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Introduction
BACKGROUND AND MOTIVATION FOR THE WORKSHOP SERIES
People with disabilities are the largest minority group in the United States. While nothing about science, technology, engineering, and mathematics (STEM) education, jobs, or workplaces would seem to inherently exclude people with disabilities, in practice, stigma and discrimination continue to limit opportunities for disabled people to fully contribute to and be successful in the STEM ecosystem. The planning committee for Beyond Compliance: Promoting the Success of People with Disabilities in the STEM Workforce of the National Academies of Sciences, Engineering, and Medicine, with funding from the U.S. National Science Foundation, organized a hybrid national leadership summit and virtual workshop series to address and explore issues of accessibility and inclusivity in STEM workplaces. Across the 5 days of workshops, dozens of panelists spoke about their personal and professional experiences of ableism and barriers to full participation in the STEM workforce, as well as identified positive examples of mentorship and efforts to create fully inclusive STEM spaces in education, labs, the private sector, and professional development settings.1
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1 In the development of this workshop series, universal design and accessibility consultants from the DO-IT Center at the University of Washington were hired to help create the most inclusive event possible. As a supplement to this workshop series, DO-IT authored a paper that describes how the design and delivery of accessible events
The planning committee included STEM educators, researchers, private-sector trainees, and advocates, all of whom identify as having a disability. The committee designed the discussions for a wide range of people involved or interested in the STEM ecosystem, said Bonnielin Swenor, chair of the committee and director of the Johns Hopkins Disability Health Research Center, including trainees, researchers, policymakers, and those in professional organizations, private-sector jobs, nonprofits, and more. The discussions were intended to be welcoming for both people new to discussions of disability and anti-ableism and those who have made it their life’s work, she added.
RECURRING TERMS AND THEMES
Speakers across the workshop series discussed a variety of terms and concepts around disability. While other chapters will feature speakers who further define and expand on some of these concepts in detail, including discussions of commissioned papers, a few common terms and themes are shared here with speaker-offered examples to place all discussion comments in context.
Ableism and Disableism2
Ableism is a type of bias or prejudice that favors able-bodied people, while disableism disfavors disabled people or discriminates against them. Further distinctions between these two biases and examples are discussed in depth in Chapter 3, where Jacquelyn Chini, professor of physics and undergraduate program associate director at the University of Central Florida, noted that ableism comes with “the assumption, again possibly unexamined, that nondisabled people are inherently superior to disabled people” and often happens when educational and workforce spaces assume no people with disabilities are present or fail to consider them.
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can help to promote a culture of equity and inclusion. This paper is available at https://nap.nationalacademies.org/resource/27245.
2 There are two spelling conventions “disablism” and “disableism” 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.”
Strengths Mindset or Perspective
A strengths mindset is understanding, identifying, and promoting the unique contributions or benefits that people with disabilities bring to an educational or workplace setting. Planning committee member Jordan Rodriguez said that many companies and people think of disabilities from a deficit perspective rather than a strengths mindset, for example, “This Blind person uses a screen reader, so they can read text a lot faster than most people, and actually are better at picking up on typos” and other errors. Caroline Solomon, Director of the School of Science, Technology, Accessibility, Mathematics, and Public Health; professor of biology; and Interim Public Health Program Director at Gallaudet University, also gave the example of deaf researchers being able to communicate underwater during field scuba experiments, something that is inaccessible to hearing people who do not sign.
Universal Design
Universal design is a process or system that designs for all abilities, whether in physical spaces or in curricula. A commonly cited example by workshop speakers of positive outcome for universal design is the “curb-cut effect.” Mariah Lynn Arral, National Institutes of Health fellow and doctoral candidate at Carnegie Mellon University, described the eponymous curb-cut effect: providing accessibility for wheelchair users may be the motivation behind putting curb-cuts in sidewalks, but the change positively affects a variety of people, including parents with strollers, people carrying luggage and grocery carts, and those with temporary injuries. Marcia McNutt, president of the National Academy of Sciences, also gave an example of universal design on oceanographic ships that improved accessibility for people with mobility limitations but were also beneficial for all passengers. “It made the ships more navigable; it made them easier places to work,” she said. (See Chapter 4 for an in-depth discussion of universal design for curricula.)
ORGANIZATION OF THE WORKSHOP SERIES AND PROCEEDINGS
The workshop series was designed, in partnership with the DO-IT Center at the University of Washington, to be as fully accessible as possible. The national summit had both in-person and virtual attendance options, and the four remaining workshops were all virtual.
Throughout the 5 days of the event, American Sign Language (ASL) interpretation and communication access real-time translation (CART) were provided, as well as real-time captions on the streamed video. Agendas with large text were posted on the website ahead of the workshops. During the leadership summit at the National Academies’ Keck Center, attendees were able to use a quiet room and overflow space, with different temperatures, and they had access to refrigerators, freezers, and small sensory and stimming aids. All sessions were recorded and posted online with captions and ASL interpretation intact.
Speakers varied in how they described disability, some using person-first language (i.e., “a person with a disability”), while others used identity-first language (i.e., “a disabled person”). These proceedings reflect the mix of language used throughout the workshop series, including an individual speaker’s preference, if specified. Each speaker also gave a visual description of themself as part of their introduction to support access for those with low or no vision. These visual descriptions have not been replicated in the proceedings, and disclosure of disability is included when relevant to the speaker’s quoted comments.
This proceedings is organized into nine chapters, each covering a broad topic of discussion during the workshop event. Chapter 2 covers a high-level discussion with McNutt and Karen Marrongelle, chief operating officer of the U.S. National Science Foundation, as well as a discussion identifying what equity could mean for science in general and disabled scientists specifically. Chapter 3 introduces a paper on language models of disability commissioned for the workshop, and panelists’ reflections on these models. Chapter 4 focuses on cultivating accessibility in educational spaces and pathways. Chapter 5 focuses on disabled students’ lived experience in education and the transition to work. Chapter 6 focuses on mentorship across the STEM ecosystem, both in education and the workforce. Chapter 7 introduces a paper on workforce barriers and reimagining access in the workplace. Chapter 8 discusses creating disability-inclusive workforces and workplaces from a variety of perspectives. Chapter 9 covers reflections on the workshop from all committee members, as well as calls to action.
OPENING REMARKS
Swenor opened the leadership summit by saying these discussions were happening at “what feels like a really important moment.” The COVID-19 pandemic, climate change, and advances in AI (artificial intelligence), show
how STEM affects lives every day, Swenor said, and how the United States needs to take advantage of advancing science and innovation the best it can. “We know that that will take all of us, an all-hands-on-deck approach,” she said, adding that it is going to take “tearing down the barriers that have kept so many people out, including people with disabilities.”
As a scientist with a disability, she has spent much of her career trying to “enhance inclusion of people with disabilities in STEM.” The barriers for scientists with disabilities are “formidable” and challenges exist across the ecosystem, she added, from education to getting a job to entering leadership. It is an inconvenient truth that STEM has “not been designed for us. It’s actually been designed to keep us out,” Swenor said. Most of those working in science with disabilities are doing so “not because we have overcome anything but because we have persisted. Persisted in a system that does not assume we should be here or that we will be here.” While persistence is often viewed as a positive attribute, “we really have to think deeper … and realize that for those that haven’t had to persist in the same way, there is a role and responsibility to change the system,” she said. “We have taken, head on, the idea that people with disabilities are lesser … and attack the notions that including people with disabilities is just too complicated, is inconvenient or even too expensive.” It is “beyond time” to reimagine STEM so that people with disabilities are included from the start, she continued, “not just because it is the right thing to do but because it is good for science.”
Swenor identified that, over the course of the event, speakers would be discussing what disability means to people with disabilities, how the barriers to STEM are exponentially greater for people with disabilities from other underrepresented groups, and how to improve the STEM ecosystem to make sure people with disabilities feel like they belong.
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