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Lived Experiences of Disabled STEM Students

WHAT MAKES AN INCLUSIVE EDUCATIONAL SPACE

Dave Caudel, associate director of the Frist Center for Autism and Innovation at Vanderbilt University, began a panel of current and recent science, technology, engineering, and mathematics (STEM) students sharing their lived experiences by asking them about a disability-inclusive and accessible space they experienced and what made it different from other spaces.

Megan Lynch, a master’s student in horticulture and agronomy at the University of California, Davis, and founder of UC Access Now, said she had never experienced an inclusive or accessible space in education or work. “The most disability-friendly and accessible space I experienced was one put together by disabled people themselves,” she said, describing the summer camp activities around the release of the documentary Crip Camp in 2020. “Just everything about it really communicated that the people had put a lot of thought into it ahead of time in terms of what accessibility and inclusion would be.” In so many other places she has been, telling someone that she has been negatively affected, “the response is usually defensive and/or angry.”

Hari Srinivasan, a doctoral neuroscience student at Vanderbilt University, said while accommodations and checkboxes are probably the first things that come to mind when considering accessibility, “it’s the humanity part and empathy part and flexible mindset” that makes accessibility happen

on a continuing basis. His own experience includes an English instructor who arranged for him to participate remotely (before the pandemic) instead of dropping the semester because he could not make it in person. “She took the initiative to find work-arounds so I could be included,” Srinivasan, who used a virtual voice to communicate during the panel, said. “She literally enabled accessibility.” Other examples included a college biology professor who modified the final lab exam to be accessible to Srinivasan, and a lab director at a UC Berkeley lab who created a documentation role so he could be involved without having to worry about fine motor tasks. “I actually got to be involved in all the projects by giving ideas. I have learned so much about accessibility and ideas for adapting equipment for disability from my time at the lab.” That experience gave him the courage and confidence that STEM could work for him. Caudel added that his most accommodating workspace is one he finds himself in now, and that is in part because his schedule and the people he works with are flexible and sensitive to his needs, much like Srinivasan’s teachers.

For Stephanie Feola, a chemistry postdoctoral research associate at the University of Arkansas at Little Rock, accessible educational spaces have happened in one-on-one relationships. “It usually involved someone that recognized that I needed a different approach, or I needed extra time, or I needed something,” they said. Feola echoed what Lynch shared, that accessible spaces were not necessarily in the classroom but with their peers. “I have the absolute privilege of having a group of friends where we all have various needs and we are making sure we all can be able to access things together,” including sharing resources and taking notes, they said. “It’s really about having a community of people who are able to use our strengths to make things accessible so that it didn’t feel like we were left behind for whatever reason.”

Caudel added that community was an element of accommodating and including spaces. “When you’ve got people pulling together, the impossible becomes pretty easy to solve,” he said. He also referenced previous talks that discussed the importance of involving people with all kinds of disabilities and doing so early in the process of building a space. “I would also argue that you want to be thinking about how can we build some mechanisms in place, so if something we didn’t think of comes up, that we can pivot and adjust.”

Changing the Culture

Feola said it is important to emphasize that accessibility is not a “one- and-done thing.” You can set the structures, but not everything is going to

fit everyone, so tools and resources must be in place to think of different ways. “Implement things are you able to implement in a scaffold … but have the flexibility to modify in the moment,” they said.

Despite the title of this overarching conference series, Disrupting Ableism and Advancing STEM, many of the panels were still talking about “mere compliance,” Lynch said. “Compliance is part of what keeps people regimented in the idea we can’t be flexible.” Getting out of that mindset involves immediately considering accessibility. “If you have the idea to do something … the very next moment should be how do I make it accessible? Not at the end,” she said.

People who are not obviously disabled should consider disclosure, when possible, Lynch said. When her disability became “undeniable,” she was candid about it, “not because I felt it was safe, [but] because I feel if people don’t, nothing changes.” Not everyone has the choice to “come out” as disabled, Lynch said, and those who can “really owe it to those folks and society to disclose where it’s possible, because this is how we change the culture.” When she arrived at her graduate program, she was still in the mindset of accommodation, likening it to requesting more comfortable manacles. But she was radicalized by an institution she called the “most viciously ableist I’ve ever experienced,” making her wonder “why you can’t care for me as a human being.” It is not that policies and procedures are not important, Lynch said, but “we have to bust beyond the idea that what we are trying to do is come up with a better kind of compliance.”

Mindset in Policies and Procedures

Training must be part of any disability policies or procedures, Caudel said, and help people understand that many of these efforts are not really all that difficult. “A lot of people are kind of afraid of them or think there may be a lot of work or effort,” he said, asking the panelists what policies and procedures are needed for more inclusive and accessible spaces and cultures.

In the course of her student experience, Lynch realized she had to advocate for herself, because the “client” of the disabled student center was actually the university or school, and was organized “around avoiding litigation or winning litigation.” As a result, “it’s very bad for accessibility, not because they are trying to fight it, but because it’s organized around the law,” she said. It is especially notable that there are two disability offices, one for students and one for faculty, she added. The “last straw” for her was disability not being considered a priority for affordable graduate housing,

and almost having to live out of her car. The university takes her tuition and fees but does not want to use it when it comes to buying the things needed to make learning possible, Lynch said. “What is really crucial is to view it as the whole thing: how I get here and how I live and transport myself to work,” she said, adding that college brochures show students not just in the classroom but also on campus and at events. Not all of those places are accessible, she added.

Feola echoed a similar experience with student accessibility services at their institution. “Graduate students are a second thought in regard to accessibility. Especially in research contexts,” they said. Feola was encouraged to talk with the accessibility office about getting a research assistant to help with data processing, but instead was told “‘if I get someone to help me with my degree am I really getting my degree?’ This [was said by] somebody who is supposed to help me.” The accessibility office’s suggestion of a screen reader did not make sense for their disabilities or their access need, they said, and it showed the need for across-the-board training for people in accessibility offices. “We know [accessibility offices] are underfunded … [and] are highly constrained ... but we also know that there needs to be more than just following the ADA [Americans with Disabilities Act] letter,” they added.¹ Effort needs to happen at the institutional level to say this is an important thing that requires significantly more investment and involves listening to what students need. On an individual level, those working through accessibility procedures need to recognize they will make mistakes, Feola said. “What you do after the mistake is the important part.... If we are talking about STEM, we are all about learning. Grow with the new evidence.”

Srinivasan was reminded of something the disability rights activist Judy Heumann talked about in her memoir: “We tend to think that equality is about treating everyone the same when it’s not,” he recalled. Equity of access looks different for him and others with nontraditional disabilities, and when that is not understood, it gets framed as complaining, he said. Also crucial is who gets to decide “reasonable” when considering accommodations. “There is no uniformity, which baffles the provider at the other end.” The needs of autism may be considered too much work and allow for institutional loopholes. Also, some accommodations may clash, he added, for example someone with autism who needs a service animal in the same educational space as another who is terrified of dogs.

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¹ 42 USC 12101, available at https://uscode.house.gov/browse/prelim@title42/chapter126&edition=prelim.

A key missing piece of accessibility is humanity, compassion, and empathy, Srinivasan said. It was the mindset of his high school teachers and college instructors that supported him. “It’s not so much about dollar cost; it’s the mindset that has allowed flexibility,” he said. Bringing about that mindset shift in teachers is important, and previous research on changing outcomes for Black students by changing teacher mindsets presented a potential parallel for him. A key strategy was reminding teachers why they entered the profession in the first place.

TRANSITION TO WORK

Relationships and Barriers

Laureen Summers, project director for the Entry Point! program at the American Association for the Advancement of Science began the panel on transitioning to STEM careers for students with disabilities by identifying how important relationship building was in internships. Her program places undergraduates and graduates with disabilities in summer internships that match their skills and interests. When managers see students experiment with different accommodations and platforms for their work, they begin to understand their commonalities, including shared goals and experiences. These relationships have helped the managers to respect and appreciate the skills and competencies of their interns, she said. There is still stigma about employing students with disabilities, she noted, whether in internships or transition to full employment, often showing up as concerns about students’ abilities to perform a job and their access needs. “It may be difficult to really accept others who are different, if we get afraid of what may happen to our own bodies that may change our life,” Summers said, but students with disabilities have much to teach employers about problem solving, innovation, experimentation, and coping strategies. “For me, relationships are always key, and they can tell you everything.”

Moderator Emily Ackerman, a postdoctoral researcher in the Lahav Lab at Harvard Medical School, asked the panelists what the biggest obstacles were when navigating from educational spaces to careers. Environments and attitudes that make it difficult for people with disabilities to get a foot in the door may be an indication of a workplace where they cannot thrive and demonstrate their talents, said Kimberly J. Osmani, senior extension associate at the K. Lisa Yang and Hock E. Tan Institute on Employment and Disability at Cornell University. Discrimination and bias in the workplace

must be discussed, and she sees it as an opportunity to educate businesses on how they can change their culture and attitudes. But some accessibility challenges limit an individual’s ability to manage the interview process, Osmani said, including navigating transportation to get to an in-person job interview and the challenges of completing applications, whether it is due to inaccessible technology or to the language used on the application itself. Businesses and policymakers must be encouraged to examine their own systems and processes to really drill down what is critical to get on a job application rather than in an interview, she noted, and accept nonstandard ways for people to demonstrate their skills and expertise. “There is a narrow perspective ... a lack of creativity or flexibility about what a resume should look like or what form it should take, or what an interview should look like,” she said.

She also wants to increase the expectation for students with disabilities that they can be part of the workforce. “Students with disability could and should be learning about all aspects related to preparing for employment and should be equipped with the skills and the knowledge to successfully navigate the whole entire job search process,” Osmani said, adding that this requires a lot of coordination across systems and in partnering with businesses for these types of opportunities.

Apprenticeships and Building Career Aspirations

One of the ways the U.S. Department of Labor has engaged with the transition to work has been through developing pathways such as inclusive apprenticeships, said Taryn Williams, assistant secretary of the Office of Disability Employment Policy. Such apprenticeships integrate educational instruction, workforce development, and paid on-the-job training and mentorship, she said, leading to a portable national credential that contributes to job mobility. “It’s not enough just to get a job. We really do want to foster and build career aspirations and the ability to move across one’s interests.” Successful programs in apprenticeships require collaborative partnerships and ensure a continuum of services, Williams said. Apprenticeship Inclusion Models (AIM) was a project designed specifically to be more accessible to youth with disabilities for high-demand, well-paying careers in STEM, such as information technology, advanced manufacturing, and healthcare. They tested recruitment and retention strategies for these pathways, and have built on that for their latest partnerships, Williams added, sharing more information about AIM.

As an early-career professional herself, Rasheera Dopson, a public health research assistant at the Morehouse School of Medicine, emphasized continuously engaging people with disabilities in early-career stages. “We can have all of the resources, but if people with disabilities do not know how to use them or that these resources even exist, it does them no good,” Dopson said. As a first-generation college student, the experience of entering the work force and wanting to go into health policy and public health “was literally me entering a room [and] trying to figure out where all the lights are.” Her internship at the American Association of People with Disabilities was not only her first encounter with people with disabilities who were college educated with sustainable careers, but they showed how it was possible to transition from their college education into the workforce in a very smooth way. “We really have to be intentional to make sure we are plugging young adults into the greater disability community, because there are a lot of disabled advocates with a plethora of resources,” she said. They can serve as mentors, navigate what jobs are out there, and think about approaching work a different way, she added.

OVERCOMING BIAS AND STIGMA

A panel moderated by Ackerman discussed overcoming bias and stigma in educational settings and the workplace. Bias and stigma are another way of saying “unaligned expectations,” Hoby Wedler, CEO of the Wedland Group, said. Those mismatched expectations can have negative consequences for the person on the receiving end. “If the expectations are not high for a person or a group, it’s going to be hard for that person or group to believe in themselves enough to really push the boundaries, and push back those barriers,” he said. Bias and stigma harm “our ability to thrive” in education and careers, Wedler said, when others “thinking they know when they really don’t necessarily know, and putting us in compartments that maybe we don’t fit into.” In his own experience, he’s had many people think that a Blind person should not study something “seemingly as visual” as chemistry. “It takes a lot of education, discussion, and just showing people really what is possible” to overcome that bias, he said.

Attitudinal Barriers

The biggest research finding on workplace barriers is that it is often related to the attitude of the coworkers, said Andrew Houtenville, research

director at the Institute on Disability at the University of New Hampshire. As a professor, he was taught never to demotivate a student, and he sees analogs in the stigmatizing behavior that can be present in educational settings. “Low expectations can really harm the motivation of the student,” he said. “For me, that’s at the heart of overcoming bias and stigma. Overcoming is not on the part of the person with a disability, it’s on the part of people without disabilities.”

Fear of those low expectations prevents people with invisible disabilities from getting the help they need, said L. Miché Aaron, a doctoral student at Johns Hopkins University. “I know what I need to help me succeed. Do I share that with who I’m working with and run the risk of experiencing those low expectations?” she asked, outlining potentially negative outcomes whether she disclosed her disability or not. Houtenville said that what is needed is a code of conduct for faculty that addresses multiple forms of bias, and to avoid the “hazing mentality” that exists in graduate school and particularly in STEM. “Mental health is an invisible disability many times, and it’s very hard for students to communicate with faculty about it,” given the stigma, he said. Ackerman connected this to the way science as a whole “values putting our bodies and minds on the line,” she said. “My body cannot stay up all night. It cannot work these long hours. I cannot travel. I cannot do these things, and it doesn’t make me a bad scientist. It is a fact of life for me and for many people, but there is a significant bias to the fact that I cannot do those things. “

Wedler said one way he has been able to overcome low expectations in academic settings is to directly address an instructor’s bias early on. “I’d go to their office deliberately and make a point of saying, ‘I know you may have concerns about me studying chemistry,’” and he encouraged professors to think about making the learning experience more accessible to him as a collaborative effort. “I teach you the best ways to teach me; you teach me all kinds of chemistry I didn’t know.”

Experiences of Accessible, Inclusive Spaces

Ackerman asked the panel to describe a truly inclusive and accessible experience. Aaron shared that after failing her first qualifying exam, she had additional testing and discussion with her speech therapist. They worked out new strategies she could use to demonstrate her knowledge, including having a formatted structure and illustrating her answers in addition to verbal explanations. Her advisor and committee members

allowed her to make these adjustments “while keeping with the spirit of the qualifying exam.” Houtenville has “always strived to give untimed exams,” because for many types of disabilities, “the consequence is that it may take a little bit longer to do something.”

Wedler described chemistry camps he and his mentor had created for students that tried to give them space and confidence to make mistakes. “For better or for worse, a lot of the students were very sheltered by their parents and the expectations were low,” he said. But he was encouraged to see all “the students come together and feel totally free to get lost with their Blind mentors, mix chemicals, spill things if they made a mistake, whatever the case may be,” he said. Through that experience, he said, “they were students who did not have to identify as Blind people. They were people who happened to be blind.”

Strategies for Overcoming Bias

Ackerman next asked the panelists to share strategies for overcoming bias and stigma. Houtenville said he keeps the effects of ableism in mind as he teaches and designs his courses. He also thinks about the language he uses, and he has recently begun disclosing his own disability in introductions and in his National Institutes of Health biography. Before, he did not disclose because he “didn’t want to have it appear as [if] I was getting any favor,” for his research into disability, he said. But he recognized that was “really fear of being seen in certain ways.” Disclosing his own disability is inspirational for his students, “because they may not have the same disabilities … but it makes all the difference in the world” to know others are with them.

Wedler said that he had no choice but to come to terms with his very visible disability early on, but that allowed him to advocate for himself. “Once we own who we are and fully acknowledge who we are as individuals … we can advocate for ourselves freely. We can speak about what we can do freely.” “Self-disclosure and individual behavior is important,” Houtenville said, but “there really needs to be a focus on the structural things that make someone fearful. He highlighted how power differentials in labs—regardless if they are private, public, academic, or non-academic—create more opportunities for intentional or unintentional bias to really affect people.

Aaron said she is still “trying to fully absorb the fact that I have difficulties,” but she has found that identifying her accomplishments helps

increase her confidence. “Reminding yourself of who you are and what you got, definitely shakes away some of that internal bias,” she said, adding that finding somebody who will be on your side when you do come up against external bias is key. “Honestly, the biggest struggle of overcoming bias is the one that’s inside, the one that’s popping up all because of external voices telling you things that aren’t even true about yourself,” she said. “Because you know who you are. You know what you want.”

Ackerman said community building is important to finding that support and combatting internal and external biases. “I don’t want you to feel like our only advice is to believe in yourself, because I do think that we are all up against a whole system of barriers against us,” she said. She asked a related question from the audience: Is a national movement—similar to Black Lives Matter or MeToo that have been empowering for other groups in recent years—needed to make significant improvement for the disability community, and how would that be accomplished?

Houtenville said that history shows improvements for the disability community tend to come after other groups go first. “That’s disappointing, but we can learn a lot. I do think that there needs to be a voice … especially graduate-level higher education.” Wedler said he is not sure “a big movement” is needed, but he agrees more needs to be done in higher education. Creating more awareness of “people with disabilities doing normal things, having normal careers” will help a lot. Aaron said a broad movement in academia would be extremely beneficial: “There’s a lot of bias in academia that prevents a lot of students, well-qualified students, from showing that they have the ability to succeed in their field.”