“The radical idea is that someone with a disability can be an exceptional academic”
Dr Bonnielin Swenor on the challenges facing researchers with disabilities
Dr Bonnielin Swenor is an epidemiologist at Johns Hopkins University. She also has a visual impairment.
Last year, she and her colleagues published a study looking at applications for funding from the National Institutes of Health. They found that researchers with a disability have a lower success rate than those without a disability and that the number of applications from researchers with a disability is steadily falling even as applications overall are rising.
In November, I interviewed Dr Swenor for a Nature Index article on the challenges facing researchers with disabilities.
In our conversation, we talked about how the culture of academia affects those with a disability, the ‘chicken and egg’ problem of there being too few academics with a disability for it to be raised as an issue, and the need for better data as a first step towards addressing this problem. We also talked about the importance of diversifying science so that it better reflects society and ensures that the right questions are being asked.
Below is the transcript of the interview, lightly edited for length and clarity (in truth most of the edits are to my rambling questions rather than Dr Swenor’s answers).
JB: Your recent research looks at the challenges facing academics who have a disability. How was this informed by your own experiences of disability?
BS: You’re exactly correct. The research is personal. I have vision disability. I’m visually impaired. I’ve been losing my vision for over 15 years. And it’s tough being a researcher.
I started to lose my vision when I was applying to graduate school and it obviously changed my whole focus and career. It took me a long time to get to the place where I thought I could go to grad school.
But I realised when I transitioned from student to faculty that the barriers and the challenges were much different as an academic than as a student. And no one prepares you for that. I had no mentors with disabilities, no mentors who are visually impaired. So, to be fair, no one knew how to prepare.
Even in my first year after joining the faculty, it became clear that if I was going to make it, I had to do something. I had to break these barriers down.
I quickly realised this wasn’t about my institution. This was about the whole system of science and research, and it definitely felt daunting in the beginning. But again I realised if this is what I wanted to do with my life, I have to work to change it.
So I started to think about how to make that change. And I looked to what other groups had done — women, racial minorities, other underrepresented groups — and tried to follow their lead.
JB: Last year, you published a study looking at how researchers with disabilities fared when applying for grant funding. Why did you choose to look at this issue in particular?
BS: Grant funding is a huge metric of success. I had my own challenges with the process of writing grants. For someone who’s visually impaired, you know, it’s challenging. And no one thinks about it. No one acknowledges that.
Certainly there are accommodations but accommodations don’t address the machine, the system that is academic trajectory and career progression. And so few people seem to really understand it, that those inequities and those gaps exist. And that’s why we have so few researchers with disabilities.
As an epidemiologist and a person who knows the power of data, I knew I couldn’t just write commentaries and personal perspectives. I needed data. So, I submitted this Freedom of Information Act request to get the data to see how many investigators reported having a disability and what was our grant success rate.
The data was worse than I had imagined. The percentage of applicants and awardees between 2008 and 2018 declined from 1.9 to 1.2%. Very low and getting worse.
JB: I was unsure how to interpret that. Is it that there are fewer researchers with disabilities submitting grants? Or is it perhaps that everyone is expected to submit more proposals, but if you’ve got a disability there’s a ceiling on the amount you can physically do? Is there any way that you can tease those apart?
BS: I can’t necessarily tease that out from this data set. We know that the total number of grants being submitted increased over this decade and that relatively fewer grants with principle investigators with disabilities were submitted. So the question that you asked, then is why? Why is that? We cannot determine that from this data.
Accommodations don’t address the machine, the system that is academic trajectory and career progression.
I will say there’s been some misinterpretation of this paper that I wish I could have foreseen to head it off a little bit. This paper does not mean that there is discrimination happening at Study Section [where grants are reviewed by experts in the field]. People’s disability status is not disclosed.
That was not at all what we concluded, nor can we conclude, nor do I think what happens. It is in fact what you’re talking about, that there’s systemic barriers and challenges to being an academic that are not addressed that disadvantage us.
Equality doesn’t mean equity. They’re different. Let me put it that way, we need equity. We may need something different to have the same opportunity.
You know there’s well entrenched views of what it takes to be a full professor. We’re starting to unpack and recognise that the reason gaps in achieving that status exist for many groups — not just disability. There’s less opportunity, there’s less time. There’s bias in all of these things and they stack up. And the question is now how are we going to address that?
Certainly the NIH can and is working to do better in this space, but that’s never going to be enough. The system has to change. Individual institutions have to change the way we think about disabilities. That at its core is what has to change.
Equality doesn’t mean equity. We may need something different to have the same opportunity.
And that’s hard, because what we’re asking for — the radical idea here that has yet to catch on completely globally — is that someone with a disability can be an exceptional academic. Someone with a profound disability can be a top academic researcher.
It’s a little bit of a chicken and egg thing here. Having more people with disabilities in science and medicine is the catalyst for changing societal views as to how we learn and teach and study people with disabilities. And there’s social currency and traction that extends from that into broader society.
It’s shocking to me that it still is a radical idea. You know I’ve got two little kids. And when you take time off to have babies you can add that to your tenure clock or, you know, time off from a grant. There’s precedent there. And it’s not so much of a stretch in certain thought processes to extend that to disability.
JB: That gets to one of my other questions which was why should people who don’t have a disability care about this question?
BS: That’s a great question. Because it’s preaching to the choir a little bit when I talk to other academics with disabilities.
But it’s really about traction to change viewpoints of people without disabilities in these settings. And so you’re exactly right. It’s the equity. It’s the social justice. That is not always compelling to everybody. I recognize that. At its core, that’s what moves me.
But we do leave something on the table in innovation when we don’t include everybody. Not just disability. But disability is part of that framework of diversity. There’s mounting evidence that diversity and inclusion matter, makes us better, makes us more innovative. It catalyzes research. It gets done at a faster pace.
We do leave something on the table in innovation when we don’t include everybody.
I study vision impairment, as part of my work. I have a vision impairment. I just understand data in a different way. I don’t struggle for research questions because my life is a walking research question.
When I interact with participants in my study or when people call me, we already understand each other.
It’s the language you use. It’s the way you include people. It’s how you view and frame hypotheses. It all matters. And I just don’t think we’re going to have an opportunity to have the kind of impact we could until we include people with disabilities.
I do things differently. My brain thinks about things differently because of who I am — all of who I am. And, you know, I think that’s a lot of opportunity to address research questions.
JB: One of the things I realized reading your paper is there’s very little empirical research on disability in science and academia. There are lots of commentaries but not much in the way of hard data. Why do you think that is? Is it just because there isn’t an interest? Or are there also particular challenges in researching these kinds of questions?
BS: So I think there’s a couple dimensions to that. The first is how do you generate this data?
I’ll take our NIH paper in particular. The reason I can even look at this question is because there is data collection of disability status when you submit a grant proposal. But it’s not required and honestly, there’s lots of room for improvement in how they’re asking about disability. There are ways that are validated to ask about disability and it’s not “Do you have a disability: yes or no?”
We also were not able to get any demographic individual characteristics. The response is always to make sure that [the data] is at a level where you can’t identify individuals. And that’s important. But there are starting to be some more conversations around what level is that? Do we have enough depth of data to address the important kinds of questions to really create ways that we can take down these barriers?
The intersectionality between gender, race and disability could itself be a totally different thing. It’s complicated. It’s nuanced. But we need to at least start having these conversations.
To your broader question, though, is this again self-fulfilling prophecy. There has not been enough people with disabilities in this space to elevate the issue.
I do things differently. My brain thinks about things differently because of who I am — all of who I am.
When I first started on this path, I just knocked on doors and sent emails and phone calls and looked for answers and got quite frequently the response of, ‘You’re the first person to ask this question’. And I thought ‘How could that be?’
But we have to start to include the data, to see how well we’re doing so we can overlay opportunities or ways to improve, and then see how that is working out.
My goal in life is to change the way we think about disability. All I know is how to analyse data. I just happen to be an epidemiologist. This is the kind of work I do and that’s just how my brain works. I see data drives policy, drives change and that’s like a straight line of progress.
The problem is there’s not a lot of us doing this kind of research. Part of that is because we have such limited availability of datasets. So I’ve had to start from ground zero to advocate for data collection.
In epidemiology it’s like ‘You build it and they will come’. So if you advocate for enough datasets people will start to come to this space. But we’re still working on that.
Read my article, “Textbook case” of disability discrimination in grant applications at Nature Index
