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Mona Minkara, assistant professor at Northeastern University and visually impaired, examines a molecular model.

© NORTHEASTERN UNIVERSITY 2019

Inclusivity for all: How to make your research group accessible

This Advertising Feature has been commissioned, edited, and produced by the Science/AAAS Custom Publishing Office

Creating an inclusive culture in your research group requires installing mechanisms for your whole team to be successful. And when it comes to accessibility, by ensuring everyone has what they need to be their most creative and productive, you ensure a win for science AND your scientific workforce.

Mona Minkara, an assistant professor at Northeastern University, Boston, Massachusetts, is a bioengineer, a world traveler and adventurer, writer, and speaker. She also happens to be blind. Her disability provides what she refers to as her “unseen advantage” in science.

“I cannot see the data, so I have had to come up with other ways to conduct research,” Minkara says. As a graduate student, she ran a molecular dynamics simulation to observe and analyze the movement of a protein over 500 nanoseconds. The first step in this process is typically to watch a video of the protein’s actions, “but I couldn’t do it. Someone tried to explain it to me, but it meant nothing, and I didn’t know what to ask,” she recalls. But Minkara wasn’t deterred. She devised a way to plot the data, so she could interpret the protein’s movement mathematically, as opposed to visually. This approach turned out to be extremely meaningful to her as a scientist and to the science she was pursuing: “I observed patterns in the data that were missed by sighted people who were just looking at the trajectory.”

As Minkara’s example demonstrates, it is critical for science to collect and examine data in numerous ways and to adopt multiple perspectives when endeavoring to solve a problem. To produce the best science, to tackle the toughest problems, and to create and innovate interventions that advance our understanding of the universe, everyone’s voice, view, and brain needs to be at the table. Institutions, companies, and governments—as well as principal investigators (PIs)–need to ensure that everyone can be successful in science.

Indeed, accessibility should be a part of your lab or group’s core values and actions. “Accessibility is not a one-off,” says Sarah Lewthwaite, United Kingdom Research and Innovation Future Leaders Fellow, Centre for Research in Inclusion, at the University of Southampton, UK. “It should be a thread that will run through all your research planning.” The stakes couldn’t be higher, she notes, given the data: According to the UK’s Office for National Statistics, 19% of working-age adults in the UK have a disability (1). A recent Harvard Business Review article states that in the United States, “30% of the professional workforce fits the current federal definition of having a disability ... and only 39% of employees with disabilities have disclosed to their manager. Even fewer have disclosed to their teams (24%) and [human resources] (21%)” (2).

100% perfect accessibility is extraordinarily difficult to achieve.

Jesse Shanahan, freelance accessibility consultant

Asking the right questions

Inclusivity as it relates to accessibility starts with adopting certain tenets. “100% perfect accessibility is extraordinarily difficult to achieve,” says Jesse Shanahan, an astronomer, data scientist, and freelance accessibility consultant, with clients ranging from individual faculty to university departments, associations, and conferences. “We can’t conceive of every single disability or need someone has, so one of the best approaches to take with that in mind is to share as much information with your lab employees as possible,” she adds. For example, you can offer information about the location of accessible entrances and bathrooms and ensure that food is labeled to correspond with common allergies. If you are conducting a social event offsite, such as at a restaurant, you can call ahead to make sure it has accessible entrances, menus in braille or large-print, and quieter tables—and inform your staff that you have already researched this. You can also write your research group’s manual to include resources on campus, such as the disability resource center.

Jesse Shanahan

PHOTO: TIM COBURN

Furthermore, when crafting a lab policy towards accessibility for all, take a multi-level approach, advises Shanahan. Your priority should be to remove as many barriers to success as possible, which could include something as strategic as policy changes—such as enacting and enforcing anti-harassment policies—or something as simple as supporting your team to have time off for doctor appointments or a dedicated quiet space. According to Shanahan, accessibility is a human right under the UN Declaration of Human Rights, and in the United States, it is a legal requirement. That said, the ability to ask for accommodation is often a privilege. She suggests including the following wording in a lab manual: “I understand that getting a diagnosis or access to accomodation is a privilege, and if this is something you are having challenges with, please come talk to me. We can potentially work out a way for our lab to be accomodating.”

One of Shanahan’s most meaningful professional experiences occurred when she was hired as a data scientist at consulting firm Booz Allen Hamilton. Her supervisor didn’t request her to disclose her disability; rather, he inquired “What do you need to do your best work?” This question showed that the organization wanted to help her be her most successful, and shifted the burden of requesting accommodations from employee to employer, thereby empowering the employee. Shanahan was “taken aback” when this was asked of her, because it had never happened before. But “it instantaneously made me feel comfortable asking for things.” She urges researchers to utilize this language as the framework for their inclusivity practices. “This is an incredible move that a PI or advisor can make in their lab,” she says.

Providing a nurturing culture

Ultimately, individual actions that are taken in a lab, while critical, are not going to lead to a more inclusive community if there is no foundational culture that nurtures that inclusivity. “It is a lot easier to put a ramp in front of a building than to get people to change the culture of a workplace. Yet it is the culture, not the [unbuilt] ramp, that will drive people away,” says Shanahan. Most importantly, and in service to the culture, she says, make all of these opportunities available to everyone, even for people who don’t have an official accommodation. “Whether it’s a lab or a fancy tech company, people need to be empowered to make decisions that support their health and work–life balance, and this could include offers of telecommuting and flexible work schedules,” she says.

Another crucial element of the workplace culture is that of flexibility. “Yes, experiments can be rigid processes, but when creating an environment that is more inclusive, it’s not the ‘what’ that should be different, it’s the ‘how’,” says Meg O’Connell, CEO and founder of Global Disability Inclusion, a consulting firm that helps organizations understand how to be disability inclusive, based in St. Augustine, Florida. “How someone gets there and does the experiment should be built on flexibility. ... The most important aspect is how to accommodate everyone who comes into your classroom or lab, so they can get the most out of their experience in the learning environment.” This could involve team-members performing the experiment with someone who needs accommodation, and confirming that there is space for people who use mobility aids to maneuver throughout the lab.

“People might not believe they have a disability, but they do have a need,” says Shanahan. Respecting “that needs are fluid and change ... is a way to provide those needs without someone identifying themselves as disabled.” For example, when Shanahan was in graduate school, her grandfather passed away. She notes that while this wasn’t a disability, it’s the kind of situation that has distinct parallels with the idea of creating an inclusive atmosphere for people with disabilities. Because she was in a research group that supported success of the team in all ways, she was able to take a month off from work to grieve. “Having that paradigm shift respects that these people coming into your labs are not robots or automatons. We have life events, families, and illnesses.  A flexible, accessible work environment can shift to accommodate people in all phases of their life.”

Recognizing that disability is a different ability

Since Minkara began her faculty job at Northeastern in August 2019, she has been mindful of building a culture that allows everyone to be successful—in any scholarly endeavor, whether it involves research, management, team building, or communication. For example, when her protégés are going to give a talk, she requires them to provide their slides to her in advance. “When giving a presentation they must be very verbally explicit and describe everything,” she explains. “I want to make sure I understand what they are saying—but this [also] helps them be better presenters and communicators.” This task extends beyond just improving one’s ability to efficiently articulate ideas. “It’s a skill,” Minkara says. “We are propagating a change in the field—they are learning how to give a presentation that is inherently more inclusive.”

Amy-Charlotte Devitz, a Master’s student in the University of Michigan Department of Ecology and Evolutionary Biology, Ann Arbor, has learned to see the advantages in her disability, which requires the use of a wheelchair. Her blog, “The Bendy Biologist,” profiles all of her research in animal behavior in urban ecosystems, and has covered a broad range of topics at the intersection of disability, science, chronic illness, and academia, such as accessibility tips for those planning scientific conferences and how to approach writing an accessibility statement for a course syllabus. When she started using a wheelchair six years ago due to a previously undiagnosed genetic connective tissue disorder, she was told that science would not be for her. “It’s become a personal mission, especially for young and upcoming scientists, to make them realize that disability doesn’t have to be a barrier in a STEM field, and in a lot of ways, it can be really beneficial,” she says. “You have to problem solve and adapt and figure out new ways to do things. The world is inherently inaccessible, so adapting to the challenges this presents is a skill you need in science—because nothing goes according to plan. In research, this skill translates well.”

Amy-Charlotte Devitz, a Master's student at the University of Michigan, Ann Arbor, conducts field work and views her disability as a superpower.

ALICIA DEVITZ

In fact, Devitz views her disability as a “superpower” that has made her a stronger scientist. “Experiencing the world through the eyes of someone with a disability, you are forced to look at things in [greater] detail and with different perspectives that an able-bodied person wouldn’t see,” she says. “[My disability] has sharpened my ability to pick out these finer details, and when issues arise in doing fieldwork, to work around challenges with greater ease than when I first started.” Her decision to pursue research in urban environments is a direct result of her mobility concerns. “I don’t think I would have ever discovered my passion for mixing animal behavior and urban ecology had I not been forced to question what kinds of field work would be compatible with my wheelchair,” she explains.

For PIs who have not provided accommodations before, launching a research group with inclusive accessibility in mind is new territory. “Be open to those conversations,” advises O’Connell. “Get comfortable with that uncomfortable feeling that you’re not an expert and that you have to find something you may not be familiar with to make this work for the student.”

She adds, “It is so important to ask the person with the disability what works best for them and not make assumptions. They have encountered things. They know what the workarounds are.” And always consider the guiding principle in the disability community, “nothing about us, without us,” says O’Connell. “This means you should not make decisions for people with disabilities without including them in the process.  No one should assume what accommodations will work for a person with a disability without asking them first what would be most useful.”

Inclusive accessibility is about giving everyone not just a voice in science, but the tools and methods to be successful in using that voice. “Make sure you don’t have a very narrow concept of what success looks like,” says Shanahan. “Some students might take longer or need a break, and this doesn’t mean they are not successful. Support them and reassure them that they can be successful.” Adds Minkara, “We get so caught up in the whole competition and ambition, and might think of someone who is different as slowing us down ... This is such a negative value that is hindering us in all areas of science. My advice is to work with students of all abilities because it will pay off on the end, even if it takes a little more time.”

References

1. Office for National Statistics, “Measuring disability: comparing approaches,” August 6, 2019, available at www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disabili..."www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disabili...
approaches/2019-08-06#disability-prevalence-by-age.

2. P. Jain-Link, J. T. Kennedy, “Why People Hide their Disabilities at Work,” Harv. Bus. Rev., June 3, 2019, available at https://hbr.org/2019/06/why-people-hide-their-disabilities-at-work" hbr.org/2019/06/why-people-hide-their-disabilities-at-work.

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