Scientists contending with disabilities are prevalent in the STEM community. For instance, of all graduates who earned doctoral degrees in science or engineering in 2019, about 9% reported having one or more disabilities. Unfortunately, these individuals do not always receive the support that they need. In an effort to promote visibility and awareness of these issues, we decided to reach out to several women scientists at the heart of the disability movement to find out their stories.

Dr. Reid Blanchett works as a postdoctoral research fellow in cancer epigenetics at the Vandel Institute in Grand Rapids, Michigan. She credits her confidence as a scientist in part to the Kalamazoo Area Mathematics and Science Center: the high school kindled her passion for science by providing her with exciting opportunities, including the chance to work at Pfizer Animal Health (now Zoetis).

Dr. Amy Bower serves as a senior scientist at Woods Hole Oceanographic Institution, a private nonprofit research and education center in Massachusetts. Her team goes to sea and deploys sensors and instruments to measure and observe the ocean currents at depth.

Steff Lebsack has become a speech-language pathologist and has launched her own private practice. She also juggles roles as a high school cross-country coach, a PhD student, and an adjunct faculty member at Baylor University and Florida Atlantic University.

 

Dr. Naheda Sahtout completed her biology BS at the University of Waterloo, a masters degree in molecular and cellular biology at the University of Guelph, and a doctorate in chemistry at the University of Saskatchewan. She currently serves as a policy analyst for Natural Resources Canada, a department of the government of Canada.

These four women have traveled different paths but share the experience of being a scientist with a disability. Bower and Sahtout have visual impairments, Lebsack experiences chronic lung disease, and Blanchett manages a psychiatric disability. To achieve excellence in their fields, they have had to overcome unique challenges. We spoke to them about their paths to success and asked them to share the lessons they have learned and their recommendations for how other women can learn to advocate for themselves.

Overcoming Self-Imposed Challenges

Speech-language pathologist Lebsack experienced chronic lung disease in early childhood and later as an adult, starting in her early 30s. “I had to do a lot of work on myself and on my identity as someone with a disability before I could even begin to advocate for myself,” she acknowledged, explaining that counseling has helped with this work. Now, she encourages others and emphasizes the broader benefits of speaking up for yourself. Not only are you stating your needs to function in the job that they hired you for; you are also blazing a trail for others to do the same thing,” she noted.

Lebsack underscored the work that she has had to do to leverage strength from her unique identity: “I had to learn to desensitize myself to such unhelpful thoughts as ‘I’m a burden…They could just hire someone who could do the job without accommodations.’ I had to tell myself, ‘No. They hired me for a reason, because of my skills. I have value to bring to this place, and they can accommodate my needs.’ That’s a fact. Telling yourself that is quite the process.”

Oceanographer Bower observed that she tried for too long to keep her vision disability hidden. She said, “[Acknowledging a disability] is a very hard personal struggle for many people. Stigma keeps people like me from disclosing because we are afraid that we will be unfairly judged and maybe even rejected for a position or for a particular project or a task, at every level. When I hear some of the horror stories about how disclosure has been received, I understand completely why people don’t want to, but on the other hand, if you want accommodations, and if they would help you be successful, then you have to. In the end, I found that when I finally got more open, it was definitely the right way to go.”

Cancer researcher Blanchett commented on her own experience living and working with a disability. She asserted, “When you have a disability, some days you can’t be at a hundred percent. Some days, you just have to kind of accept it and tell yourself, ‘I can’t be at a hundred percent, and that is not a flaw in me. That is not my fault, that is not something I’m doing, and it doesn’t make me a bad person.’ So, just understanding that even though we, and the culture, suggest that “There are no limitations,’ you do have to accept your limitations sometimes. But you also need to recognize that they don’t say anything about you as a person, that tomorrow’s a new day, and that you can still chase your dreams. You just have to be a little more cognizant of what’s happening.”

Finding and Growing Community

When she was first diagnosed with chronic lung disease as a young adult, Lebsack faced challenges in finding the right support groups. As a speech professional, she started to become closely involved with support groups for people with stutters and found, to her surprise, that they matched up with her personal needs, despite the fact that she does not stutter. She said, “[These groups] taught me more about living with my lung disease than a lung disease support group ever taught me. People who stutter go through something chronically. And it’s not to say my lung disease is just like stuttering, but there are some parallels in the lived experience when you get to talking with someone. They taught me how to…cope and to live and to be a mom, because my kids were tiny, and to be a wife, because we were still young in our marriage.”

Bower was a couple years into a PhD program at the University of Rhode Island’s Graduate School of Oceanography when she learned that she has retinitis pigmentosa, a degenerative retinal disease. She considers herself fortunate to have a supportive doctor, family, and colleagues. However, she says, “The lack of role models—others [who face disabilities], a community—has been hugely difficult.” At the time of her diagnosis, she didn’t know any blind scientists. In the time since, she has connected with professional scientists with disabilities, although building an extensive community of such STEM professionals has been slow over the past 30 years.

She identified two consequences that result from the absence of role models. One is self-doubt: “You internalize ableism. Your brain keeps on saying, ‘Well, geez, maybe this isn’t possible. Nobody else is doing it.’” A second consequence: because there’s no critical mass of people pushing to make accessibility the cultural norm, the burden of fighting for access continually falls on individual disabled scientists.

To address the need to build a supportive community and to improve the situation for those who follow her professional path, Bower has become an active advocate for visually impaired individuals in the sciences. She speaks at Perkins School for the Blind in Watertown, Massachusetts, the nation’s oldest school for students with vision impairments, and she hosts an annual field trip for Perkins students. She writes articles on accessibility topics and serves on panels that address relevant topics, for example, participating in the National Academy of Sciences series “Disrupting Ableism and Advancing STEM: A National Leadership Summit.”

As Bower has gained national attention, she has received requests from other researchers seeking advice on how to develop a career in science while living with a disability. She noted, “I realize now that I have a lot of experience to share. I have a lot of knowledge about a lot of resources.” She added, laughing, “And I have a lot of experience coexisting with self-doubt. So I try to pass that on and to help them feel like they belong.”

Policy analyst Sahtout is also active in advocacy for the visually impaired in STEM. She currently serves as the External Relations Officer of the Science in Braille campaign, which unites professionals in STEAM fields who have visual impairments and aims to promote accessible STEAM literacy and education for all. She is also the author of “How Science Should Support Researchers with Visual Impairments,” an advocacy article that she published in Nature in 2020.

Blanchett and Sahtout both spoke about their struggles in finding good mentors—another issue that would improve with more extensive disability communities. Sahtout said, “Mentorship is especially important, finding someone who believes in you, who’s willing to support you in your journey and to connect you with individuals who can help you in your career, help you progress forward in the vision that you have for yourself.”

Support from Leaders and Colleagues

Blanchett, Lebsack, and Sahtout all emphasized the importance of having flexible working conditions. For Lebsack, telepractice has allowed her to continue working as a speech pathologist when the physical demands of working in person have been too taxing for her. For Blanchett, a flexible schedule has meant that she can take breaks or go to appointments as needed during “regular” working hours, and then get work done outside those hours. During her PhD, Sahtout benefited from having a supervisor who allowed her to work collaboratively with a colleague: her colleague performed aspects of the project that required work with a microscope, while Sahtout did everything else.

Bower said that organizations can help potential employees by stating in a welcoming, proactive way—beyond the standard anti-discrimination language that is often written on job advertisements—that they are willing to make reasonable accommodations for people with disabilities. She gave an example: “Woods Hole Oceanographic Institution welcomes applications from people with disabilities and ensures reasonable accommodations for their needs.” Such statements for underrepresented groups get the conversation started, so that individuals with disabilities do not bear as much of a burden in broaching discussions about accommodations.

Adherence to universal design principles also helps employees who grapple with disability challenges in the workplace. One example: if colleagues automatically put alt texts on all images, their coworkers with visual impairments are relieved of the burden of needing to repeatedly ask for this accommodation. Employers can also choose to hire outside agencies to serve as an accessibility testers, rather than relying on their disabled employees to perform this task, so that the employees have more time to focus on their jobs.

All four women stressed the importance of giving people with disabilities the right to make their own decisions about their abilities. On entering her PhD program, Lebsack’s chair told her, “It’s not our job to tell you what you can and can’t do”: the autonomy was hers.

Reducing Barriers

Inclusive practices have made it possible for these scientists to contribute as STEM professionals. Among other benefits, these supportive environments have improved their scientific workplaces and broader communities by encouraging mutual support and collaboration among colleagues, as opposed to forcing them to work in isolated silos.

The experiences of Blanchett, Bower, Lebsack, and Sahtout illuminate the kinds of actions that reduce barriers to STEM workforce participation for individuals with disabilities. Milestones on their paths to professional success have included building a sense of identity as a capable professional with a disability; finding and growing a community of professionals facing similar challenges; and engaging support from employer organizations, leaders, and colleagues.

Bower said, “If you’re not disabled yourself, be an ally, and make sure that your employer, your HR office, and your leadership team are cognizant of the contributions that people with disabilities can make in science. And make sure that your administration is ready and willing and encouraging about whatever support is needed for employees with disabilities.”

Lebsack noted, “There are still instances of workplace discrimination. So, utilizing resources within your state, if you see a discrepancy or a disparity affecting a colleague who’s disabled, don’t be afraid to name it and to advocate. Be encouraging, be a safe listener for friends with a disability, if they ever need you to be, listen and join the movement for advocacy.”

Blanchett also spoke about the importance of encouragement, and she offered advice about bias awareness: “You don’t know what someone’s going through if they haven’t disclosed to you. And if someone has disclosed, and you do know what they’re struggling with, be aware of biases that you may have, unconscious or conscious, and work hard to try and change those…[That attitude] will change how everyone looks at us and will probably raise the ceiling a little bit for us.”

In addition, Sahtout talked about the opportunities that emerge from continuing to build supportive communities. “I’m sure some of your readers have gone through great career paths and have moved forward. Just being able to engage with networks of individuals is, is a strong benefit. Networking helps women who are just navigating their way into the workforce, and it especially helps individuals who have disabilities and who are struggling to see where they can move forward.”

Leaders must take responsibility for ensuring that the members of their communities feel included and receive reasonable accommodations. Embracing universal design, offering flexible work arrangements, and encouraging mentorship and support groups are just some of the ways that they can ensure that they provide an inclusive and productive environment for the scientists with disabilities whom they hire. Developing disability-inclusive workplaces and workforces isn’t a question of charity; whole organizations and societies benefit when we work to tap into the strengths of each individual.

Read related AWIS articles on scientists with disabilities.

• AWIS article: Alix Generous

• AWIS article: Kimberly Fiock

• AWIS article: Steff Lebsack

• AWIS Webinar: “Hidden Strengths: Disabilities Make Better Scientists”

 

Georgina To’a Salazar, PhD, works to create innovative solutions in science communication, research, and policy. With a BS in chemical engineering from Stanford University and a PhD in biomedical engineering from the University of California, Irvine, Dr. Salazar has fulfilled her dream of exploring the world, having taken research positions in Singapore and Japan before returning to the United States to focus on science communication. She is now at Takara Bio USA, Inc.

 

This article was originally published in AWIS Magazine. Join AWIS to access the full issue of AWIS Magazine and more member benefits.