NIH all About Grants Podcast: A Focus on Researchers with Disabilities

June 12, 2024

Kosub >> As part of NIH's wider efforts to foster a strong, robust and diverse biomedical research workforce, this means considering the experiences, the personalities, the everything about our research workforce and including people with disabilities, researchers with disabilities. But what should this group consider when engaging with NIH? Are there specific programs that can help researchers with disabilities out? What should one be thinking about as it relates to reasonable accommodations and a grant award? Let's talk about all of this and more in this edition of NIH's All About Grants.

Announcer >> From the National Institutes of Health and Bethesda, Maryland. This is all about grants.

Kosub >> All right. Welcome to the show. My name is David Kosub, and I am with the NIH Office of Extramural Research. And as someone with a vision impairment and a former researcher, this is a conversation near and dear to my heart. I am glad to say that we have with us two guests, Doctor Alison Cernich. She is the deputy director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development. And we also have Doctor Theresa Cruz. She serves as the director of the NICHD's National Center for Medical Rehabilitation Research. And I'm glad to say welcome both to the show.

Cernich >> Thanks, David.

Cruz >> �Hi.

Kosub >> All right, so let's just jump right in and do some level setting. What's the why is it important to consider researchers with disabilities in biomedical research?

Cruz >> Thank you for having us. We're excited to be here. Uh, this is Theresa Cruz. Um, people with disabilities are a very diverse group, and they bring a lot of creative problem solving experience, uh, to their work. And they have many years, often of experience adapting to environments that, unfortunately, aren't always designed for their needs. And we think that type of thinking is very valuable to the problems that NIH is trying to tackle. Alison.

Cernich >> Yeah, I think the other is that we know that diverse teams are more innovative than sort of homogeneous teams, people who are all the same. Right. If we add people with disability, it really enhances the diversity of our workforce and gives us that whole other dimension and increases our creativity. Um, you know, we're tackling hard and complex problems in NIH, and we can't really afford to leave talented people out of the workforce. Um, there's value in that lived experience. And, you know, we just want to make sure that we bring in the perspective of scientists with disability, just like we bring in, uh, other groups and as we bring in other scientific perspectives.

Kosub >> It was part of bringing in those different perspectives and bringing them into the NIH community. Like, what particular challenges or barriers does a researcher with disability face or may face when when engaging with NIH, like through program staff or the grants process generally, what might they be thinking about?

Cruz >> Well, from a broader perspective, um, I think physical barriers are often the easiest to recognize. So buildings without ramps or elevators or doors that have automatic openers or lab benches that are too high or too narrowly spaced, uh, those things can all be barriers to people with mobility disability who are trying to be a part of the biomedical research enterprise. Um, not all of our electronic systems are as friendly as they can be to people with visual disabilities who use screen readers as another example. Um, but remember, you know, up to 80% of disabilities are not apparent or, um, invisible. So things like fatigue or, um, overstimulation from sensory input, uh, neurodiversity, those things might not be obvious. Uh, so when we bring someone on to a team, it's really important that we ask, you know, what does that person need to be successful, and how can we adapt the environment to work with that person so that they can be their best at work? Um, you know, the the other thing is, is attitudinal barriers. And that's that's a bigger challenge, frankly. Um, you know, are we encouraging people with disabilities and welcoming them into higher ed in Stem? You know, our colleagues at the National Science Foundation put out reports. Um, and they show, you know, up to 13% of science and engineering doctorate recipients report having a disability. But when we look at faculty and we look at the number of NIH PI's principal investigators who report having disability, those numbers are much lower, 3%, 1%. So we have this serious disconnect. And we also need to think about, you know, our behaviors as well as the physical environment.

Kosub >> So so thank you for that. But so so recognizing all those potential barriers, what are we at NIH trying to do to help address them? And how can we better partner with the community on these.

Cernich >> Yeah. Thanks, David. I think I'll take this one. The biggest thing for, for us is really thinking about how do we engage with the disability community. Um, and the disability civil rights movement has a motto, nothing about us without us. Um, and, and that's been really central to the way that I think both Theresa and I have always worked with this community. We have to start by listening to needs. Right. So I am not, as an ally going to assume that I know. Um, so part of our work right now, we have a diversity, equity, inclusion and accessibility working group at the NIH level. Um, and we have a team that is trying to tackle some of these needs, um, both internally for our scientists here at the NIH and our employees here, but also thinking really about the external community. Um, and we have a number of people with lived experience who are serving on that committee with us, and then we're going to also be going out. We also provide information about expectations for accessibility and nondiscrimination policies as part of the notice of award to institutions when you receive, um, a grant. So every, um, you know, notice of funding opportunity also includes civil rights language, including people with disabilities. So I think even at that funding basis, we are really trying to include, um, ways to ensure that people have access to the things they need, um, to make sure they can be successful in science.

Kosub >> Yeah. Thank you for for mentioning that. Yeah, the assurances are for civil rights. Assurances that institutions must have as part of an award is key. Um, speaking of those external extramural researchers, are there any particular programs that NIH may support that might help support the careers of researchers with disabilities?

Cruz >> This is Theresa. Yes. We do have a few opportunities that people should know about for graduate students. They can apply for the F31 Diversity Fellowship. And when they're putting in that application, they should include requests for additional funds for accommodations in those applications. Um, PI's who have institutional training awards and they are applying for for renewals, can also request accommodations within those t32 applications. Um, at the career development stage, our K Awards, we do allow for a reduction of effort. So if people need to take time to, um, you know, uh, disability is often called a thief of time. Um, so if they need more time, we can allow for that, um, in their reported effort. Uh, and then finally, for PI's who have a disability or become disabled during the course of their active award, we can also provide diversity supplements. Um, and these can be two project grants, program center grants. Um, and they can be, uh, requests for things like equipment and assistant to help a Pi in the lab, uh, or modifications, um, to facilitate reasonable accommodations. So we do have options. Um, and people are encouraged to talk to their program officers about how they can tap into those.

Kosub >> Yeah, I definitely want to amplify reaching out to your program staff, if you have any of those questions about reasonable accommodations, because there's some allowability of costs that could be, you know, to help you do your research. Um, so now that we've kind of focused on what, you know, how we can do it with NIH, what about, like, researchers engaging with their institutions? Um, they're obviously key parts and integral to this whole thing. Um, how do you all have any advice on how researchers with disabilities can, you know, keep these conversations going with their, um, institutions?

Cernich >> Sure. This is Alison. I think we acknowledge, you know, it is really difficult sometimes at an institution to one even report that you have a disability. Right. And I think that there is either stigma or a fear about that. And disclosure really isn't desired by everybody with a disability. Disability is something for some people that is not something they want to disclose. But I think if you want to be successful, I think with many things we have to admit when we need a resource to be in that place. Right. And so some disclosure may be necessary, and it doesn't have to be the whole, um, narrative, but it just has to be enough to help to get the resources that are needed. And then if people are having difficulty with accessibility or with harassment or discrimination, you know, I just call back. Those are research integrity issues, right? We've we've put in your notice of grant award that you have access to these rights. And so again, this is where I think reaching to NIH staff, um, to raise these issues for the appropriate channels for reporting is something that that we can be of assistance with as well.

Kosub >> Yeah, thanks for that. If folks are experiencing issues with harassment, we do have a web form that one can report these sorts of concerns to us as well. Um, so you mentioned kind of the stigma and the fear of kind of identifying oneself as having a disability. I can totally understand that and appreciate that. But like, what if like you're a lab member in the in the lab and you don't really know how to tell your boss, your PI, your principal investigator, you know how how to help them, you know, work with you in the lab. I mean, how how can both PI's and their lab mates, you know, be successful? How can they work together?

Cruz >> Right. So PI's have a position of power, right? And with power comes responsibility. I'll say. So, um, as someone famous, you know, said before, you know, I think it's really good practice to ask everybody in the lab or the work environment what they need to be successful, what do they need to be their best self at work? And this isn't a disability specific issue. Um, we think about family obligations like child or elder care. Um, we think about people who work better in the morning versus night owls. Um, after the pandemic, I think we are much more aware of flexibilities that can be offered to get the work done, uh, in a way that works best for a person's well-being. Um, and I would also point out that many accommodations are free or low cost. I think there is a, um, a misunderstanding, that it will be very costly to bring somebody with a disability into the lab, and that's just not the case. Um, commonly used software, uh, offer accessibility checks. There's no reason why we couldn't all run a check to make sure that documents or graphs that we share amongst the lab is, um, accessible. Um, and also things like providing information ahead of time or an alternative formats, you know, those are easy ways to adapt to make people feel welcome and included and contributing to our mission.

Kosub >> Yeah, definitely echo that, uh, you know, interest in making things accessible whenever working with, you know, with a researcher with disabilities, figuring out ways to make sure that everyone has equal access to that information and can learn from it. Um, it benefits us all. Uh, well, Alison and Theresa, this has been a great opportunity to to learn more about how NIH can can work and NIH can work with researchers with disabilities and vice versa. Do you have any final thoughts that you'd like to leave with the audience before we close about, um, what researchers with disabilities should know?

Cernich >> You know, I think we have so many opportunities in science. There's so many things out there that we still need to understand. Um, and we really need the most talented people. Um, who are given a great environment to work. Um, and that inclusive workforce, I think, really centrally includes people with disabilities. Um, and so I think people, you know, should feel free to reach out to program staff. Um, feel free to use the access the resources from extramural research from the Office of Extramural Research. And and really we are looking to engage more on this issue. So thanks for the opportunity, David. We appreciate it.

Cruz >> Thank you. David.

Kosub >> Well. Alison. Theresa, I truly appreciate this opportunity. This has been great to hear more about how NIH is considering researchers with disabilities in the wider biomedical research workforce. For those interested, definitely reach out to your program staff. Reach out to here at NIH, and we're here to help. This has been David Kosub with NIH's All About Grants. Thank you.