Recommendations for a new subgroup of the National Institute for Health and other human-health research to investigate the nature and behavior of living systems
Another recommendation calls for the NIH to establish an office of disability research, similar to existing ones for women’s health, people from sexual and gender minorities, and tribal health. The office would promote the representation of researchers with disabilities at all career levels, and take steps to improve the inclusion of disabled people in research projects. It should also begin gathering information on disability as part of routine demographic data on the scientific workforce and research participants.
The term disabled encompasses people who experience impaired vision, mobility or hearing, have a psychological or mental illness or chronic condition, are neurodiverse or have learning disabilities. Disabled people represent more than 27% of the US adult population — making them the single largest minority group in the country. Only a small number of researchers who receive funding from theNIH report that they have a disability.
The NIH Advisory Committee to the Director Working Group on Diversity, set up 10 years ago in response to an NIH report about diversity in the biomedical-research workforce, endorsed the subgroup’s recommendations after the publication of the 66-page report last month. Suggestions include an alternative mission statement: “To seek fundamental knowledge about the nature and behaviour of living systems and the application of that knowledge to enhance health, lengthen life and reduce illness.”
The subgroup has three co-chairs, including Lisa Iezzoni, a health-service researcher at Harvard Medical School in Boston, Massachusetts and Bonnielin Swenor, director of the JohnsHopkins University Disability Health Research Center in Baltimore, Maryland.
The mission statement of the National Institute for Health says they want to seek knowledge about the nature and behavior of living systems to improve health, shorten life and reduce illness and disability. Eliminating people like Bonnielin and me is what the reference means, says Iezzoni. Iezzoni and Swenor have mobility constraints.
Exploring the complexities of mental-health care: Talking freely about her own experiences in her postdoctoral role as a PI
Swenor says that they are asking for data and public sharing, so that the community and policymakers can understand what happened and whether it worked or not.
Like Le, Rohde is fairly open with his students and colleagues, in part to make them aware of his work schedule and also because trading coping strategies can broaden the collective toolkit for addressing mental-health concerns, regardless of whether the other person has a diagnosis. The stigma that can prevent scientists from reaching their full potential is made easier by group leaders who speak freely about their mental-health struggles.
For newly hired faculty members, their first day marks the culmination of years of hard work — an exit from the volatile postdoctoral job pool and a sense of having made it as a career scientist. Yet the reality can feel alien compared with their experiences as a PhD student or postdoc.
“It was the hardest transition for me by far,” Le says of the shift from postdoc to faculty member. Although she wasn’t the only new person in her department, an obvious change was that she suddenly lacked a group of peers who were like her in their career stage. “The moment that you step into this role as a PI, that community is somewhat lost. You definitely have your colleagues, but they’re not all at the same stage of their careers as you, and might not be able to understand what you’re going through or give you advice.”
Returning from maternity leave in 2018, she felt isolated and was reluctant to reach out to colleagues for support with her feelings of inadequacy. “I didn’t want to have those coffee-room conversations; I didn’t want to speak about anything, because I was so scared that somebody was going to ‘find me out’.”
She says that it took an older colleague to pull her aside and express concern over some things that she had heard, and to realize how low she was feeling. After the colleague shared some of her own experiences, she encouraged Paxton to begin postnatal therapy. It helped to have honest and open discussions with people who were slightly further along in their careers who could say that it was normal and that they were doing a good job.
Researchers can protect their well-being and that of colleagues now that institutions are addressing systemic mental-health challenges.
• Have resources to hand. Whereas faculty members shouldn’t be expected to be mental-health experts, they should be able to get themselves and others the right help when needed. Be familiar with the resources you can get in your community. If you or someone you know is contemplating suicide, please reach out. You can call the suicide-prevention line atopencounseling.com.
You should make connections in moderation. Although excessive use of social media can lead to poor mental health, it is possible to cultivate a supportive digital community. Try searching for the hashtag #NewPI, joining a channel on the messaging app Slack for new hires, or reading about other academics’ mental-health journeys.
Speak up if you have something to say. Normalizing the fact that everyone struggles goes a long way towards removing the stigma around mental health, says Peter Rohde, a quantum-computer scientist at the University of Technology Sydney in Australia. Open about your own journey, if you feel comfortable doing so. Rohde, who has bipolar disorder, tells his students and colleagues when he’s struggling, so that everyone can adjust their expectations.
Santa Ono, a survivor of suicide who talks openly about his struggles with depression, is the president of the University of Michigan. A university spokesman says that after Ono’s appointment, the university launched a well-being collective that includes an advisory council and steering committee to hold the university accountable.
The courses on how to recognize and respond to someone in distress were piloted by Parikh and his colleagues in the early part of the 20th century. The content was developed in partnership with a committee of staff and students to address the unique needs of their campus, and acknowledges the difficulties of reaching out to someone who is struggling, Parikh says. The course, for example, might include language for how to approach a colleague who came to a meeting while drunk. He says they see distress in colleagues all the time. If somebody is bleeding, we know how to apply pressure to the wound. Have you learned the basics of mental health?
Lashuel is also working with his university to improve mental-health resources on campus, and says that it has been extremely supportive of him speaking out. A university has a high degree of community-mindedness. The community as a whole will be affected if one part of the community is not doing well, according to the associate vice-president for student affairs and outreach. “It is essential to strive to improve the well-being of all members of the community.” Lashuel and Bellwald worked together to conduct a mental-health and well-being survey last November as part of a mental-health week. The survey results, to be published this summer, will inform a campus mental-health strategy for both students and staff. “Once you have the numbers, nobody can turn their face away from the magnitude of the problem,” Lashuel says.
When thinking about people who are disabled, they often think of physical circumstances like a wheelchair or a blind person. Keisha Hardeman, a postdoctoral researcher at the University of Texas (UT) Southwestern Medical Center in Dallas, speaks about her hidden disabilities: depression and anxiety. She shares how these mental-health challenges have shaped her journey as a scientist, as well as the importance of seeking counselling and how she has learnt to manage.
I saw some changes in high school. The valedictorian of the class, but stopped doing academic decathlon, dropped out of other activites after graduation. When I went to Texas A&M University in College Station, it got worse and worse. I went to a campus counselling centre for the first time in 2005. I needed to talk to someone.
I was barely able to function when I went for help. I would do basic stuff, like clean out my mail, but other than that I would stay up all day and sleep. I went from a top student to barely passing my classes after getting a full scholarship.
When I was 21 or 22 I was diagnosed with depression and anxiety. I’ve seen psychiatrists, psychologists and therapists for nearly 18 years. I have done both group and individual counseling. I have been off and on medications. This is sort of an invisible disability.
Not at first. One friend responded, “But what can you be depressed about?” Many of my friends and associates did not understand who I was or how I felt. I feel that professors don’t take time to get to know a student on a more personal level when it’s a younger researcher of a different cultural background. They just don’t care at all.
Black, brown, and all that: When I was born, I was a student at the university where my father died of heart failure and COPD
There were 200 people in the class I would be taking at Texas A&M. We only have two of us that are black. We’d sit next to each other. In my circles at Vanderbilt University in Nashville, Tennessee, where I did my PhD, I saw more Black and brown people. But we’d still have obstacles.
My father died of heart failure and COPD within the first year of my studies at Vanderbilt. I tried my best to fit in, but it was hard to get along with people from low-income families who were part of my family to go to university.
The group that I was in with three other students was working on a project together. I offered to make alterations before we submitted it. One student fought me over the edits I sent them. Eventually, that student said, “Didn’t you have a death in your family — why don’t you just sit this one out?” That effectively shut me out of the project. I felt like I was being disrespected in my grief.
A Conversation with Women at Lean In: An Empirical Picture of Adolescents, Therapists, and Physicists
I’ve seen therapists, and I have attended group sessions with some graduate students. I joined Lean In, a women’s support group, because it has a chapter for UT Southwestern postdocs. I like it. When you meet other women, and you start hearing their experiences and what they’re going through, you realize you’re not alone.
Even though you are a black person, you can feel embarrassed about getting help. But that’s not true. A good, smart doctor told me that going to counseling is similar to taking daily pills for high blood pressure. You’re taking care of yourself.
They can take break, listen to music, and read. I walk in the afternoon to buy tea. I read ‘fun’ articles about scientific topics I’m not working on. I take each week as it comes. I also take days off to rest at home and go to my medical appointments.
The Stanley-Brown Safety Plan: A Social Network for Black Scholars and oSTEM in the Twin Cities, and a Campaign to Support Mental Health
I always tell people that they should try to talk to someone. They could have a talk with the dean of graduate studies. If their struggles are related to a marginalized identity, they could find a support group — for example, a local chapter of the Society for Advancement of Chicanos/Hispanics and Native Americans in Science (SACNAS) or of oSTEM, an association for LGBTQ+ people in the science, technology, engineering and maths (STEM) community. You’ll be meeting some of the top people who you could get advice from. The worst thing is being closed off from the rest of the world.
In the past, I have thought of suicide and taken myself to a counselling centre. I am okay with going to those places, even with going to emergency hospital care. One of my therapists introduced me to the Stanley–Brown Safety Plan, which provides coping strategies and resources for people who have contemplated suicide. You can find it at suicide safety plan.com/forms.
The group started after the death in 2020 of George Floyd, the Black man who was murdered by a police officer in Minneapolis, Minnesota. It now has nearly 500 members. I’m one of the board members. We are very community-centered. Our accomplishments are highlighted a lot on the social networking site.
We also do outreach. As chair of the member-relations committee, I helped to survey our members, asking what types of group they want to be in, what grants they’ve got and what they need support with. About 16% of respondents, like me, reported that they are disabled or have a significant burden that affects their work, including depression and anxiety.
In September of this year, we started a monthly Research and Social Seminar, featuring two hours of seminars with one hour of talks and a further one hour of socializing. We plan to launch more initiatives to support Black scholars and address challenges that impact mental health.