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Toward Disrupting Ableism and Advancing STEM

LEADERSHIP DISCUSSION

The national leadership summit began with a discussion between the chair of the Beyond Compliance: Promoting the Success of People with Disabilities in the STEM Workforce planning committee, Bonnielin Swenor, Marcia McNutt, president of the National Academy of Sciences (NAS), and Karen Marrongelle, chief operating officer of the U.S. National Science Foundation (NSF). Swenor asked Marrongelle to share some background on NSF’s work on disability inclusion in science, technology, engineering, and mathematics (STEM).

NSF has a “long history” of supporting disability inclusion, Marrongelle said. In 2023, they have programs and funding opportunities that include rehabilitation research, STEM, education research, use-inspired solutions to enhance quality of life, and workplace equity research. In May 2023, NSF issued a new solicitation: Workplace equity for persons with disabilities in STEM and STEM education.¹ “It is going to invest in and support projects that focus on a fundamental, applied, and translational research that advance knowledge and practice around diverse, equitable, inclusive, and accessible STEM and STEM education workplaces,” Marrongelle said, including postsecondary training environments for persons with disabilities. The solicitation is building upon a “Dear Colleague” letter NSF issued in August 2021, encouraging submission of new proposals, or supplemental requests

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¹ See https://www.nsf.gov/pubs/2023/nsf23593/nsf23593.htm.

to existing awards, to encourage the engagement of students, postdoctoral scholars, faculty, and staff with disabilities.

In 1992, NSF funded the University of Washington’s Disabilities, Opportunities, Internetworking, and Technology (DO-IT) Center, which is now a “nationally recognized resource for empowering persons with disabilities in STEM and STEM education,” Marrongelle said. More recently, NSF has also funded an AI (Artificial Intelligence) Institute led by the University of Buffalo to use artificial intelligence to develop better solutions for children with specific speech language needs, and, through its convergence accelerator program, has 16 projects developing “use-inspired solutions to enhance quality of life and employment opportunities for persons with disabilities.” Marrongelle said this was not an exhaustive list of NSF funding for disability inclusion but some of the more recent examples.

Why Now?

Swenor asked McNutt about the timing for the National Academies of Sciences, Engineering, and Medicine getting involved in the effort to disrupt ableism. The National Academies have been very focused on the issue of where the scientific workforce for tomorrow is going to come from, McNutt said. There is a realization that if science does not pull in the full talents of everyone—women, underrepresented minorities, and people with disabilities—“we certainly aren’t going to remain a science powerhouse.” McNutt added that she was old enough to remember when “as a woman studying physics in college, [she] was as rare as someone with a disability in a physics lab,” as well as the negative assumptions that were being made about her.

“Fast-forward to today and we find women in research labs of all disciplines and places all over the world, and it is no longer an anomaly,” McNutt said. “We have to imagine that same future for people with disabilities.” Disability inclusion has not been addressed head-on, but she said she was “hoping that this meeting will be a launchpad for all of us to take that more seriously.”

Disrupting Ableism

Marrongelle agreed with McNutt about becoming more intentional with who is included in STEM disciplines and the STEM workforce for “the U.S. scientific enterprise to continue to thrive.” She added that NSF’s

director, Sethuraman Panchanathan, “passionately believes in this idea that anyone, anywhere—no matter who they are, where they live, [or] what they look like—they have innovative ideas to contribute to STEM.” It is up to us, she added, to ensure those ideas can get included in the ecosystem.

But at least three things, among many others, are needed to disrupt ableism in STEM, Marrongelle said. First, strengthen multiple pathways into STEM fields: “We know now that any individual’s pathway into STEM takes twists and turns,” she said. “And it’s rare that two people’s paths look exactly alike.” If someone needs to take time off or is entering the field later in life, “we need to ensure ... that there is a way in” as well as encourage new solutions to allow students and researchers to fully engage in their degree programs. “This means that labs have to be fully accessible, [and] field training sites and internship workplaces need to be reimagined,” she noted, which requires working in conjunction with employers.

Second, researchers need to build on the foundation of knowledge about how ableism can be disrupted, and workplaces made to be inclusive. “I can’t stress this enough, especially coming from NSF, that that research base is so critically important,” she added. Third, and most importantly, Marrongelle said, we need to create communities that value and respect the contributions, experiences, and perspectives of people with disabilities, and embrace those contributions in STEM: “It is that culture change that is going to take the longest but is the most important.”

Swenor asked McNutt to describe the gap between the impression that people with disabilities cannot succeed in STEM versus the reality that they do. McNutt began by asking the audience, “Who here has never heard of Stephen Hawking?” No hands went up. “We don’t have enough counterparts for Hawking,” across all the fields of science, she said. Years ago, as head of the organization that operated the U.S. oceanographic research fleet, she was involved in a study to understand what it would take to make research ships accessible for people with disabilities. She realized being unable to name similarly famous oceanographers with disabilities was an illustrative problem. “We will never be able to list them if we don’t make our field accessible to those with disabilities,” she said. “We have to start there.” Scientific fields are not showing the full range of possibilities for what science looks like, McNutt added. “If our advertisements for people in the geosciences are people in lederhosen with hardhats scaling cliffs in order to get geologic samples … that is certainly not going to look like a real inviting place. You could be a geoscientist and be working on the next generation of climate models and you never have to scale a cliff,” she said.

Swenor asked Marrongelle what ideas or advice she had for STEM leaders for disrupting ableism. “There is not going to be a one-size-fits-all solution and so we need to recognize that and celebrate that,” Marrongelle said. Instead, leaders must support and test a broad range of approaches. “I think especially for STEM leaders we need to ensure that once we have done that experimentation … we need to prioritize the sustained growth and lasting change of what is needed,” she added. Leaders need to say this is important and prioritize it through budget or policies, she said.

Disrupting ableism in STEM creates positive outcomes for a variety of people, McNutt said. “There are too many brilliant minds that are either being unemployed or underemployed because we haven’t made the accommodations to actually take advantage of their skill sets and their enthusiasm and their brilliance in the science field.” But such changes have broader implications, she noted. A friend of hers used widely available broadband to organize an oceanographic cruise with scientific parties both on the ship and on shore. Those ashore, including those with disabilities, got real-time data and video from underwater vehicles to do data processing. Not only were they not seasick and needed less downtime to do their work, but the data were also being processed in real time and informed research decisions, guiding the expedition to take the most advantage of the time at sea.

“All sorts of people that we might not necessarily view as having conventional disabilities were able to be included in it,” McNutt said. “I’m thinking of a mother at home with a young baby: she can’t leave to go for 1 month out to sea, but she can certainly log in for a number of hours every day and lend her expertise.” The bottom line, McNutt said, is expanding the diversity in the workforce. “It is the same argument we make for including women and including minorities, but it is also for disabled people. They bring a unique perspective that we need to take advantage of.”

THE INTERSECTIONS OF DISABILITY, EQUITY, AND STEM

Mona Minkara, planning committee member and head of the Computational Modeling for BioInterface Engineering, or COMBINE, Lab in the Department of Bioengineering at Northeastern University, moderated a panel with three scientists to discuss the intersections of disability, equity, and STEM. She encouraged the panel to “really push our limits and talk about things that we usually are too uncomfortable to talk about.”

Lived Experience

Throughout her schooling, Anjali Forber-Pratt, director of the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), was “constantly faced” not only with physical inaccessibility, in terms of accessing spaces, but also attitudinal inaccessibility. She faced assumptions that she would not go to college or was not interested in science because of her disability, and ultimately took her school district to court over not being allowed to sign up for a specific science class. And as she entered higher education and became a researcher, she found there was a lack of disability representation: very few professors and researchers that looked like her. “It really drove me down this pathway of studying disability identity development, and how is it that individuals can make meaning and be proud of the disability,” she said.

Cassandra McCall, professor of engineering education at Utah State University, was diagnosed with Stargardt disease, which is causing her to slowly lose her central vision, when she was in a doctoral program. She was experiencing both the transition of moving into engineering education as well as how to navigate the world and accept things like not being able to drive anymore. “I was pretty open about it in terms of working with my dissertation committee,” she said. In her postdoc career, she has worked with students with disabilities in civil engineering, “trying to understand more about their experiences and what we do as engineering faculty to perpetuate or stigmatize disability identity and engineering identity.”

Wanda Díaz-Merced, an astronomer at the European Gravitational Observatory, said that as she transitioned through different levels of her career, as a Blind person, she did not have access to the same amount and quality of information. “At every single transition from one aspect of performance to the other, we would start with a disadvantage,” Díaz-Merced said. She likened it to transferring schools to another country, where you began getting lower grades, not because you were suddenly a worse student, but because of a language barrier. This “imposed disadvantage” was very hard for others to perceive, she said.

“If the playing field is equalized, then we will be able to participate equally, and we will be able to achieve and progress equally,” she said. “No one will start with a disadvantage.” What made a difference in her journey was seeking scientific evidence for how audio could be useful for astrophysical research. “With simple, very well-designed experiments, all other

opportunities opened up, not only to better more detailed discoveries in science but also … to bring all performance styles to do science.”

Minkara asked how disability has informed Forber-Pratt’s career and the field at large. Forber-Pratt said disability is such an important part of who she is and drove the types of research questions she wanted to study as a scientist. That continues as the leader of NIDILRR, to make sure the entire research enterprise and all steps of the research process are supportive of people with disabilities—not only investigators but also project officers, peer reviewers, and participants.

Disability identity has both internal and external components, Forber-Pratt said, including how you talk about that identity to others, and when you disclose. There are layers of complication based on the type of disability you may have, if you have multiple disabilities or if you acquire them later, she added. “How you find and build that sense of community and solidarity with that broader disability community for me and for many individuals … becomes a protective factor when you encounter elements of ableism,” she said. Now that she is in the position of being able to award grants and form research policy, Forber-Pratt said, all of these elements are “helping to guide the decisions that I make every single day,” and foster conversations with federal colleagues and grantees.

Minkara noted that Forber-Pratt had used the word ableism and asked the panel how each of them defined that term. Forber-Pratt said ableism was “inequities, prejudices, and discrimination that we experience and that occur because of our disability” but was also the systemic elements. In this way it is similar with other isms, she added, in that it was not just one singular barrier or singular incident. “I was being counseled out of considering a field in research and in science; it was the compounding element of hearing time and time again from multiple people of authority … that then followed me throughout my entire career,” Forber-Pratt said.

McCall agreed and said it is difficult to make a cultural shift when many people do not experience or are not aware of the barriers. “I have a colleague who talks to me about it as being a fish in a fishbowl. How do you tell a fish that they are living in water because that is all they have known?” These conversations are really bringing things to the forefront “that have been embedded in our society and in our cultures for so long,” she added.

What Does It Mean to Have Equity in STEM?

“I will go for equity, and I do not go for equal,” Díaz-Merced said. “When it is equal, I may not have the things that may feed my context in order for me to perform.” Equity is about being able to “decide freely” and “not rely on premade choices made for us,” she said. STEM fields also need to stop “patching things that have been broken for a long while” and instead invest money to rebuild. Addressing people’s needs to do their science will improve science at large, she added. “If someone is performing outside of the limited spectrum, the potential for science increases exponentially when the limitations are removed.” She gave the example of how the development of radio astronomy—moving beyond what scientists could see only with their eyes—wholly changed the field. “It propelled development of space science because it was not limited to how far the eye can see.” STEM fields now have “an investment to make … to rebuild the scaffolding in the way we are performing in science, change the economic models, and change the metrics of productivity,” she said.

“I have some colleagues who are very concerned about maintaining equality in the classroom, often described as fairness,” McCall said. “Things like accommodations or extending testing times—they are really uncomfortable with.” But these are tools that help people “demonstrate their knowledge and their capabilities,” she added. In her own teaching, she has tried to develop a flexible system for students, not only in response to COVID-19 but to make class accessible for people managing differences and short-term disabilities. STEM fields “don’t have to continue the trajectory we have been on” and instead can develop practices such as making field experiments more accessible. She emphasized that equality and equity are not the same.

Equity is also about “meeting communities where they are at,” Forber-Pratt said, and that includes allocating resources to make up for historical oppression and systematic ableism. All of these conversations, she added, are about working toward justice, “toward the dream where we can exist and interact in society and in our professional jobs, in the world free from barriers or from oppression.” Unfortunately, ableism prevails within the disability community itself, she said. Certain disabled voices, including those with traditional disabilities, get privileged over others. “We tend to place more value on that input, as opposed to an individual, say, for example, who might be nonspeaking or have intellectual disability or any combination thereof.” Breaking down those hierarchies is required to fully realize equity, Forber-Pratt said.

Taking Action

Minkara asked the panelists what policies they would like to see change to move toward equity in STEM. McCall said that she is thinking more about how students can be supported to consider opportunities in STEM and how they can pursue them. “Engineers are considered to be people who fix things,” she said, and disabled students have spoken with her about the tension between their disability identity and their engineering identity—they cannot “fix” their disability. She is also working with vocational rehabilitation counselors at Utah State University to get more students with disabilities into STEM, as well as getting more faculty support, especially for those who are not already interested in disability as a research area. “We are trying to figure out how do we get these communication channels open and streamlined to where faculty are also on the ground making these decisions and helping to create more inclusive classrooms,” she said.

Díaz-Merced said her action began with evidence that more tools were needed for scientific research. “When we did the first experiments that showed professional astrophysicists at Harvard, [that] sound increases their sensitivity to events in the data that by their nature are blind to the eye, that was really, really shocking . . . but [it] also was a turning point,” she said. She could no longer be told that such tools were solely for education and outreach but could be used for scientific research and bringing more people into the pipeline of making scientific contributions.

“We need a policy to put in place the things needed for the current scientific economy to transition to multisensory practices,” she said, along with policies that strengthen international frameworks to support affected individuals. Whether through an office, mandate, or treaty, Díaz-Merced said, policies must prevent and correct inaccessibility, emphasize the role of people with disabilities in producing science, validate multisensorial practices, and support career transitions for those who acquire disabilities later in life. “I urge a rapid transition to methods that are not reliant on current methods of practice, and especially do not rely on current web accessibility guidelines,” she said. Minkara agreed, as a Blind person, that she would love to see all digital content become fully accessible.

The Biden-Harris administration has a set of executive orders for advancing equity that explicitly names disability, Forber-Pratt said. In her own work at NIDILRR, it is important to gather data to identify how they are fulfilling these executive orders—including grants, principal investigators, fellowships, and capacity building. “We believe wholeheartedly that

people with disabilities should be on our peer-reviewed panels, but we weren’t actually systematically collecting that data,” she said. Forber-Pratt recently went through a process to assess NIDILRR’s own internal peer review process and develop and administer a survey to their peer reviewers. “We actually will be able … to really make sure that we are practicing what we preach.”

What Can Others Do?

At the end of the panel, the experts answered a series of questions from the audience about what people with ability privilege can do to redress or repair damage done by STEM institutions to people with disabilities, how to improve the language and conversations their colleagues are having around disability, and how to build community.

Build on that awareness of privilege by making sure you are inviting people with disabilities into conversations and decision rooms, Forber-Pratt counseled. One way is to use invitations, whether to serve on a committee or speak on a panel, to suggest bringing someone else along or having them go in your place—and saying why.

Díaz-Merced said scientific institutions needed to address the harm their past policies and hiring practices had done to disabled people, and cited NASA as an agency that had begun to address this publicly. McCall suggested a book titled Keywords for Disability Studies (Adams et al., 2015), which explains common concepts for those who are not experts to understand the historical and political implications of disability. She also suggested getting to really know people, so that you understand their disability is only one aspect of who they are. Minkara added that allies must really listen to people with disabilities when they explain how they identify. She has had multiple instances of people being “horrified” when she says she is Blind. “But I am Blind,” she said.

Part of building a community, Forber-Pratt said, is being willing to engage in the questions of how the community and the physical space can be more accessible and supportive for all. When she was leading a research lab, they had a conversation about everyone’s access needs whether they identified as having a disability or not, and allowed for changes. “If you are not used to what accommodations you might need in order to be successful at a specific task, it will be a little bit of trial and error. We just had that be a standing agenda item in our lab at meetings, checking in about access.”

Allies can respond to discrimination and prejudice by asking the person with a disability how they can best respond to a bad situation, Forber-Pratt said. “Say, Hey, I’m willing to help. How could we figure this out together?” But allies can also say something if they notice an ableist practice in general, “when you see a car that is blocking the ramp and when you see materials aren’t available in accessible formats,” she said.

Díaz-Merced agreed, adding that many times disabled people do not say things because they fear the response. “Having a voice of support may make a humongous difference and it may make us feel, for the first time, safe in our professional environment.”

As a takeaway from the conversation, Forber-Pratt said achieving equity is doable, but “it takes every single one of our expertise,” regardless of disability or job role. “We literally need all of us from our own vantage points—whether you’re in a university or in federal government or whether you are trying to get grants—we need every single one of those perspectives in order to bring about change,” she said. Small actions add up, McCall added, and communicating the actions and strategies you are taking widely has an even bigger effect. Díaz-Merced agreed that having difficult conversations was healthy, “but I think we are at a stage in which we have to take concrete actions.”

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