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Creating Disability-Inclusive Workforces and Workspaces
THE COMPLEXITIES OF WORKPLACE ECOSYSTEMS
During the workshop summit, panelists from different parts of the science, technology, engineering, and mathematics (STEM) ecosystem—the private sector, federal funders, publications, universities, and philanthropy—discussed their perspectives on including disabled people fully in the workforce. “If we are going to disrupt ableism, there is opportunity for multiple sectors to come together to do that,” said panel moderator Andrew Imparato, executive director of Disability Rights California and a member of the Beyond Compliance: Promoting the Success of People with Disabilities in the STEM Workforce Committee.
National Institutes of Health’s Role
Alison Cernich, deputy director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH), said that “with great humility,” NIH had made a start on addressing ableism both internally and externally. That work was driven by a committed group of people inside and outside of NIH who produced a report in December 2022 on ensuring inclusion of the disability community in the institutes’ work, including a roadmap that was “immediately integrated” into an NIH-wide strategic plan on diversity, equity, inclusion, and accessibility (DEIA). She noted that NIH knows
more needs to be done to promote inclusion. “We need to address ableism in our training, in our communication, in [our] policies, and in our structures. We really need to make sure that anti-ableism is a core component of our DEIA work,” she said, adding she expected to be heavily involved in this.
NIH’s role as a funder is also crucial, Cernich said, both in the topics they fund and how disabled researchers are involved. NIH currently funds extramural research that examines bias and discrimination consistent with ableism, but “we need to do more to drive evidence in this area,” she said. One example, she added, was recent funding of the work of Lisa Iezzoni1 looking at discrimination and stigma by medical providers, which Cernich said calls out “the need for training and education on how to provide care that respects the health and wellness of people with disabilities.”
NIH is trying to address inaccessibility in their own work ecosystem, including a way to report inaccessibility or environmental barriers on the NIH campus, and better compliance with section 508,2 “which I’ve told people is not a strategy, but a legal requirement,” she emphasized. “We are engaging our community to help guide us,” Cernich said, specifically thanking Theresa Cruz, director of the NICHD National Center for Medical Rehabilitation Research, who sponsored a workshop on ableism in medicine and clinical research.3 Her takeaways from that workshop were that ableism is “pervasive” in research, and people with disabilities are often excluded from NIH studies with “little scientific justification.” In Cernich’s estimation, “people with disabilities need to be part of research teams to broaden perspective and ensure relevance of studies to the community.”
Philanthropy
As philanthropy can be beneficial to scientists’ funding, Imparato invited Emily Harris, executive director of the Disability and Philanthropy Forum, to give an overview of where the sector was on disrupting ableism. The biggest issue, up until recently, Harris said, was that most foundations ignored ableism and ignored “that so many people that they serve are
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1 For more information, see https://www.healthaffairs.org/doi/10.1377/hlthaff.2022.00475.
2 Section 508 of the Rehabilitation Act of 1973, available at https://www.section508.gov/.
3 For more information, see https://www.nichd.nih.gov/about/meetings/2023/042723.
disabled.… We have to recognize that our sector really has been behind.” Her group was recently able to examine 2019 grant data from Candid4 and learned that “what the disability community has been saying all along is absolutely right”: only 2 percent of U.S. foundation funding went to disability issues that year. The lion’s share of that 2 percent was only for services and supports, a category that is more based on the idea of disabled people needing protection, rather than looking at agency of people with disabilities, Harris said. “In fact, strikingly, we found that only 1 penny of every 10 dollars of U.S. foundation funding … went to disability rights and justice funding, aiming at dismantling barriers for full participation and promoting systems change.”
There has been some progress since 2019, Harris said. One of the tools her group has created is a disability-inclusive pledge that includes eight areas for growth, and they now have 78 philanthropic organizations signed on. “The important thing is that CEOs are challenging their peers to lead for inclusion, and we’re starting to see results.” Specific actions she has seen foundations take include training on inclusion for boards and staff, and asking about accommodations for events for everyone to fully participate. “These are very low-bar places to start, and over time, we are seeing growth to more complex actions,” she said, adding they are seeing foundations starting to move money through disability-led funding groups, including the Disability Inclusion Fund at Borealis.5 Foundations are also recognizing that disability is part of every issue, Harris said. One research funder is now asking grantees to report how many disabled scientists are on panels or projects, “signaling to grantees that they care about that,” she said.
Private Sector
Leadership has an important job when setting expectations and integrating accessibility in the private sector, said Angela Lean, senior business program lead of Accessible Employee Experience at Microsoft. The company’s CEO, Satya Nadella, is a parent of a person with a disability, and has “done a wonderful job of actually tying accessibility to our overall corporate mandate” of empowering organizations and people to do more, Lean said. “I think assistive technology does that for people with
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4 For more information, see https://candid.org/.
5 For more information, see https://borealisphilanthropy.org/disability-inclusion-fund/.
disabilities,” she said, and that mandate and Nadella’s leadership “gives us a lot of wind at our back at the accessibility office in terms of what we are trying to achieve at Microsoft and beyond.”
Expanding workplace accessibility is also a business opportunity for Microsoft and their customers, Lean said, noting a recent statistic from the World Health Organization that a billion people, or 15 percent of the global population, have a disability: “Those are our customers,” she said, adding that while opportunity was different in the academic world, it is about “making yourself more relevant to more people.”
Accessibility is a fundamental right and innovation, Lean said, and her office works to take lived experience and apply it to product development. They have information desks that take feedback from both customers and employees about how the technology is or is not working for them. “We really invoke the notion of design for one and extend it to all,” Lean said, explaining feedback about PowerPoint from colleagues with low vision is applied to the overall roadmap, not just an immediate fix.
Scientific Publishing and Universities
Holden Thorp, editor-in-chief of Science, said journal accessibility had improved since the days of “printed materials that were placed in heavy, hard-bound journals on high shelves,” but additional changes would have to contend with the current structure of their academic publishing industry. “The good news is you don’t have to convince that many entities to continue to make improvements; the bad news is no individual journal can do it on their own,” he said, adding “Science has a powerful voice and we love to use it anytime we can, to make journal articles more accessible.”
He is concerned about how open-access licenses allow for altered copies of papers that could be even more inaccessible than official versions, as well as the pressure of focusing on the quantity of academic publishing. “What do we do to … account for the fact that not everybody has the opportunity to create research at the same rate as everybody else?” he asked. “The journals can’t fix that problem on their own, but if we are really going to dismantle ableism, it has to be the case.”
Barbara Snyder, president of the Association of American Universities, noted that universities have lots of organizations focused on compliance. “There is nothing wrong with that, but of course, it doesn’t get you where you need to go,” Snyder said. While universities have disability and inclusion offices, often students, faculty, and staff still have to advocate for
themselves while navigating the campus, she said. “That can be daunting and exhausting.”
Snyder also echoed a comment made by Cernich, saying universities not only had the challenge of not enough researchers with disabilities bringing their perspective, but the focus of research “on a small swath of the population, on mostly white men, for the longest time.” The goal for research and education, she said, should be “to make sure that everybody is at the table who needs to be at the table. I think that is not happening quite yet, but [it] is starting to happen.”
Action Items
Imparato asked the panel to think about what action steps their industry, sector, or company could take that would make a difference in terms of disrupting ableism. The most important thing, Cernich said, is that anything done needs to start with the disability community, and it cannot be solely one person or group of people representing everyone with a disability. Changing the mindset in NIH is hard because it is a medical model organization, she added, and getting to full participation for disabled scientists means shifting the conversation toward a social model. “I think the only way to do that is to meaningfully engage with the organizations and people who are wanting to be a part of the STEM community and are finding barriers, and then asking them how do we work with you to overcome those?” It cannot be unilateral, but changes have to start with NIH’s own employees and intramural researchers. “If we are not doing it internally, how can we expect universities to do it?” Educating extramural scientists and adjusting policies for grants may be a way to integrate changes more widely. “They are receiving federal funds. How are we bringing them into the community to understand that those indirect costs have to support some of this?” she asked.
Harris said foundations need to move away from their tendency to compartmentalize, instead recognizing the overlap and connecting disability explicitly to their funding focuses. “If you fund climate justice work, who do you think is most impacted by climate change? If you are funding STEM education, who do you think are the students with the most potential but the least resources? If you want to break the school-to-prison pipeline, who do you think are the first children to be caught in that system?” Taking any funding issue and asking disabled people how they would solve those challenges will allow funders to begin to see the connections, as well as fund solutions that are going to be better for everyone.
Presidents and chancellors need to be talking more about disability, both on campus and in their broader community, Snyder said, because that is a signal to the university that this is an important issue. She also suggested universities need to consider universal design not just for physical spaces but for curriculum as well.
Thorp said STEM needs to move away from the idea of “doing more research is always the best possible thing. For the last 80 years in this country, we built up as the goal, to have a big lab, a high h-index, and a lot of citations, and a lot of grant money. As a result, everybody is so busy pedaling these bicycles that nobody is stopping to think about the people that are actually there,” he said. And “almost every bad thing about STEM is a readout of the fact that we are trying to do too much science instead of doing better science,” including not valuing people who cannot churn out a lot of science, underpaying graduate students and postdocs, and overworking administrators. As editor-in-chief, he can keep talking and writing about this problem, but “we need more people to have the courage to say that.”
Lean identified three areas that she thinks are leading actions in the private sector that are also applicable to academia. First, inclusive hiring and representation on panels and on grant decisions. This would include setting up employees with disabilities for success in the onboarding process. Second, tracking data to inform investments and business decisions that improve accessibility. “Self-ID is a big movement in [the] tech industry,” she said, because it gives the employees an opportunity to say broadly if they have a disability or not. “It is not disclosure, but about recognition of who in the organization has a disability.” Third, Lean suggested creating documents and content with accessibility in mind, including Microsoft’s accessibility checker. “That’s a very easy actionable thing for folks to do on a daily basis,” and it has huge implications.
What Should Be Measured?
Mahadeo Sukhai, vice president of research and international affairs and chief accessibility officer of the Canadian National Institute for the Blind, asked the panel’s thoughts about how campuses and workplaces can encourage measuring inclusion, and what should they be measuring?
While “very important things happen on our campuses that cannot be measured,” Snyder said, it is important to measure things that you care about, and to do so accurately. She was interested in datasets on self-identified disabilities of students, faculty, and staff, but also in the alumni
population. On the research front, Snyder thought it was important to track the number of researchers, including postdocs and graduate students, with disabilities, the topics they were researching, and how they were doing compared to other populations and the university population at large. University offices of accessibility or similar groups keep track of how many people they serve each year, she said, but “I don’t know if they track their satisfaction.” “I would like to know how … the people they have served think about the service they got and whether it was effective in allowing them to do their work to the best of their potential, whether they are a student, employee, faculty member, you name it.”
How to Approach Administrators or Leaders?
Ann Jeffers, professor of civil and environmental engineering at the University of Michigan, said Barbara Snyder’s advice was aimed toward administrators, but the “more likely scenario” is that people with disabilities will have to bring problems to the attention of administration. Jeffers asked what her suggestions would be for a group of faculty who wanted to sell the university administration on the idea of becoming a more inclusive campus from the perspective of disability.
“I hope that you would not have to sell” the importance of everyone taking advantage of what a university has to offer, Snyder said. “On the other hand, I know that there are competing priorities, and administrators have to make difficult decisions sometimes.” She suggested starting the conversation anyway, bringing specific ideas about how to resolve the problems they are seeing and be willing to engage in a back-and-forth dialogue. Identifying the benefits for the university is also important, she said. “I hope that each one of our campuses would say … we want to be the most inclusive campus in the country, in the world.”
Thorp, who previously served as a university chancellor and provost, said his more disruptive answer is “campus activism does work.” “I do agree with Barbara that it is good to start off developing a relationship with the administrators,” he said. But administrators go from crisis to crisis, he added, distracting them from issues like a more inclusive campus. “Unfortunately, that means you may need to create a crisis in order to get them to work on this.”
“Making it come to life” for people you are talking to is really important anywhere you work, Lean said. When people she works with at Microsoft think accessibility is a niche issue, she related the fact that her
difference—not being able to use one arm—could happen temporarily or intermittently to anyone, for instance, if they broke their arm or needed to carry a baby. “I cannot tell you the power of walking into an executive team meeting with some of our accessible products, and when they see the innovation and they see the relevancy of what their products can do for people who have differences, it’s a very powerful moment,” she said. She often starts conversations asking what is similar about a pair of shoes and a diaper. It is hard to use one hand to put a diaper on a child or tie your own shoe. People often told her they did not think about it that way. “Just having that moment of relation or connection is often helpful.”
At the end of the panel, Imparato summarized that involvement of disabled people in the workforce at every level was crucial for full participation in STEM. “If we start by listening to disabled people and [we] hired disabled people, we have this conversation at the highest levels of our sectors and institutions and we fund accessibility, we’ll have better science,” he said.
MOVING BEYOND COMPLIANCE
Logan Gin, a member of the National Academies’ Beyond Compliance: Promoting the Success of People with Disabilities in the STEM Workforce Committee and assistant director for STEM education at the Sheridan Center for Teaching and Learning at Brown University, moderated a panel on moving beyond compliance in the workforce.
How the Americans with Disabilities Act (ADA) Has Changed
Gin began the discussion by asking panelists to explain why the Americans with Disabilities Act (ADA)6 was created and how it has evolved through 2023. Jasmine Harris, professor of law at the University of Pennsylvania, said the ADA was created to deal with a lack of legal protections, or as one of the drafters of the law, Robert Burgdorf, described it, “a response to an appalling problem: widespread, systemic inhumane treatment and discrimination against people with disabilities.” The absence of legal protections and deeply entrenched social stigma equating disability with functional incapacity “resulted in the historic segregation of people with disabilities from all facets of life,” Harris added, including public
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6 42 USC 12101, available at https://uscode.house.gov/browse/prelim@title42/chapter126&edition=prelim.
education, the workforce, and in some places, the right to vote, marry, or have children.
The ADA prohibits discrimination across different areas, including public services and employment, but it is unique among other civil rights laws in that it requires proof of being protected by that law in the first place, Harris added. “To fall within the ADA’s protection, you have to prove that you meet the definition of disability within the law.” Not everyone with a disability automatically meets the definition, and as a result, that definition has been litigated over and over again, she said. “Basically, the first 18 years of the ADA was spent in court trying to … have judges interpret who’s in and who’s out in terms of disability.”
Aaron Konopasky, senior attorney-advisor at the U.S. Equal Employment Opportunity Commission (EEOC), said that over the many years of his career, he has learned that “nobody learns anything about the ADA by talking about that definition,” and he offered the historical perspective that prior to 2009, it was “relatively hard to have disability” under the ADA. What happened, Harris and Konopasky explained, was that Congress amended the law to broaden the definition of disability, making it more inclusive than what had been litigated through the U.S. courts.
“It’s a little bit difficult to overstate the degree to which it changed,” Konopasky said, likening the current understanding of disability under the law as being closer to the category of having a medical condition. “It’s true that you have to … meet some sort of threshold in terms of the kinds of symptoms … but especially if you’re an employer, it may not be worth your while to spend too much time thinking about whether or not a particular person meets the definition of disability.” If they are disclosing disability and asking for a reasonable accommodation, “most likely their condition is going to meet the definition.”
This has had the biggest effect in the mental health area, Konopasky said. The law protects against discrimination or disparate treatment because of disability. In the workplace, he said, this often is a result of negative stereotypes of disabled people, and assumptions about safety and competence when considering them for a job. “ADA says you can’t do that,” Konopasky said. “You have to look at the individual person.” There are also prohibitions against harassment and physical threats, as well as protections that limit an employer’s ability to ask for medical information, and keep confidential what they do have, he noted.
But the “heart” of the ADA is reasonable accommodations, Konopasky said. When discussing the workplace, he likes to start with a thought exer-
cise of asking people how they would react if they showed up to a new job and found their desk was 12 feet high. “You might reasonably say, Well, wait a minute.… I don’t fit into that desk … and that’s really the experience that some people with disabilities have every day.” Historically, employers have been allowed to choose employees who “fit” into a job in this way, he said. What is innovative about the ADA is that “at least in some respects, the employer is now obligated to fit the job to the person.” Working from home, a quiet office space, a braille printer are all examples of reasonable accommodations under the ADA, but they can be very individualized, he said. The goal is to work with the employee to try to figure out what would help them do the job.
Contrary to popular opinion, the ADA does have limitations, he added, including if the accommodation would present a hardship to the company, but that is a high bar to clear. “It’s not the supervisor just being stubborn, that’s not good enough. It has to be something that interferes with your ability to do business and makes accomplishing the work goals difficult or impossible.” Large academic institutions with well-funded endowments are unlikely to meet this test, he said. The ADA also does not require lowering production standards or the quality of work.
Harris agreed that individualization is important for workplaces complying with the ADA through accommodations. “A defense that sometimes comes up is, ‘We’ve never done this before,’” she said. “The fact that you didn’t do it before means that you didn’t encounter this particular individual,” and the law still requires a response.
Americans with Disabilities Act in Higher Education Employment
The ADA does not ensure that everything has been implemented perfectly, Cathie Axe, executive director of Student Disability Services at Johns Hopkins University, said. “That’s going to take work as institutions look at where our potential barriers [are] and how can we think ahead and plan for employees with disabilities.”
Higher education has changed as more students with disabilities are making it to college and beyond, Axe said, because of better support systems, and a greater understanding of the social model of disability. But COVID-19 highlighted the barriers and how university structures themselves have negatively affected people with disabilities. “For years and years within higher education we had been saying certain things weren’t possible,” Axe said. “We saw that when needed, there were all
these changes that could happen quite rapidly and quite effectively.” She hoped that part of the discussion rethinks traditional workplaces and how higher education is structured, “so that things happen more readily and are seamless for people,” instead of working tremendously hard to get accommodations.
Common Issues with Employers and Employees
Gin asked the panelists the common conflicts they saw between employees and employers. Fear of the unknown is a big issue, Harris said, and when employers are not well informed or comfortable with the accommodation process, they can become very reactive. Preplanning and understanding their role, through resources like the Job Accommodation Network,7 can help an employer be much more comfortable when a request comes in, she said. Gin commented that accommodations by design pushes against the common human resources framework of treating everyone the same way. “Making exceptions, treating people differently to get what they need, that’s an idea that people aren’t always immediately comfortable with,” she said, giving examples of large employers talking about telework as a moral failing. Harris noted that the rebuttal to the idea of “fairness” when considering accommodations is “the workplace itself ” was designed with able-bodied, neurotypical individuals in mind. “The ADA and Congress understood that the form of discrimination may look different and accounted for that,” she said.
The main mechanism for enforcing the ADA on employment and accommodations is still a lawsuit, Konopasky noted. “Obviously it’s not a first choice because it requires a lot of work and intersection with the legal system,” he said. “But people are perfectly within their rights to file charges of discrimination with the EEOC.”
Workplace rights also include a back-and-forth discussion with the employee about what is going to be effective for them, Axe said. “You don’t have to get the accommodation that you request, but it has to be something that is effective,” she said. It also encourages employers to gather more information about what is considered reasonable. “No one wants to make those decisions on their own.… Multiple perspectives will help us to land in the right place.” Axe also tells managers to consider it a process, with the ability to revisit if the initial plan is not working. “We also can admit if something
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7 For more information, see https://askjan.org/.
has had an impact that we didn’t anticipate,” she said. “I think that can help everyone to kind of relax a little bit about the process.”
Delays or additional paperwork to gain the accommodation can be just as discriminatory as an outright denial, Konopasky said. “Employers shouldn’t think they can get away with just sitting on it forever.” Paperwork demands are trickier, he noted. “Generally speaking, employers are entitled to less medical documentation than they think they are,” but basic documentation for more invisible disabilities may make sense. That being said, Konopasky added, “it’s not unheard of that the employer would use requesting medical information as a way to punish the person and to delay the whole process,” and that goes to the privacy part of the law.
What Is Next for the Americans with Disabilities Act?
Gin asked the panelists what they expected the next 30 years of the ADA to look like, especially for disability in the workplace and moving beyond compliance. Axe pointed out the need to ensure workplaces have a culture that makes an accommodation request easier and allows people to be honest that they need something without being singled out. Part of that effort is all employees’ active participation in the workplace to combat stereotypical reactions or traditional kinds of approaches. “That’s the number one thing I hear [from employees] … what they overheard in the workplace has made it very difficult for them to come forward,” she said, and delaying the request not only makes it difficult for the individual but affects the employer or school as well.
Technological changes and wider adoption of telework will have a positive effect on how the ADA works in practice, Konopasky said. “As technology continues to develop, there will be more and more solutions to particular issues that people face.” Harris added that employers must take the opportunity to use disability to rethink the workplace and be proactive instead of reactive to requests. Instead of an employer dealing with 20 individual requests for a sit/stand desk for those with carpel tunnel syndrome, they could be proactive and redesign the workplace so everyone gets a sit-stand desk.
WORKPLACE EXPERIENCES
Dave Caudel, associate director of the Frist Center for Autism and Innovation at Vanderbilt University, opened the discussion on workplace
experiences by asking panelists to describe a welcoming experience they have had at work.
Amy Bower, senior scientist at Woods Hole Oceanographic Institution, said her workplace had been very accommodating and “extremely generous in providing reasonable accommodations for my vision loss,” but she paused when considering if it was welcoming. “The almost minuscule number of people with disabilities at the institution means that I’m a superminority,” she said. “Just even the lack of community is kind of lonely, to put it frankly.” She also noted that her institution had not been “openly advertising their willingness” to provide accommodations to the entire community.
Flexibility in accommodations in her current role has been important to Meenakshi Das, a software engineer at Microsoft. As a person who has a stutter, speaking—especially for long periods—can be challenging, so she uses online chat functions as an accommodation. It is free and widely used by everyone in the company, but at other times, she does not want to use this tool. “Just because I stutter, that doesn’t mean I don’t have a voice.”
A welcoming workplace begins at the front end of the hiring process, said Susanne M. Bruyère, principal investigator and co-project director of the Employer Assistance and Resource Network (EARN).8 Her research has shown that people are far more likely to apply to a job if the company’s website and career offerings signal they want a diversity of abilities. This may include seeing people like themselves on the website, information about accommodations on career pages, and affirmative hiring programs for neurodiverse people.
“Providing accommodations is basic; that is complying with the law,” noted Anupa Iyer Geevarghese, chief of staff of the Office of Disability Employment Policy at the U.S. Department of Labor. “A welcoming workplace is taking it to the next step,” she said, adding that another way to have a welcoming workplace is creating an employee resource group for people with disabilities and then actually leveraging that group “to feed into the work that you do.” Research by the ODEP funded Job Accommodation Network has shown that a majority of accommodations cost nothing or less than $300.
As an autistic individual, Caudel says, he has had a variety of jobs that have not been particularly welcoming or accommodating, and “as a consequence, I really struggled.” His most welcoming workplace environment has been his current job, where he has worked for the last 10 years, and that has “made all the difference.” A welcoming workplace can be beneficial
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8 For more information, see https://askearn.org/.
to the institution as well: “We all have our own needs and if people can be met with those needs, you can get a lot of real quality work out of us.”
Challenges in the Workplace
Making even small changes in your institution can be exceptionally difficult if it does not become part of the wider culture, Bower said. For the past 4 years, she sat on an administrative council that was a very intensive work group with a lot of information exchange during the meetings. “I had to struggle for years to insist that they add alt text to the images in the PowerPoint presentations, and it got extremely tiresome,” she related. Her fellow council members were “all extremely well intentioned, but it did not become part of the culture” or expected meeting behavior, despite multiple attempts and even the institution’s president insisting presentations would be provided in advance. It was not really resolved, Bower said. “After 4 years I was glad to get off this council.”
Stigma can also influence the interviewing process, Das said. During interviews for an internship, she thought she answered well, but she did not get the job. “I don’t really know the real reason … but the feeling I got from the whole process was that they felt that I was too slow for them” and associated her stutter with low intelligence. Caudel agreed, saying a common shortcut is assuming intelligence based on the ability to talk. “Some very, very intelligent people struggle to string a simple sentence together,” he said. “Mena is a software engineer at Microsoft.… She has a brain that can do complex things. So, if she takes a minute to put the sentence together … it’s not a fair comparison on what her capabilities are.”
Advocating for oneself can lead to resolution of workplace problems, Caudel said, if managers and employers are willing to listen. He described a situation in which he coached a young woman with autism whose desk was next to a water cooler, making it difficult for her to focus on her job. Her initial request to move to a different desk was denied, but she was moved after she told her boss that her neurological condition meant she would do a better job if she was away from the water cooler. “If it’s something that could have a potentially positive impact on their job, as much as humanly possible we should consider it,” he said.
Geevarghese described a similar experience with changes she made to her work environment to account for people interrupting her, and her ADD (attention deficit disorder) making it hard to get back on track. It was early in her career, and she did not necessarily know what types of accom-
modation would work for her. She ended up borrowing an idea from the autistic community about using color-coded cards to identify her busyness and willingness to be interrupted. She discussed the idea with her boss, and aside from some reminders, it worked out for the most part. “The employee doesn’t have to use any magical words,” she said. “I said, I’m having a challenge doing X and that is related to my disability. Can we figure out how to make it work and what are some potential solutions?”
Bower said people without disabilities “ask for work accommodations all the time for all kinds of reasons … and yet, if one has a disability, somehow there’s this giant hesitation to do it … for fear of some kind of negative feedback or being refused an accommodation.” Recognizing that requests—and accommodations—were a part of nondisabled employees’ experiences “helped me be a little less hesitant.” Bruyère confirmed this from her own work: “What we hear often [is] that career advancement is stymied by people’s hesitation to ask for those accommodations.”
What Can Employers Do?
Employers need to publicly and openly welcome applications from people with disabilities, Bower said, but they need to indicate their willingness to go beyond compliance and interpret reasonable accommodations in the broadest possible sense. They also need to avoid asking employees to do their accessibility testing, as there are professional organizations that do so, she said. For example, she uses a screen reader, but she should not have to test out all her organization’s webpages. “I’m an oceanographer; I’m not a technology expert,” she said. “My peers aren’t being asked to do that kind of testing.” Caudel agreed, adding that organizations should not rely on employees to “pull double duty,” but they can encourage employees to reach out to suggest something if they notice something wrong or something that could be done better.
Complying with the law is step one, Geevarghese said. Employers must also include accessible technology from the start, from early stages to a full rollout, and make their workplaces mental health friendly and include accessibility in any DEI work they do. “Actions speak louder than words,” Das added. “If you are marketing that you are a very inclusive place, your actions need to show that too. For example, if you want to hire more people with disabilities, but your job site is not accessible, it’s of no use.” Employers need to make sure they invest the time in making workplaces inclusive.
CAREER ADVANCEMENT AND PROFESSIONAL DEVELOPMENT
In a separate panel, Caudel spoke with a variety of people about improving career advancement and professional development for people with disabilities. He asked panelists what programs and practices had a good approach to these areas, and what would they like to see.
Mariah Lynn Arral, NIH fellow and doctoral candidate at Carnegie Mellon University, identified mentorship programs started by disabled individuals as part of the DisabledInSTEM Twitter group as “you don’t always find a mentor in your own program who is disabled.”9 She also mentioned application assistance programs to discuss how to approach graduate school and other applications. “Both of those programs have done a fantastic job in not only facilitating keeping graduate students who are disabled in their programs, but also helping students [who are disabled] get into graduate programs.” She herself started a peer mentoring group at Carnegie Mellon.
John Tschida, executive director of the Association of University Centers on Disabilities, is a “big fan” of employee affinity groups or similar setups, especially where there is strong buy-in from organizational leadership. A study by DisabilityIN10 found that the presence of three factors in the workplace, that is, an affinity group, disabled leadership, and C-suite buy-in, “was optimal for achieving both business outcomes and outcomes for the individual with a disability as well.” A crucial part, he added, is how these affinity groups are being engaged in evaluating policies and formulating new ones. Companies must take advantage of existing disabled leaders in the organization, “both to show them opportunities for engagement and [to] help them serve as role models for success.”
Trainings for Workplace and Workforce
An estimated 20 million working-aged people are neurodivergent, said Ernie Dianastasis, CEO of The Precisionists, Inc., and about 15 million can do the types of office jobs and sustainable work that can create really successful careers. It is an untapped labor pool, he said, especially as the United States has millions of unfilled job openings. “The challenge actually becomes an incredible opportunity,” he said, but it involves getting job can-
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9 For information on DisabledInSTEM, see https://disabledinstem.wordpress.com/.
10 For more information, see https://disabilityin.org/.
didates ready for the workplace and the workplace educated on the strengths of neurodiverse employees. His organization has a training program for both the technical skills and the workplace skills for the job candidate, but also training for organizations on working with neurodiverse talent. “Employment is just one piece of the puzzle,” but a key one, Dianastasis said. Sustainable employment often leads to other forms of independent living. “We have had countless examples of people seeing their confidence level going up,” after stepping into careers, and wanting to live on their own, get drivers’ licenses, and more, he said. “Other pieces of the puzzle start to come together if the employment piece is solved.”
Caudel noted that more than 80 percent of people on the autism spectrum are unemployed or underemployed, even including people with bachelor’s and graduate degrees. Arral said educating the workforce on disability literacy is key. She has given several talks and had plenty of conversations in her home department because a lot of organizations do not know even how to talk about disability. “It’s something that is really needed across the board, because you can’t make advancements for disabled people if [nondisabled] people don’t even know who disabled people are and what rights they have,” she said. Dianastasis agreed, saying, “One of the biggest mistakes we can make is [to] assume that everybody is at the same level of awareness and knowledge.” In group settings he can be talking to people who have direct experience or they themselves are neurodiverse and people who have no knowledge or grounding.
Strengths and Confidence
Dianastasis said that employers and any program that encourages professional development must highlight the strengths of the individual. “This applies whether you’re neurodivergent or whether you’re neurotypical,” he said. “This is what the education system also needs to strive for all the time … [to] figure out the strengths of each individual,” and to figure out how to unlock that.
Arral said that this has made a difference in her career so far. She was fortunate to have a mom who did not agree with teachers who said Arral would not be able to hold down a job or live independently because she was autistic. “She had my back,” she said, adding a lot of individuals who are on the spectrum do not have parents like that. “It’s [an] important thing to think about that what support they have gotten throughout their life is also going to impact how they’re successful in their job.” She added that it needs
to be acknowledged that people who are open about their disabilities “will be judged differently, they will be evaluated differently.” “A lot of times I hear people say, ‘No, we’re not going to do that, we don’t judge people differently,’ but we absolutely do. It’s an unconscious bias we have.” Focusing on the strengths mindset takes away from the negative effects of this bias.
Tschida agreed that a strength-based framework is going to have a “direct impact” on an individual’s level of confidence. It also requires an employer to listen to the disabled employee about their strengths and understand that their institution may not have the competency in providing full development they thought they had. These strengths are different from person to person, Caudel added, and can work if teams are willing to become uncomfortable about how to best integrate the strengths of each team member. “I’m primarily a visual thinker … but it would be foolish to think that’s the only way to get this job done.”
Attending Conferences
“This is a really hard question because it really depends on the disability, it depends on the person’s needs, it depends on money,” Arral said in response to a question about how conferences—and the professional development opportunities they represent—can be better facilitated for people with disabilities. She said she enjoys in-person conferences, as long as she self-moderates, but understands that others prefer and can really benefit from virtual conferences. For her, that means how hybrid conferences are organized is crucial. “We need to be very diligent … that there is direct interaction designed for virtual attendees, so [that] they’re actually getting what they’re paying for,” she said.
Tschida pointed out that plenty of information is available for conference organizers to best design conferences for all people. “This ground has been plowed by many disability organizations before you,” he said, to ensure not just accessibility but the engagement and involvement of people with disabilities in the planning process and the programming. “Make sure that people with disabilities are seeing themselves on the dais and not just off in some disability-only group or room.” Accounting for translation services for attendees who speak languages other than English as well as plain language for those with intellectual disabilities is increasingly crucial, he added. “It needs to be intentional and that needs to happen at the very beginning, not at the end when you realize you have forgotten something or forgot to the engage a key constituency.”
