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Centering Disability and Identifying Equity
DESCRIBING DISABILITY AND ABLEISM
As part of the leadership summit, Jacquelyn Chini, professor of physics and undergraduate program associate director at the University of Central Florida, presented an overview of her forthcoming paper1 on describing disability, including different ways of defining and understanding disability and discrimination against disabled people.
Impairment and Disability
Chini began with a definition from Disabled Peoples’ International (DPI)2 that specifically splits impairment and disability. Impairment is a functional limitation within the individual caused by physical, mental, or sensory impairment. Disability “is something extra on top of impairment,” Chini said, sharing the definition from DPI: “The loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical or social barriers.”
Chini defines ableism as a bias, possibly subconscious, in favor of able-bodied and able-minded people. “With this comes the assumption, again possibly unexamined, that nondisabled people are inherently superior
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1 Chini, 2023, Describing Disability: Language and Models (https://nap.nationalacademies.org/resource/27245).
to disabled people.” Society is steeped in ableism, Chini said, “so of course we will all have ableist ideas that pop into our minds.” She shared two quotes with different perspectives on ableism, first from Gregor Wolbring (2008), who wrote that ableism “reflects the sentiment of certain social groups and social structures that value and promote certain abilities, for example, productivity and competitiveness, over others, such as empathy, compassion and kindness.” And in Academic Ableism: Disability and Higher Education, Dolmage (2017) says academia “powerfully mandates able-bodiedness and able-mindedness, as well as other forms of social and communicative hypermobility,” a demand that reflects ableism. “In fact, few cultural institutions do a better or more comprehensive job of promoting ableism.” These are “pretty strong claims that we in the academies are situated in ableism,” she concluded.
Ableism versus Disableism3
Chini then contrasted disableism—prejudice against disabled people—with ableism—a prejudice in favor of able-bodied people. “I think sometimes when we have this knee-jerk reaction to say I’m not ableist, we might be more thinking about something like disableism,” Chini said, sharing another Dolmage quote: “Disableism says there could be nothing worse than being disabled and treats disabled people unfairly as a result of these values. Ableism on the other hand . . . positively values able-bodiedness. In fact, ableism makes able-bodiedness and mindedness compulsory” (Dolmage, 2017).
Chini said she finds it useful to separate these ideas out, because while the active discrimination of disableism happens in science, technology, engineering, and mathematics (STEM), ableism without disableism still has consequences. “Disabled people may become hidden, where we are just not planning for them to be in these spaces,” she said, such as a colloquium speaker refusing to use a microphone, assuming there is no one who needs voice amplification or has technology working with the microphone system; purchasing software that is incompatible with screen readers to be used in a class; or requiring specific work hours instead of flexibility for medical appointments or other bodily needs.
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3 There are two spelling conventions “disableism” and “disablism” that are used by various scholars, with both referring to discrimination against or exclusion of people with disabilities. In this publication we defer to the author’s selected preference of the term “disableism.”
Anti-ableism, Chini said, “is a new framework, which involves recognizing able-privilege and using strategies, theories, actions, and practices to actively dismantle it.” She shared a quote from two scholars of that new framework, Lalvani and Bacon, working in early childhood education: “Disrupting ableism can only be achieved if teachers position disabilities as a valued form of human diversity, create spaces for rethinking the constructs of disability and normalcy, and teach their students to embrace differences without stigmatizing them” (Lalvani and Bacon, 2019). A second set of scholars, writing in a postsecondary education context, say “anti-ableism is a systemic approach to both promoting the belonging of disabled students and preventing the exclusion and marginalization of disabled students” (Nieminen and Pesonen, 2022). The aim, Nieminen and Pesonen say, to disrupt the ideals of normalcy and productivity is often underlined in teaching practices. Anti-ableism is looking at both disableism and ableism, Chini said, working to actively include disabled students, to value disabled people, and to work to dismantle ableism.
Talking about Disability and Assumptions in STEM
When talking about disability, it is important to “say the word,” Chini said. “There is no uniform consensus on anything, but we all need to get comfortable saying the word disability” (Andrews et al., 2019). There is less consensus on whether to use person-first or identity-first when talking about people, she added, but she suggested following what the person you are talking about or talking to prefers (Sharif et al., 2022). She will discuss this element deeper in the forthcoming paper.
“What is really important in the STEM community is to learn about and avoid harmful language,” Chini said, adding that lots of terms we use in our everyday life are based on disableism (Brown, 2022). There are many assumptions in the STEM community around disability, she said, but one of them is the idea that the laws for combatting discrimination and creating accessible environments makes it easy for a disabled person to get accommodations. “Many people here can speak to that that is not the case,” she said. She shared a quote from two lawyers writing about Canadian postsecondary education that describes how laws fail to create a “positive obligation” to include students. Rather, “the onus of asserting rights or identifying code breaches rests with students.… As a result, the students who lack the will, endurance, means, or ability to lodge a formal complaint may continue to be victims of discrimination” (Prema and Dhand, 2019). “We are putting
extra work onto the folks who need access to prove their case for getting that access,” she added.
Models of Disability
The two most common models of disability are the medical model and the social model, Chini said: “These models differ in where they situate disability and how they define disability as well as where the burden for change lies.” The medical model situates disability within the person, directly arising from the impairment, and it is often rooted in notions of treatment and care. One positive that comes out of the medical model is medical and technological advances that may lead to improvement in disabled people’s lives, she said. In the social model, disability is situated in social structures and the environment—the disabling results from inadequate and inaccessible environmental conditions. Access is provided by removing social and structural barriers, Chini said, and a positive from this model is a positive integration of disability within one’s identity.
But many policies, stances, and interactions are best described by multiple models of disability, Chini said. The forthcoming paper presents a cluster model for thinking about disability that uses a three-dimensional framework. The medical and the social models are at opposite ends of the “cause of disability” dimension. The effect dimension includes a spectrum of tragedy versus affirmative models of disability. At one end are models that frame disability tragically, “that disability has only negative impacts on a person’s life and well-being,” Chini said, and on the other end are affirmative models “that make space for the positive impacts that disability can have on a person’s life and well-being.” A third dimension are two models that address the dichotomy of ability and disability. Under the minority model, Chini explained, certain characteristics are shared by people with a disability and only people who have those characteristics are considered disabled. “On the other end is the universal model, which considers that all people at some point will acquire a disability, so they’re not going to make a distinction between disabled and nondisabled people,” she said.
Chini gave examples about how this multidimensional model shows up in different ways, including antidiscrimination policies, which reflects social and minority models “because you have to meet a certain definition of disability in order to access protection” and universal design, which can be described by the social and universal models “because it’s taken into account the full range of human variation.”
There are many other models of disability, including critical disability theory, crip studies, critical realism, Deaf epistemologies, among others, that the forthcoming paper will discuss, Chini said. These models highlight “the importance of intersectionality of disability with other aspects of identity.”
Statistics in STEM
Chini also reported on statistics of people with disabilities in STEM. While there are regular updates on these data through the U.S. National Science Foundation (NSF) and other surveys, gaps remain, she said, including bachelor’s degrees earned by students with disabilities, and graduate degree program enrollment. Overall, representation of people with disabilities in the STEM workforce is lower than the wider labor force and total population overall, Chini said, but STEM careers show similar median wages for disabled people compared to nondisabled people. “Very few folks who are funded by the National Institutes of Health [NIH] and NSF identified as having a disability,” Chini added, about 2 percent and 1 percent, respectively.4
Among postsecondary students, self-reporting disability has grown in the past decade. “From 2011 to 2015, the percentage of students who identified with a disability doubled,” Chini said. The increase seems to be from certain types of disabilities being reported, specifically an uptick in those with attention deficit disorder, mental illness, and depression.5
Several possible next steps came out of a discussion of the paper, Chini said, including increased support for disability disclosure, adopting disability status metrics across wider datasets such as the Integrated Postsecondary Education Data System, or IPEDS, and the Graduate Students and Postdoctorates in Science and Engineering. There was also a call for qualitative data about disabled people’s experience in STEM, “so that we are not just counting people … but how we are improving or not improving,” Chini said.
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4 For more information, see https://ncses.nsf.gov/pubs/nsf23315/. See also Swenor and Rizzo, 2022.
REFLECTIONS
Several barriers contribute to the lack of people with disabilities in STEM, said Vivian Cheung, professor of pediatric research at the University of Michigan School of Medicine. One of them is how hard it is to get accommodations. Cheung is a tenured full professor, a member of the National Academy of Medicine, a board member of various nonprofits, and an active researcher who runs a lab—“by many standards, I succeeded in climbing this career ladder …but I also have many scars that I have acquired in my professional journey.” At a previous position she was denied access to a temporary assistant after suffering a spinal cord injury, then was asked to retire after showing up with a wheelchair and then a service dog. “I was probably deemed too disabled,” she said. “My story is not unique, and I think such a story is not in our rearview mirror yet,” she said, and added that for there to be more disabled people in STEM, leaders must not tolerate ableism or discrimination of any form.
Another element is clearing the pathways to STEM careers, Cheung said. Medical students have had to both show documentation and write essays to explain why they need accommodations and “as a doctor, I just do not understand that,” Cheung said. “If I say my patient is Blind, the university should not question that, or ask … are you sure you need accommodations? Instead, they should ask what they can do to help the student to succeed.” These barriers mean that by the time a student has progressed from college to getting an M.D. or Ph.D., they already know that the system is against them, Cheung said, and they will struggle to have a seat at the STEM table. The problem, she added, is inaction and indifference of many people—bystanders need to speak up.
Jae Kennedy, professor of community and behavioral health at Washington State University, pointed out that in the statistics Chini shared, mental health and depression were the largest types of disability. This means the issue of disclosure is critical, Kennedy said. Having a work culture where it is safe and accepted to acknowledge differences, different needs, and disability is an active decision, and the National Academies, NSF, and NIH “have to take the lead on this.” Along with their external stakeholders, the federal research enterprise needs to lead on destigmatizing and encouraging disclosure, even when accommodation is not needed or there is no identified discrimination. “It just needs to be normalized,” he said.
The work on accessibility and inclusion in STEM is as global of an enterprise as STEM itself, said Mahadeo Sukhai, vice president of research
and international affairs and chief accessibility officer of the Canadian National Institute for the Blind. “Half of our postdocs come from outside the United States,” he said. “We need to recognize that scientists flow all over the planet and we collaborate with people all over the planet,” and that needs to be part of the accessibility conversation.
What makes up essential requirements in STEM also needs to be part of the conversation, Sukhai said. STEM values capability, but that is not the same as valuing ability. “In science, we say there are essential requirements … and you have to do them in a specific way. You can’t receive accessibility support; therefore, we can’t work with you as a person with a disability,” he said. “You need to be able to ask the question, If I do them in a different way, does it actually make a difference?” STEM fields are rigid in their thinking about how people are supposed to learn and do their science, like requiring someone to be able to hold a pipette to do a chemistry experiment, Sukhai added. The STEM disciplines are not very good, collectively, about trying to identify “what is it we actually want to learn and what is [it] that we actually want to do,” he said. It is a core challenge in the conversation around accessibility support and inclusion in STEM.
Myths of Ableism
Panel moderator Michele Cooke, a professor of geosciences at the University of Massachusetts Amherst, asked Chini and other panelists to discuss some of the myths about disability that feed ableism, starting with the myth that the Americans with Disabilities Act (ADA)6 “solved everything.”
After the laughter from the crowd ebbed, Sukhai noted that the idea of “accommodations” in the ADA had been misconstrued to be associated with something more like another meaning of that word: a hotel stay—not a requirement to do a job. “We really need to think about what is the accessibility support I need to do my job, and what is the accessibility support I need to learn the thing I need to learn,” he said. “As opposed to, I need help, which then begs the question, well why do you really need help? What are you doing here if you need help.”
Disclosure is fraught for people with hidden disabilities, Kennedy said. Those with invisible disabilities must prove they need help; that is, explain the help they need and justify it. “That is very difficult, particularly for
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6 42 USC 12101, available at https://uscode.house.gov/browse/prelim@title42/chapter126&edition=prelim.
young scientists and scientists in a very competitive market for jobs and grants,” he said. If disclosure could be decoupled from that request, from accommodation, that might solve some of these problems, he added.
A different take on the ADA myth is that it assumes the person knows they have an access need, Chini said. “The ways that ableism shapes how we do science … impacts kids and people to think that they don’t belong in what we are doing and they can’t ask for accommodation,” she said. Cheung echoed Chini’s comment and said, especially for young scientists, barriers needed to be lowered. NSF, NIH, and other organizations can help to make it possible for students to ask for accessibility “without having to be retraumatized over and over again,” she said.
The second myth is that if people are not asking for adjustments to the workplace or for themselves, the workplace must already be fully accessible and not need any changes, Cooke said. What can people do in our various roles to make disclosure safer? she asked. Acknowledging disclosure is a risky action, and not without consequences, Kennedy said, and institutions need to support people who do so. Leaders of all kinds can role model this, but particularly, senior leaders in academia and the federal research enterprise can disclose their own disabilities. “We need to have people that are braver than me saying this earlier and more often in their careers,” he said.
One of the useful things in learning about different models of disability is helping us examine how we think through things, Chini said. Raising up Stephen Hawking as the example of a disabled person in physics not only has gendered and racial significance but implications for disabled people at large. “We need to be careful that we’re not falling into this tragedy model of disability, of saying you have to be this exceptional case in order to overcome your disability and be in the space,” she said.
Sukhai said that leadership in organizations must move the conversation away from an “ask” mentality and, instead, think about ways that the workplace, the lab environment, or the training environment can be inclusive from the start. “Sometimes it could be as simple as that, to say: I invite the conversation, but even if you don’t feel comfortable, we can still do things to make this place inclusive.”
Leadership that Challenges Ableism
From the virtual audience, Kate Mittendorf, a senior staff scientist at Vanderbilt-Ingram Cancer Center, said STEM needs leaders who will not
tolerate ableism, and asked the panel: What would that look like, especially when reporting discrimination or ableism results in retaliation?
Hiring committees need to ask point-blank during the hiring process, What would you do if someone brings a complaint or report to you?—because it is not uncommon, Cheung said. “When someone never reports such events or describes how they deal with it, we sort of know they are failing to do so.” Leaders need to be accountable to the board when they fail to account for discrimination and retaliation. Ableism can rear its head in ugly ways, but more common microaggressions can be just as damaging, Sukhai added, and leaders can respond to that. An anti-ableist leader is the vice provost who moved a meeting location because the lighting was so poor, or the CEO who said if Sukhai could not read the documents, they would not read them and would refuse to discuss them until there was an accessible version.
REFERENCES
Andrews, E. E., A. J. Forber-Pratt, L. R. Mona, E. M. Lund, C. R. Pilarski, and R. Balter. 2019. #SaytheWord: A disability culture commentary on the erasure of “disability.” Rehabilitation Psychology 64(2):111.
Brown, L. X. Z. 2022. Ableism/Language (blog, September 14, 2022), Autistic Hoya (website). https://www.autistichoya.com/p/ableist-words-and-terms-to-avoid.html.
Dolmage, J. T. 2017. Academic Ableism: Disability and Higher Education. Ann Arbor: University of Michigan Press.
Lalvani, P., and J. K. Bacon. 2019. Rethinking “we are all special”: Anti-ableism curricula in early childhood classrooms. Young Exceptional Children 22(2):87–100.
Nieminen, J., and H. Pesonen. 2022. Anti-ableist pedagogies in higher education: A systems approach. Journal of University Teaching and Learning Practice 19(4).
Prema, D., and R. Dhand. 2019. Inclusion and accessibility in STEM education: Navigating the duty to accommodate and disability rights. Canadian Journal of Disability Studies 8(3):121–141.
Sharif, A., A. L. McCall, and K. R. Bolante. 2022. Should I say “disabled people” or “people with disabilities”? Language preferences of disabled people between identity- and person-first language. In ASSETS ’22: Proceedings of the 24th International ACM SIGACCESS Conference on Computers and Accessibility, Athens, Greece, October 23–26, 2022. New York: Association for Computing Machinery. https://doi.org/10.1145/3517428.3544813.
Swenor, B., and J. R. Rizzo. 2022. Open access to research can close gaps for people with disabilities. STAT “First Opinion,” September 6, 2022. https://www.statnews.com/2022/09/06/open-access-to-research-can-close-gaps-for-people-with-disabilities/.
Wolbring, G. 2008. The politics of ableism. Development 51(2):252–258.
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