Q&A: Why discuss disability in the geosciences?
Compared to the 26% of the U.S. adult population with a disability, only 11% of undergraduate and 7% of graduate students with a disability are pursuing STEM majors in the U.S.
Stanford Earth transitioned the Office of Multicultural Affairs (OMA) into its Diversity, Equity, and Inclusion (DEI) initiative in 2020. As part of an effort to celebrate and discuss identity, four Stanford Earth community members talk about how disability, neurodivergence, and chronic illness have informed and impacted their careers.
"Dealing with disability and figuring out how to best manage it played a big part in my time at Stanford,” said Roy Perkins, Earth systems BS ’20, who wears prosthetics on both legs. “I am very independent, and I knew going to college is a big transition for everybody, so I didn’t really connect the dots between the extra time and energy I spent on certain things like showering with the struggle of being a student and full-time athlete. I gradually made more accommodation requests to the Office of Accessible Education which eliminated a lot of my mobility issues and helped me to become a better student as well.”
What is disability?
More than 26% of adults in the United States, or 61 million people, have some kind of documented disability. In the world, it’s estimated that one-fifth of the global population, or between 110 million and 190 million people, experience significant disabilities.
The Americans with Disabilities Act (ADA), which passed in July 1990, defines disability as “a physical or mental impairment that substantially limits one or more major life activities.” While the ADA does not specifically name all of the conditions that are covered, many covered disabilities can affect a person’s vision, movement, bodily function, thinking, remembering, learning, communicating, hearing, and/or mental health. Some of these conditions may be more visible, while others may be less apparent.
People can experience disability in many ways – they may show neurodivergent traits like autism or ADHD; use an assistive device like a wheelchair, cane, or a hearing aid; have experienced an injury; have a chronic illness or condition; or have a mental health condition. Disability may grow progressively worse, remain static, or affect an individual intermittently throughout their life. As a result, people with disabilities have widely varied experiences and potential needs for accommodation.
Disability in academia
Compared to the 26% of the U.S. adult population with a disability, only 11% of undergraduate and 7% of graduate students with a documented disability are pursuing STEM majors in the U.S. This may mean that students with disabilities are less likely to enroll in STEM fields or are underreporting their disabilities to avoid stigmatization.
When going into the workforce, only 4.8% of graduating students entering STEM careers self-disclose their disabilities. Concerns about stigma extend to the professoriate as well. Some U.S. faculty members say stigma prevents them from being open about their conditions, and that the pathway to academia may not encourage retention for those with disabilities.
For students who exhibit neurodiversity, including traits like ADHD, autism, or dyslexia, having customized learning opportunities in the classroom can be critical to a successful educational experience. For example, approximately 25% of college students who receive disabilities services are diagnosed with ADHD, making that the most common type of disability supported by college disability offices. In this 2021 study, researchers found that college students with ADHD frequently received grades half a grade below their peers across all four years, and that college students with ADHD were significantly less likely to stay enrolled across semesters. Among the top indicators that might predict academic success for students with ADHD was having received academic support and accommodations throughout high school and college.
Disability in the field
Physical barriers to geoscience learning can exist in the field – from remote field excursions with uneven terrain, unusually long or strenuous travel expectations, inflexible transport options, lack of restrooms, or lack of accessible learning tools or connectivity. These roadblocks are also found on campuses – through inaccessible labs, hidden ramps, broken elevators, poorly designed displays, or weak color contrast.
However, many of the barriers in place are a result of the perceptions that some geoscientists have about disability. Commonly held stereotypes about who a geoscientist is, as well as biases about what those with disabilities can or cannot do, give the impression that certain physical abilities are a prerequisite to being a geoscientist. Biased employers or advisors may opt not to select persons with a disability for roles or invite them to field excursions because of perceived barriers.
Other barriers to inclusive fieldwork may be institutional. Inflexible policies on transportation or accommodations, lack of funding for learning tools like interpreters, failure to provide medical professionals, reluctance to complete additional paperwork, or lab restrictions related to disability are all examples of institutional obstacles and discrimination that may be in place.
As fieldwork is considered integral to a geoscience education, disability rights advocates have long pushed for improved accommodations in field and other physical learning opportunities. In 2020, the global pandemic highlighted the issue of field accessibility, driving a shift toward virtual field learning and extended use of visualization tools like Google Earth, remote sensing resources, drone imagery, and ultrahigh-resolution photography. At Stanford Earth, faculty and staff have worked to broaden participation in field-based science through virtual field trips. View the full collection of Stanford Earth Virtual Field Trips.
Shifting the narrative
The stereotype of the able-bodied geoscientist works to exclude students with visible disabilities, and it may also show students with less noticeable disabilities that they aren’t welcome either.
Nearly one in five Americans will experience a mental illness in a given year, and some of these individuals may classify as disabled. Adults with disabilities report mental health distress nearly five times more often than non-disabled people do. In 2018, an estimated 17.4 million adults with disabilities experienced frequent mental distress associated with limitations in daily life, increased use of health services, poor health behaviors, and chronic illness.
Individuals with less visible disabilities may experience increased fatigue and pain that impacts their performance and that causes them to feel the pressure to prove the validity of their disability to their supervisors and colleagues who don’t recognize their disability. Conversely, individuals with less visible disabilities may also choose not to disclose their conditions because of the stigma associated with disability that can be detrimental to their careers.
Looking beyond what is legally required by the ADA, institutions can use the Universal Design for Learning guidelines to optimize teaching and learning based on scientific insights into how people learn, whether they have more or or less obvious disabilities.
For Stanford community members hoping to learn more, good places to begin are the Stanford Office of Accessible Education, the Stanford Office of Digital Accessibility, the Stanford Disability Initiative, and Stanford Counseling & Psychological Services (CAPS).
Stanford Earth transitioned the Office of Multicultural Affairs (OMA) into its Diversity, Equity, and Inclusion (DEI) initiative in 2020. As part of an effort to celebrate and discuss identity, four Stanford Earth community members talk about how disability, neurodivergence, and chronic illness have informed and impacted their careers. Stanford Earth’s Assistant Director of DEI Isabel Carrera Zamanillo; MS student Sabrina Tecklenburg; and alumni Roy Perkins, BS ’20, and Bliss Temple, BA ’04, BS ’04, discuss their hopes for the future of diversity and inclusion in the geosciences.
How would you describe your identity?
CARRERA ZAMANILLO: I am a Mexican woman, born and raised in Mexico City. I’ve been diagnosed with dysautonomia, fibromyalgia, and chronic depression. For me, how I am feeling and how I see myself is constantly in flux. Something I have learned from my chronic condition is that humans are constantly transforming; therefore the idea of intersectionality is so important to reflect the richness of the multiple identities of a person at any point in their lives.
PERKINS: I am a congenital quadruple amputee (below knee and elbow).
TECKLENBURG: I am a white woman and I have ADHD and anxiety. I wasn’t diagnosed with ADHD until the year after I graduated from undergrad, when I was 22.
TEMPLE: I am a white cisgendered woman who uses a wheelchair.
Share a formative experience related to your experiences with disability.
PERKINS: Dealing with disability and figuring out how to best manage it played a big part in my time at Stanford. I wear prosthetics on both legs, which can complicate things like showering, walking around campus, or having enough living space to take them off. I started off in undergrad dorms and all of those complications made things a lot more difficult in shared spaces. I am very independent, and I knew going to college is a big transition for everybody, so I didn’t really connect the dots between the extra time and energy I spent on certain things like showering with the struggle of being a student and full-time athlete. After taking time off school to train full time as a Paralympian swimmer, I gradually made more accommodation requests to the Office of Accessible Education which eliminated a lot of my mobility issues and helped me become a better student as well.
CARRERA ZAMANILLO: My life started to change when I was 14 years old. It started with intolerance to cold and swollen hands but eventually led to frequent dizziness, constant pain and fatigue, countless pills, and even a cardiac arrest at one point. Years of navigating through different medical offices and hospitals resulted in a series of diagnoses: dysautonomia, fibromyalgia, and chronic depression. As an undergraduate student, I had to adapt to a world that isn’t welcoming to people with chronic conditions. I could not go on field trips without additional support or work in labs due to chemical and light sensitivity. How could I become a biologist if I could not do the normal work of one? I felt inadequate and the constant hospital visits were an obstacle – it took me six years to complete my undergraduate degree. Before moving to the U.S. I did not see myself as a disabled person, because in Mexico it’s considered politically incorrect to refer to someone as disabled. It was really when I started my PhD in the United States and I got more involved in diversity, equity, and inclusion topics in higher education that I understood that I was “disabled.” I started to understand that disclosing my conditions could threaten potential professional opportunities, that there quite a lot of people with hidden disabilities who fear stigmatization, that the construct of normalcy or ableism exacerbates oppression, and that we need to recognize the many abilities that people with disabilities develop in order to function in a world that does not incorporate universal design.
TEMPLE: The first time I traveled abroad since I’d acquired my disability at age 15 was an exchange program in Mexico the summer before college. We visited the Temple of the Sun at Teotihuacán and I decided that I would climb the pyramid. Rehabilitation had prepared me to move myself from my wheelchair to my bed, but not necessarily to climb 250 steep and inconsistent steps. It took five hours to crawl up. When I got to the top, there was this amazing view and I thought, “All right, I did it – but I’ll never choose to do that again.” I realized then that if there’s a physical thing I want to do, I will most likely be able to do it in some way with some creativity and persistence, but also that I don’t have to climb mountains just because they’re there. That experience left me with a sense of confidence in my physical abilities and especially my problem-solving skills, but it also was the first time where I articulated to myself that I don’t need to pick the hardest thing and do it just to prove that a person with a disability can. It’s important to me to pursue what interests me as a human, whether or not it involves surmounting obstacles, physical or otherwise. My disability is inherent to me. I can’t overcome it and I don’t need or want to.
TECKLENBURG: A pivotal moment for me was just realizing that I could have ADHD – that there was a reason and a name for many of my struggles and that it was something that could be managed. I was working as a research assistant in Stanford Earth between undergrad and grad school and I stumbled on a podcast episode titled “Women and ADHD” – I think the podcast was Stuff Mom Never Told You. It had never occurred to me that I might have ADHD, because I had never heard that it can appear differently in women; for example, women may not outwardly appear as hyperactive because many have learned to internalize their hyperactivity, and it can often be misdiagnosed as anxiety and/or depression. I decided to seek out a psychiatrist and it still took a long time to work out what medications and dosages worked for me, but realizing that my struggles weren’t just personal failures really helped me start to be kinder to myself.
Do you feel like disability is discussed openly in your field and at Stanford?
CARRERA ZAMANILLO: Hidden disabilities are still a taboo topic in most scientific and academic settings. There is more awareness around visible disabilities or forms of neurodiversity. However, chronic and mental conditions are still stigmatized because there is a general perception that people like me cannot perform at the same rate. This is a very simplistic perspective that reflects a blind spot and different forms of privilege. Those of us who live with any form of hidden disabilities are forced to become more resourceful and resilient. People with disabilities, especially hidden ones, often work at much harder paces in order to maintain productivity for fear of inadequacy and job security. It goes without saying that this can cause further detriment to our health. If we could create more welcoming environments, where talking about health and wellness issues is considered normal, then more resources would become available and hopefully these stigmas would diminish. The fact that we have to navigate through unclear systems to find advocates and resources to obtain accommodations is preposterous.
TECKLENBURG: Amongst graduate students, it is more common to talk about mental health issues, but as a whole I don’t think we discuss disability enough – especially the ways disability intersects with other identities. A lot of the work of finding solutions for accommodations or aid is left to the person who’s already struggling with their disability and/or mental health, but when you’re struggling it’s that much harder to know what you need or why you’re feeling a certain way. I’m very grateful to the professors and mentors and administrators who have been patient with me, but think I was lucky to have that reaction. It shouldn’t come down to how lucky someone is with their environment, especially when many things that we call luck can be attributed to privilege.
TEMPLE: I think it really varies from context to context, in and out of Stanford and in my professional world. I fundamentally felt very at home and supported in Earth Systems – I didn’t feel I had to fight to be there – and had a great experience there. In order to participate in field programs or lab work, there was a lot of problem solving that my advisors/teachers and I had to do, but in Earth Systems, there was no question of whether I would be included, it was just a matter of how to make it happen. It gave me confidence I could find ways to solve problems and communicate about my abilities, and a strong foundation for figuring out how I was going to navigate becoming a doctor. As I was finishing up, my advisors and other faculty in Earth Systems were so clear that I had something important to offer and that they expected I would be able to succeed in medical school. Those supportive relationships, for me, were really helpful because there had not been many relatable role models for me in medicine – I was the first person with an obvious or identified disability that went to my medical program – and at the beginning I did not find my medical faculty to be universally supportive. I think disability is commonly discussed in the medical world, but still very uncommonly as it relates to doctors and other professionals rather than patients.
PERKINS: I am a volunteer coach with Parasport Spokane, a disability athletics group, and a board member of the Right to Walk Foundation, which gives prosthetic care to those who lack access. In the areas where I spend time, I feel like people are pretty actively involved in addressing disability issues openly. While at Stanford, the university was always supportive of my needs.
How does disability intersect with your research, your workplace, your field?
TECKLENBURG: Having ADHD has definitely made many aspects of working difficult. I spend a good amount of mental energy trying to keep myself on track and focused on what needs to be done, which can mean that I have less energy to spend on doing research and makes me more prone to burnout. It can also be isolating because of the culture of academia, that considers students who work really long hours and pull all-nighters to be “better” or “more dedicated” researchers. It’s impossible to not compare myself to other students and it makes it really easy to harshly judge myself. On the other hand, having ADHD helps me think outside of the box and I tend to explore a lot of different topics. When I’m really interested in a subject, it is very easy to focus and get to the bottom of whatever questions I have or want to know more about.
PERKINS: My job involves looking into grants and funding opportunities in agriculture, so my disability doesn’t really come into play much, but I have been surprised to see some programs emphasizing participation of disabled people (farmers, etc.). This wasn’t a connection I expected to see, so I feel like maybe that is a good sign of progress.
TEMPLE: I’ve always been interested in the ways in which the environment and health interact. At Stanford, I studied Public Policy and Earth Systems, which set me up to understand how big trends and environments affect humans and vice versa – in fact, my Earth Systems thesis was about how climate change impacts malaria ecology globally. After a few pivotal health experiences – like becoming a wheelchair user, being in and out of the hospital because of health issues rendered more complex and impactful by my disability, and living in a nursing home for a time – I got interested in the experiences of people with disabilities navigating the health system and decided to pursue medical school. I also had the opportunity to work for the World Health Organization on the first-ever World Report on Disability. Having been trained in systems thinking and interdisciplinary studies was really the underpinning for my entire education – I can’t imagine how my brain would work without that foundational training. These days I think a lot about how the natural environment, the built environment, and institutional and policy environments affect the lives and health of my patients with disabilities.
CARRERA ZAMANILLO: All of my career choices have been impacted by my conditions – I had to navigate through multiple areas within biology and environmental science to find a place where I could work. Some might think that working in diversity, equity, and inclusion has nothing to do with my professional training, but I apply many of the skills I developed as a scientist every day. I really enjoy working in DEI and I still identify as a scientist – I simply work in an area that many scientific researchers are just starting to explore.
Why do we need to make space to discuss disability in the workplace?
TEMPLE: Health care providers are frequent gatekeepers to key services, especially for people with disabilities. They’ve historically defined “normality” in ways that can be arbitrary and sometimes dehumanizing for those with disabilities; they also have often looked upon us as objects and reinforced unhelpful stereotypes about what people with disabilities can or cannot do. So as a doctor, I work to set a tone in my clinic where we discuss disability in ways that constructively include this part of human diversity. I think it’s important that we align our core values to human possibility and not stigmatize those who exist in a different way than what is normative. This same principle applies to academia as well – as employers and/or teachers, the way we talk about disability, the way we understand people’s behavior, the way we accommodate people with disabilities, and the policies we create really reflect our core values and set the tone for everyone in that environment. We need to address structural issues as well as appropriately support individuals.
TECKLENBURG: It’s important to discuss these things because it can greatly improve the health of the community. It also forms a stronger community by recognizing that people have different needs; to create a culture where people can support others and also be supported. I recommend that people read Disability Visibility: First-Person Stories from the Twenty-First Century edited by Alice Wong.
CARRERA ZAMANILLO: As human beings, we all have multiple identities; some are dominant and some are oppressed. We need to recognize this and use our personal privileges in service to removing obstacles and creating more inclusive environments. Understanding how ableism works has allowed me to see beyond “my limitations” and has allowed me to expand my professional opportunities. I hope that by discussing disability more openly in the workplace, we are able to eliminate the pain of social stigmas around these topics that people with disabilities feel every day.
PERKINS: It’s important for non-disabled people to be open about discussing disability and be willing to make accommodations when requested, but ultimately I think it is up to disabled people to decide whether their disability is something they want to bring attention to or if they just want to work like everyone else.
This story is part of the #StanfordEarthCelebrates series hosted by Stanford Earth Diversity, Equity and Inclusion. Continue to read the rest of the collection here.
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Top Banner: A wheelchair user overlooks Bryce Canyon National Park in Utah. The National Park Service has launched an accessibility strategy aimed at welcoming all visitors and staff, creating a culture of inclusion, and making critical improvements to both new and existing programs, facilities, and services. (Photo credit: Leonard Zhukovsky / Shutterstock.com)