7

Understanding Workforce Barriers and Reimagining Access

BARRIERS AND UNMET NEEDS

Another workshop began with Kate Mittendorf, a senior staff scientist at the Vanderbilt-Ingram Cancer Center, presenting an overview of their commissioned paper¹ on common workforce barriers to meaningful access in science, technology, engineering, and mathematics (STEM). “The conclusion of this review is not some checklist whereby you can just go mark off your access needs: boom, done, access is over,” Mittendorf said. Instead, they grounded their work in thinking of access as a verb, using a familiar example: the classic wheelchair icon, changed to show the person leaning forward with their arms behind them, as if they are pushing the wheelchair, and angled cutouts in the circle to indicate motion. “It’s not to say that every person who uses a wheelchair is able to manually push them but to instead reframe access as this active rather than passive concept,” they said.

While checklists can be excellent tools to begin to build access, many access barriers in the workplace are rooted in ableism and resulting disableism,² Mittendorf said: “Creating meaningful access requires active

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¹ Mittendorf, 2023, Reimagining Access: Critical Examination of Barriers to Full STEM Workforce Participation for Disabled Individuals (https://nap.nationalacademies.org/resource/27245).

² 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.”

engagement.” This extends to universal design, they added, quoting from Jay Timothy Dolmage’s (2017) Academic Ableism: Disability and Higher Education: “Universal design should be registered as action—a patterning of engagement and effort.… Such [check]lists invite us to believe that universal design would stop if all the boxes were checked. We should be more interested in places to start thinking, doing, acting and moving.” Mittendorf classified the barriers in the workforce into four high-level categories: infrastructure, policies and procedures, culture, and unmet needs, highlighting a few examples of each.

Infrastructure

Infrastructure is most commonly thought of as the built environment, and the “ADA [Americans with Disabilities Act³] is pretty insufficient for defining access for built environments, especially specialized spaces like laboratories,” they noted. But infrastructure also extends to information technology decisions a workplace makes, inequitable access to training and conferences, and lack of needed insurance benefits for disabled employees, including mental health care.

Because software—from a human resources (HR) portal to video conferencing to word processing—can completely vary in accessibility features, an organization’s selection of programs is significant, Mittendorf said. At conferences and career development training it is disabling not to be able to access materials or physical locations. In one example they highlighted, the lack of a ramp to the podium prevented speakers from taking the stage on their own panel. “Conferences are historically very difficult to access, and that creates career barriers for STEM folks with disabilities,” Mittendorf said. “So you have to weigh meeting with like a million access barriers against the career opportunities and networking conferences afford, every time one comes up in the field.”

Policies and Procedures

Blanket job description policies from HR are one example of policies and procedures building in barriers to disabled people in STEM. Mittendorf explained that their own job description includes physical requirements

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

unnecessary to their work and they cannot accomplish, but they are there because HR requires a set of the same skills to be in every listing. “When those requirements are listed, you have to think to yourself, Are these … meant to screen out people like me?” they said. “And is this intentionally an exclusionary workplace?”

Accommodations can also have a “double-edge sword,” through framing access as a privilege or a gift. This framing can be harmful to the perception of the disabled person in the workplace, Mittendorf noted, and policies that place a high emphasis on legal compliance turn into gatekeeping. This emphasis forces those with disabilities to prove their disability through “detailed descriptions of our illnesses and disabilities” and normalizes what Mia Mingus calls “forced intimacy,”⁴ Mittendorf explained.

The process of accommodations can be lengthy and costly, requiring several rounds of medical documentation, they added, which is increasingly burdensome for marginalized people whose access to health care could be affected. “The whole time they are going through this process, they are working with an unmet access need, and that means you can’t work the way you want to or maybe you can’t work at all, and that sets us at an unfair disadvantage,” Mittendorf said. While these barriers are grounded in a wider ableist culture, they added, STEM fields have specific values that can be at odds with access: the medical model, assumption of nondisabled objectivity, productivity, and independence. Because the medical model was created by a nondisabled scientific workforce, it assumes a nondisabled lens is the objective one. This applies to both interpreting data, Mittendorf said, as well as how disabled people are viewed in the workplace.

Culture

The cultural values of high productivity and the “pedestal position” of the independent investigator contribute to negative stereotypes of scientists with disabilities, Mittendorf said. “I’m aware that having a sparse publication record because I’m not allowed to work full time … is inevitably going to have a negative impact on me,” they explained. Reframing STEM values through a disability justice lens, such as focusing on interdependence, not independence, “can foster a more collaborative and multidisciplinary

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⁴ Mingus, Mia. “Forced Intimacy: An Ableist Norm.” Leaving Evidence (blog). Wordpress.com. August 6, 2017. https://leavingevidence.wordpress.com/2017/08/06/forced-intimacy-an-ableist-norm/.

approach,” they added. “Interdependence is key to good collaborative science.”

Unmet Needs

Even with accommodations in place, individuals may still have unmet access needs because a workplace has taken a descriptive approach, only offering “a menu of all the possible accommodations that a workplace is willing to give you,” Mittendorf said. Each individual and disability is unique, so it can be impossible to anticipate every need. A creative approach that centers the individual is an example of access as a verb: “When you work with an individual to identify an unmet access need and creatively meet them, you’re more likely to bring them access,” they noted.

TOOLS AND REIMAGINING JUSTICE

Mittendorf highlighted some tools for both people in STEM fields with disabilities and employers, including the Employer Assistance and Resource Network, or EARN; AccessSTEM, the Job Accommodation Network, resources collated by the Royal Geographic Society, and SIGACCESS, among others.⁵ They also encouraged rethinking meaningful access to STEM and reimagining justice for the disabled STEM workforce by applying concepts from the disability justice movement.

Historically, people with disabilities have not been able to participate in the “acceptable knowledge about us,” Mittendorf said, because of a combination of assumptions of objectivity and what they call “academy lock-out.” Instead, disabled people generate knowledge in the margins—memoir, blogs, social media—simply by navigating a world where “our access needs are going unmet by design.” These “cripsistemologies,” as Lisa Duggan describes them, should not be counted less (Hammel, 2006). When “granting” accommodations, whose knowledge of access are we centering? Mittendorf asked.

Mittendorf also questioned how the STEM workforce operates: Is there really only one way to work? To illustrate the value of interdependence, they related a Glen Everett story in the essay collection Uncharted

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⁵ For more information about EARN, see https://askearn.org/; for AccessSTEM, see https://www.accessstem.org/; for the Job Accommodation Network, see https://askjan.org/; for the Royal Geographic Society, see RGS, n.d. (in References); and for SIGACCESS, see http://www.sigaccess.org/.

by Skylar Bayer and Gabriela Serrato Marks.⁶ During field research, Everett was paired with a colleague whose main role was to knock on inaccessible doors and ask people to speak with Everett. But when they arrived at the first accessible street, they found it was entirely residents who did not speak English but did speak his colleague’s native language. “To me it really shows that the disability justice value of interdependence can have a big impact on the way we accomplish our work,” they said.

Meaningful access to workplaces and workforce “comes down to culture” Mittendorf said. They suggested publicizing accommodation processes to all employees when they are introduced to the workplace, explaining how it works and encouraging new employees to speak up about individual unmet access needs that prevent them from being successful in the role. Managers, supervisors, and HR staff need to be trained to move away from “access as a gift” mindset, they said, instead thinking of access as “something everybody should be creatively trying to build together.”

REFLECTIONS

Anita Stone Marshall, a lecturer in geosciences at the University of Florida and executive director of the International Association for Geoscience Diversity, began the reflections on Mittendorf’s paper by asking how to better use existing tools and how those tools can be improved.

Process is just as important as tools, especially in the private sector, said Sheri Byrne-Haber, an accessibility architect for VMWare and the author of the This Week in Accessibility blog.⁷ “We need to make sure that the processes have been established to make sure that the tools get used,” she said. A tool-based accommodation can also be a solution for one person, but it does not remove the actual barrier, Byrne-Haber said, giving the example of someone assuming the need is the same for every wheelchair user. “That isn’t always the case, and at the end of the day, you’ve removed the barrier maybe for the one wheelchair user, but you haven’t removed the barrier for everybody.” This is especially not recognized with progressive or intermittent disabilities, she added. What works today may not work next week. “The accommodations teams will think, Okay, I solved this problem, I’m closing

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⁶ Skylar Bayer and Gabriela Serrato Marks, Uncharted: How Scientists Navigate Their Own Health, Research, and Experiences of Bias (New York: Columbia University Press, 2023).

⁷ Available at https://sheribyrnehaber.medium.com/this-week-in-accessibility-what-we-can-learn-from-the-webaim-million-2c11540fd46d.

out the case,” she said. “The person might have to come back … later and say, Hey, you know what? This isn’t working for me anymore.”

Rory Cooper, founding director of the Human Engineering Research Laboratories at the University of Pittsburgh, also pointed to tools being most useful when workforces can reach “critical mass” on accessibility as a practice and as part of the culture. When there are enough people with disabilities—disclosed or not—in the organization working alongside their colleagues without disabilities, culture change is possible, Cooper said. That is why he advocates “very strongly” for hiring more disabled employees and listening and learning from them. “Accessibility is just an entry point,” he said. “The real point is to be productive, to have career options, career pathways, and we can do that by integrating ourselves into the organization, into the community.”

Joey Ramp-Adams, founder and CEO of Empower Ability Consulting, Inc., gave an example of what happens when disabled people are not fully integrated into STEM workforces, especially as decision-makers. While working with a tier one research university on their medical school’s diversity, equity, and inclusion (DEI) strategic plan, she noticed there was not a single mention of disability in the entire document. Disability had been “completely overlooked” in the plan until Ramp-Adams brought it to their attention. “So, obviously, no one on the committee was disabled. No one even noticed for 2 years,” she said. Her own experience working as a consultant has repeatedly showed companies will prohibit discrimination for people with disabilities, but ignore the stigma, she said.

While we often think about tools as physical objects or a piece of software, Marshall noted, expanding the idea of access tools to include people and animals may require additional considerations. Ramp-Adams said she deals every day with people wanting to pet and interact with her service dog, which in itself is disabling. There is also common misunderstanding that service dogs need to be with their person 24/7, which leads to some thinking anything less than that means they are misrepresenting their need, she added. “Someone who uses a service dog for balance and grace can use a wheelchair for a day,” Ramp-Adams said. “Sometimes with invisible disabilities, people can also manage their disability for the short term, away from their service dog,” including medication, human assistants, or other means. Education about how to interact with service animals, human assistants, and the broader conceptions of accessibility tools is needed, she added.

Cooper noted that assistance can also include help with specific pieces of equipment or processes, for example, a medical student who uses another

person to demonstrate their skills about how to do a physical exam. It is crucial to think about such assistance as part of “team science” and wider collaboration, he added, and think about similar ways nondisabled colleagues are helped by the same or other tools. “In the labs we work in, the buildings we work in, they’re all tools … whether they drove to work or took public transportation or walked or rode a bicycle, they’re all tools,” he said. “What I find funny is that every organization is pretty quick to adapt tools for productivity, and not tools for accommodation, but really the tools for accommodation are productivity tools.”

Marshall asked what policymakers and decision-makers should keep in mind when trying to remove barriers in STEM workplaces. Byrne-Haber noted that, currently, there is not one standard for digital accessibility adopted by the federal government, and it has led to different court decisions in different districts. Making a version of the global Web Content Accessibility Guidelines, or WCAG, standard⁸ and associated with the ADA would “establish in concrete what the expectations are,” across the United States, Byrne-Haber said.⁹ “Because right now, there’s room for companies to kind of ‘weasel out,’ saying, Well, I don’t really know what I’m supposed to be doing, because there’s no official standard.”

Cooper also cited the current income cap for coverage of personal attendant or personal assistant care, calling for it to be removed. Many people might get a STEM-related degree but “can’t work because they would lose their medical assistance care.... They get stuck in an unrealistic position.”

Byrne-Haber pointed out that the pipeline to get disabled people into STEM careers was very different on a state-by-state basis because of how each state’s education system treats people with disabilities. She mentioned Massachusetts has an “outstanding” high school graduate rate for people who have IEPs (Individualized Education Programs), or 504 plans,¹⁰ which would be largely children with disabilities, while Nevada’s rate for similar students is “atrocious.” “When you’ve got poor graduation rates, you’re

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⁸ For more information, see https://www.w3.org/WAI/standards-guidelines/wcag/.

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

¹⁰ For more information on IEPs, see https://www.edweek.org/teaching-learning/what-is-an-iep-individualized-education-programs-explained/2023/07; for more information on 504 plans, see Section 504 of the Rehabilitation Act of 1973, as amended, at https://www.dol.gov/agencies/oasam/centers-offices/civil-rights-center/statutes/section-504-rehabilitation-act-of-1973.

going to have poor college attendance rates … poor grad school rates,” she said. “People drop out because they can’t handle both the financial burden of being a student and the financial burden of having a disability, because there is a tax to us.” She called for more financial support for tutoring and transportation.

Ramp-Adams said one of the barriers Mittendorf identified, access fatigue, is something she sees every day. Students she works with are constantly forced to provide medical documentation to enter spaces with their service dogs, and “reasonable accommodations” are left up to very subjective interpretation. In one day, she can help people in the same state with very similar situations, but with completely polar opposite results. “These students just burn out and they quit, and we lose them out of that pipeline,” Ramp-Adams said.

As the panel finished their reflections, two speakers noted how important it was to include disability and accessibility into workplace DEI efforts. “If I could wave a magic wand, it would be to make sure that any time DEI comes up, include disability,” Byrne-Haber said. “There is no reason that we should be excluded or [out of] benign ignorance left out of DEI initiatives.” “We are the largest minority, and we need to be included,” said 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.

REFERENCES