and your career path.

    My career, as well as much of my philosophy and motivations, can be encapsulated with the phrase Por el amor de la educación científica, which roughly translates into "For the love of science education." A bit about myself personally, I am a child of Mexican immigrants and was raised east of Palm Springs in the beautiful agricultural areas of the Coachella Valley. Being Autistic, Bisexual, and Latino has shaped many of my experiences, choices, and career path in STEM. As such, I hope to teach at my community college alma mater, with the hopes that my experiences in STEM can help serve the varied communities I belong to.    

    1. What has your experience been like being disabled in STEM?

    It has been challenging, even overwhelming at times. Navigating STEM while struggling with Autism, is also compounded by battling the stigmas associated with Autism. STEM careers can be unforgiving, especially as there is often an expectation to "rise to the challenge" when faced with adversity.  This messaging in a sense communicates that disabled persons must find a way to overcome their disabilities to be successful in STEM spaces. Growing up in a time before Autism had awareness campaigns, there was an immense pressure to conform, and be as normal as possible, or neurotypical. Because of my early experiences with Autism, I have a much higher tolerance for “masking”, which is a way of blending in, by suppressing specific behaviors. As I progressed in my career this has resulted in being present for conversations regarding the “difficult nature” of making necessary accommodations for disabled persons. Or that best practices include asking for the minimum accommodations necessary to ensure flexibility. These ideas can be incredibly exclusionary to persons with disabilities, as a lack of enthusiastic acceptance and preconceived expectations about persons with disabilities, can easily make those spaces not only inaccessible but hostile. I had once chosen to mask in those spaces, though now I prefer to try and actively champion visibility in those spaces, recognizing the importance of representation in STEM fields.    

    1. Are there specific challenges you encounter with field or lab work that others might not be aware of?

    Yes. The greatest challenges I contend with are social interaction and sensory processing, which can be difficult in both lab and field settings. General conversation, especially one on one, presents a unique challenge in the context of lab and fieldwork as they are important for establishing relationships with colleagues and researchers. However, I require many conversations with someone to build a repertoire of conversational directions. The lack of open and fluid conversation can lead to the impression that I am uninterested and averse to interacting with others, which is far from the case! Additionally, sensory processing difficulties can exacerbate these situations by adding layers of discomfort and at times pain to these interactions. Sensitivity to bright light and difficulties with audio filtering can make both lab and fieldwork alone disorienting, especially when trying to maintain a conversation. Lab spaces tend to be incredibly bright, and sometimes loud, which can make focusing on specific tasks exhausting. Fieldwork can be more forgiving in this regard as dark protective eyewear and noise-canceling audio equipment are less problematic than in lab spaces.   

    1. What has been something that has improved accessibility or support in your workplace?

    Awareness! I started later than most when entering my STEM career path. My first foray into higher education was in 2001 when awareness regarding Autism and other neurodivergent disabilities was almost non-existent. Now, however, neuro-divergent awareness has made the general understanding of specific disabilities more mainstream. There is much more awareness with respect to Autism, not just in academia but in the entertainment and other media as well. This has broken down many barriers that existed when I first attempted entry into STEM. With respect to my Graduate program and the Biology Dept at CSUSB, I am tempted to call myself fortunate to be in such supportive spaces. But that feels as though I would be detracting from the conscious inclusivity created by the Dept.

    I would however like to focus part of my answer on experience working as a teaching assistant and my own experience as an undergraduate. Working in the Biology Dept I am always moved when Professors openly encourage students with disabilities to contact them regarding needs for the class. I can’t stress enough the importance of actively engaging with students that are communicating their needs. This can include small distinctions in language. When discussing the time constraints of examinations, I choose to use phrases such as an appropriate amount of time instead of extra or more time. Recognizing that those distinctions can be crucial in setting the tone for how accommodations are perceived by students requesting them. The implications of words like “extra” or “more” have the potential to make disabled students feel as if they are asking for something additional, rather than acknowledging their acceptance into a STEM space. Small ideas such as these can go a long way in cementing the idea of belonging and acceptance rather than simply being accommodated.

    As a researcher, a transformational development during this pandemic has been the transition to digital attendance for research symposiums and conferences. While many have lamented the loss of in-person attendance, I have had the opportunity to attend conferences without the stress of managing the space at conferences. This pandemic has allowed us to develop digital infrastructure to accommodate hundreds of attendees who normally would have abstained. My difficulties with light sensitivity, audio filtering, and personal communication are more easily managed when attending a presentation or talk via Zoom. This format also has the added benefit of developing initial relationships with researchers and collaborators being buffered by a digital medium. This makes future in-person communication easier to manage as the difficult social groundwork has already been laid. This platform has been transformational not just for the disabled, but for many other underrepresented communities.   

    1. Are there specific colleagues, researchers, or practices that have improved your experience in STEM?

    There are many! The primary Investigator for my Lab, Dr. Lua Lopez has been instrumental in my success as a graduate student and my experience as a graduate researcher in STEM. She has at every step in my journey been supportive and understanding, creating an open and inviting academic atmosphere. Similarly, during my Undergraduate career at CSUSB Alyssa Bradley, Dr. James Ferrari, with whom I researched organophosphate insecticide resistance in Culex quinquefasciatus, Dr. Anthony Metcalf, and Dr. Daniel Nickerson, provided resources, mentorship, support, and understanding during my difficult transition to a 4-year university. At College of the Desert, Dr. Alexa Sawa, with whom I did research for the Genomics Education Partnership, was the first person in my STEM career to whom I felt comfortable disclosing my disability. She was immensely supportive and encouraging of my pursuit of a graduate degree and aspirations to be a STEM educator, as were Dr. Carl Farmer, Hilary McKay, Efrain Perez, and Matthew Jackson of the Mathematics, Engineering, Science Achievement (MESA) Program at College of the Desert. As a first-generation disabled student support navigating higher education and STEM specifically can be noticeably absent. However, through their work with the MESA program, they fostered an environment and community that made a career in STEM seem perfectly reasonable for someone with Autism. Dr. Farmer and the MESA Program provided a place wherein I first began to believe that I could have a career in STEM.     

    1. What is something you’d like people or institutions to understand about working in STEM with a disability/mental health condition?

    First, I think that we are capable of contributing as much if not more to the many fields in STEM. That while there have been many strides in awareness and inclusion, there are many more that can be taken. That rather than reacting to the needs of disabled persons in STEM spaces, accommodations in those spaces should be present before you need them. Again, communicating the idea that we belong in these spaces, rather than having to be accommodated. Having programs and spaces dedicated to supporting persons with disabilities/mental health conditions is important. Also, that those resources be tailored to the broader needs of those communities. Institutions should be in a position to direct people to their existing resources, rather than scramble to find ways to accommodate them. That inclusivity should mean more than having the minimum accommodations needed for ADA compliance, but instead should be thought of as a means of cultivating robust and diverse scientific thought.  

    Sara Middleton, University of Oxford

    Alt text: Sara Middleton smiling in front of greenery wearing a colorful blazer and green earrings.

    Sara is a PhD candidate in plant ecology at the University of Oxford in the Department of Zoology and Plant Sciences Department, supervised by Prof Andy Hector. Her research looks at using trait-based approaches to better understand how a UK grassland community responds to drought treatment. Her background is in environmental sciences, with a bachelors from Oxford Brookes University and a masters from Imperial College London. When Sara is not at her desk or in the field, she works on a number of diversity, equality and inclusion (DEI) initiatives and science communication projects. She also enjoys hiking, photography and cooking. 

    1. Tell us about yourself and your career path.

    I have scripts ready to recite when asked about myself around new people. Depending on my audience and/or how much energy I have, I will answer anywhere from PhD student to plant functional ecologist to poker of plants. It is perhaps one of the hardest statements for me to address in full, as I have a complex web of interests and typically only share a small slice of who I am. I am a plant scientist, a science communicator, DEI advocate, intersectional environmentalist, filmmaker, photographer and poet. Like a plant-fungal mutualistic relationship, my research (plants) and my other interests (fungal network) are integral to who I am as a person and each aspect feeds into how I conduct and communicate my science. My interests stem from a strong connection with nature, one I have fostered since I was a young. Despite growing up with limited access to green spaces, I made the most of the green time I had. I played in the local park, searched for spiders and other minibeasts and climbed trees.  

    My career path thus far mimics that of a meandering vine more than a upright bamboo shoot. Doing a degree in environmental sciences seemed like the logical step to nurture my interest in the natural environment and solving the climate crisis. Unfortunately, my final high school exam grades were low (due to my undiagnosed neurodivergence). I ended up taking a year out to work in a school and applied for various undergraduate programs. Despite multiple rejections, I managed to get into Oxford Brookes University to study! My time there changed my life: I discovered my love of plants and I received a formal diagnosis of dyslexia. This diagnosis helped change how I saw myself and my approach to learning. After my bachelors, I took a year out to work and save up for graduate study. My masters at Imperial College London allowed me to delve deeper into my passion for plants, examining the changes in distribution of UK invasive plant species due to climate change. 

    Two degrees, three gap years and a handful of diagnoses later, I am now a PhD candidate at the University of Oxford in the Department of Zoology and Plant Sciences Department. My research looks at how a grassland community responds to an experimental drought treatment using trait-based approaches. Outside my research, I am a keen science communicator, particularly in tackling plant awareness disparity. I also work on a number of DEI initiatives such as the BIPOC STEM Network I cofounded at Oxford, which aims to support and promote the work of people of colour in STEM at Oxford. My science career is only just taking root, but I aspire to weave my lived experiences and multiplicity of interests and skills to create greater harmony between all living beings (plants and people included).  

      2. What has your experience been like being disabled in STEM?

    Challenging. I am not just navigating STEM as a disabled person but also as a Black woman. I am both visible and invisible at the same time. I often stand out as often the only Black face in seminars or conferences, but my disabilities are largely invisible. For years I subconsciously hid my disabilities from my colleagues, for fear of being seen as a less capable scientist. It is only recently that I openly discuss my disabilities. I do this to break down my internalised ableism and to address the social stigma around being a disabled scientist. I have complex post-traumatic stress disorder (cPTSD), endometriosis and an autoimmune condition which impacts my joints and causes brain fog and fatigue. I am also considered neurodivergent with dyslexia, ADHD and autism. 

    Academic spaces, as with wider society, are built for able-bodied neurotypical people. Due to a general lack of awareness and misinformation about my needs, academic workspaces are often ableist. I have had my requests for accommodations such as extra time for assignments or alternative ways of engaging in group activities repeatedly trivialised and denied. Repeated exclusionary experiences cause destress, burnout and divert time away from doing research, whilst also making me question whether I belong in science. 

    I am coming out of an 18-month burnout period, which has been tough. There have been days where I was unable to get out of bed, let alone run a chunk of code or answer a work email. Knowing that emotional stress is the trigger for my autoimmune condition and autistic meltdowns has been helpful. However, a PhD is not exactly stress-free so life can be difficult. I am now prioritising self-care, working on being more confident, at saying no, knowing my physical and mental limits and learning what things I can and cannot control. 

      3. Are there specific challenges you encounter with field or lab work that others might not be aware of?

    The two main challenges I have navigating academic spaces is communicating with other (neurotypical) people and the dynamic nature of my disabilities. Being autistic, face-to-face interactions are energy intensive. I struggle to understand people’s intentions and expectations unless clearly stated, as I take things literally and cannot always decode facial expressions. Communicating my thoughts is equally challenging. My brain processes and stores ideas in a web, pulling disparate data points together in the form of colours, shapes, textures and even multiple dimensions. Quickly translating my ideas in a linear and digestible way for neurotypical people to understand is difficult.  

    During the PhD journey there are certain expectations and milestones you have to meet in order to successfully finish your degree. The dynamic and unpredictable nature of my disability makes meeting these goals challenging, due to shifts in productivity levels. The pandemic has added an extra layer of hardship, as we have had to rearrange how we meet and do our research. For me, video online meetings are even more energy intensive, as I find it even harder to decode facial expressions and understand social cues than in person. As a neurodivergent person, regulating and preventing sensory overload is a full-time job. I like to re-charge in nature and before COVID I would often swim. Lockdowns, however, have restricted my access to some of my favourite nature spaces and the pool. 

      4. What has been something that has improved accessibility or support in your workplace?

    Being more open and advocating for my needs as a disabled person, not just to survive but to thrive. Colleagues that have raised inaccessibility issues on my behalf in a number of DEI committee meetings have helped me greatly. Having allies who listen and show and act with compassion has lessened the burden for me.

      5. Are there specific colleagues, researchers, or practices that have improved your experience in STEM?

    Probably one of the most positive experiences I have had was with some of my colleagues that I met on the Plant Function Trait Course in Peru in 2020. We were collaborating on a number of papers and during meetings they were flexible, accommodating of my needs and took on board my comments about making the figures more accessible. 
    With seminars and conferences still largely virtual, I really value session chairs that enable live captions and also provide multiple ways to engage with the sessions (e.g. writing questions in chat box or anonymous polls). 

      6. What is something you’d like people or institutions to understand about working in STEM with a disability/neurodiversity/mental health condition?

    Being disabled does not make a person any less of a scientist. Actively listen to your students and/or peers if they disclose their disabilities to you, as they have entrusted you with sharing this important part about themselves. If you are in a position of power and a disabled person asks for accommodations, give it to them. Learn to recognise that disabilities are unique and dynamic. Ultimately, we should strive for universal design, of both our workspaces and pedagogy, as this gives everybody the best chance to fully be themselves and blossom in science. 

     

    Katie Davis, University of York

    Alt text: Dr Katie Davis wearing sunglasses and crouching down holding a thorny devil lizard

    Dr Katie Davis is a lecturer in palaeobiology at the University of York and an editorial board member of Communications Biology. She has an undergraduate degree in Geology (Hons) from the University of Edinburgh, a masters in Palaeobiology from the University of Bristol and a PhD in Phylogenetics & Evolutionary Biology from the University of Glasgow. She has held post-doctoral positions at the University of Bath and the University of York. She has a lot of research interests but the common thread is a desire to understand the processes, both biotic and abiotic, that shaped the astonishing biodiversity we see on Earth today. She thinks that the importance of a good work-life balance is vastly under-appreciated and when not working loves to be outdoors as much as possible. She loves all things nature and natural history but is also an amateur artist and yoga practitioner.

    1. Tell us about yourself and your career path.

    I’m an evolutionary palaeobiologist and my research is driven by a desire to understand the patterns and processes that have shaped the evolution of life on Earth. I’ve arrived at my present position via something of a non-standard career path and, being completely honest, I like to talk about it whenever the opportunity presents itself because I think it's important to know that there isn't just one route to success. I started out on a fairly standard path, doing my undergraduate degree in Geology at the University of Edinburgh, followed by a masters in Palaeobiology at the University of Bristol, then a PhD in Evolutionary Biology at the University of Glasgow. At the end of my PhD I was feeling a bit burnt out (with hindsight I can recognise that my chronic health condition was starting to cause issues but more on that later) so I decided to leave academia and spent the next four years working in a variety of non-research roles. Taking a career break turned out to be a really positive thing, it gave me a different perspective and when I did eventually return to research I was absolutely confident that it was the right career for me and even now, that different perspective is really valuable in my day to day life.

    Even on my return to research I did things in a non-standard way. Most people apply for advertised post-doc positions but I had a research idea that I really wanted to pursue so I wrote my own grant with Professor Matt Wills at the University of Bath. Matt was a huge support for me and I'm still really grateful to him for believing in me and giving me the opportunity to return to academia. We were very fortunate that the grant was funded by BBSRC the first time and I had a really enjoyable four years at the University of Bath before moving to the University of York in 2016. And when I moved to York I did the same thing, I wrote my own grant with Dr Peter Mayhew and was fortunate to be able to continue to pursue my own research interests here at York. I'm now a lecturer in palaeobiology and while I still love research, I also absolutely love the teaching. The students are genuinely fantastic and it's so rewarding seeing them develop their skills and grow in confidence. Maybe I'll even inspire a few to pursue careers in palaeontology!

    On a more sombre note, and because it’s relevant to this interview, I am still yet to have secured a permanent position and I worry every day that my career could still grind to a halt before it really gets going, especially as I work part-time due to disability and I worry that this will make me less desirable as an employee.

    1. What has your experience been like being disabled in STEM?

    I’m in a bit of a strange position in that, while I have a genetic condition and have suffered with it my entire life, I didn’t know I had it until I was finally diagnosed at the age of 34. I’d spent my entire life up to that point with an awareness that I didn’t experience life in the same way that most people appeared to but I mostly seemed to get by, although everything was that bit harder and I always had a vague feeling that I wasn’t really fulfilling my potential as I was always experiencing some sort of pain and I always ran out of energy before I’d had the opportunity to put all my ideas into action. Finally getting a diagnosis was a huge relief, knowing that my physical struggles and inability to work the long hours that seemed to be expected was not my fault lifted a burden I didn’t even know I’d been carrying.

    It turned out that I have the hypermobile form of Ehlers-Danlos syndrome (hEDS), which is a collagen disorder. It affects every part of the body but for me the most debilitating symptom is chronic fatigue, followed closely by the chronic pain that results from daily joint dislocations and subluxations. Chronic fatigue is very poorly understood by most people. It’s not tiredness and it’s not feeling sleepy. It’s an overwhelming, and often complete, absence of energy. The closest thing I can compare it to is the crippling exhaustion experienced during a bout of Influenza, but even that is a somewhat unsatisfactory comparison. The fatigue itself is both physical and mental, it’s like all your physical and mental processes are wading through treacle. This impact on cognition is often referred to as “brain fog” and is enormously debilitating. The only “cure” (a complete misnomer as it’s not cured, the symptoms are just relieved until the next time) is complete rest and sometimes that’s not possible so I keep pushing through, using adrenaline and caffeine to keep going, but then the fatigue rebounds 10 times as bad and can leave me bed-ridden for days while I recover. Yet while all this is ongoing I look perfectly well and others have often expressed doubt that I am genuinely ill. This is because hEDS is an invisible disability and, in many ways, this is perhaps the hardest part for me of being disabled in STEM as people are often doubtful that it is really “that bad” and therefore can be reluctant to make the accommodations I need to manage my condition. Alternatively, people hear the words “brain fog” or “cognitive dysfunction” and immediately assume that I’m intellectually not good enough to be in academia. I’ve been written off for this reason more times than I care to recall, yet my brain works just fine, it’s just that I have different limits to most people. Given some flexibility and understanding, there’s no reason why I can’t participate in university life in exactly the same way as everyone else, yet there is often very little consideration given to accessibility needs.

    Although I don’t really want to focus on negatives I’d like to share a particular experience aimed at others who might be dealing with chronic conditions/disability. The biggest mistake I've ever made was ignoring my symptoms and trying to keep going. With hindsight I can see that I should have been working part-time a long time ago, probably from my PhD onwards if I’m completely honest with myself. And it has done me no favours whatsoever, there are no medals awarded for suffering in silence. I finally went part-time two years ago and I’m still trying to work out the optimum number of hours and ways of working to manage my condition though things are definitely starting to improve. Sadly though, I’ve now missed out on fellowship opportunities because I have too many years of experience (on paper at least) and disability is not taken into account for eligibility unless there has been a period of absence/part-time working. So if you recognise yourself when reading this, be honest with yourself about what you need. It might be hard in the short-term, as it’s tightly interwoven with the roller coaster emotions that accompany acceptance of limitations, but I promise that it’ll be worth it in the end.

    1. Are there specific colleagues, researchers, or practices that have improved your experience in STEM?

    Much of what I’ve written so far seems to be of a negative slant, and I think that’s inevitable to some extent as I’m trying to give an honest account and I can’t honestly say that being disabled in academia has been a positive experience. Yet I am happy to say that while there are endemic issues in academia surrounding awareness and understanding of disability, many of my colleagues and collaborators are very understanding and make a genuine effort to be mindful that everyone is different and that what works for them doesn’t necessarily work for everyone. And that’s actually the key thing, while we do also need structural changes, each and every person can still make a big difference by simply being understanding and accepting of others for who and what they are (and what they can or can’t do) without judgement. No, academia wasn’t designed for people like me, but we can change that if enough people want to make it happen.

    At the department level it was a big relief to me that my current employer made all the adjustments I needed for my office within a very short period of time and without any fuss or hassle. It really did make all the difference to me and made the stress of starting a new job, and therefore needing to disclose my disability, so much easier.

    1. What is something you’d like people or institutions to understand about working in STEM with a disability/mental health condition?

    First of all, a combination of flexibility, communication and forward planning goes a long way in enabling us to plan and manage our time/energy. This can be as simple as sharing the timetable for a workshop well in advance or making sure that seminar invitations or requests for help are sent out with more than the bare minimum amount of notice. The second thing is to let us make our own decisions about our limits and equally, listen to us when we tell you what we need. Saying no can be difficult, and I think that’s true for everyone, but let us choose when to say no, don’t withhold opportunities because you’ve decided it’s too much for us. We know our limits better than anyone and it’s not for other people to infantilize us and make those decisions on our behalf. Also, believe us. I’ve lost count of the number of times I’ve said to someone  “I’ll have to do X in Y way, Z way is not going to be possible for me”. And rather than let me get on with it they tell me “oh you’ll be fine doing it like X, I always do it like X!”. It’s hard for me to speak up and admit that I can’t do things like you, it’s doubly hard to then have to convince you of that fact.

    To finish on a positive note I’d just like to sum this up by saying that genuine cognitive diversity is a wonderful thing so don’t write us off because we’re not exactly like you. You might just be surprised by what we can bring to the table given some really rather minor adjustments, a little consideration and a willingness to challenge people’s biases, prejudices and misconceptions of what is needed to be a successful scientist.

    Banner image alt text: Disability Pride Flag, designed by Ann Magill. CC0. A charcoal grey/almost-black flag crossed diagonally from top left to bottom right by a “lightning bolt” band divided into parallel stripes of five colors: light blue, yellow, white, red, and green. There are narrow bands of the same black between the colors. 

    Caitlin Karniski

    Associate Editor, Communications Biology