Dr. Bonnielin Swenor's research aims to improve the health of persons with disabilities, by transforming traditional thinking on health disparities research. Over the past decade, there has been an increased focus on identifying and addressing health disparities among racial, ethnic, and socioeconomic minority groups; however, persons with disabilities have largely been absent from these efforts. Motivated by her personal experience with a vision impairment and resulting disability, Dr. Swenor is working to address this gap. Her work has focused on three interrelated areas: (1) determining the impact of visual impairments on long-term health and aging outcomes, (2) documenting healthcare disparities and improving healthcare utilization, quality, and access for those with vision loss; and (3) enhancing the inclusion of persons with visual impairments and other disabilities in the biomedical workforce. This research has sparked a reframing of importance of visual impairment on overall health, helped to reclassify visual impairment as a health disparity, and highlighted the need to include people with disabilities in science and medicine –which is critical to driving scientific innovation and improving patient care. Seeing the impact and broad applicability of this work, Dr. Swenor is now expanding her research framework, using an interdisciplinary and collaborative approach, to establish the evidence needed to design effective policies and programs that will reduce health disparities for persons with all types of disabilities.
Bonnie Swenor, PhD, MPH, Associate Professor of Ophthalmology at the Wilmer Eye Institute at Johns Hopkins and of Epidemiology at the Johns Hopkins Bloomberg School of Public Health
Episode 9, Transcript
DocsWithDisabilities Podcast #9
Dr. Bonnie Swenor
Lisa Meeks:
Hi and welcome back to the docs with disabilities podcast. I'm Lisa Meeks, your host, and I have the privilege of being in Baltimore, Maryland at Johns Hopkins University Hospital. And my guest today is Dr Bonnie Swenor. Why don't you introduce yourself?
Bonnie Swenor:
Thank you so much. I am an associate professor and my work focuses on understanding how vision impairment affects individuals lives. And I'm interested in determining how we can maximize health and wellbeing in people with vision loss and eye disease as well as reducing health and healthcare disparities in people with vision loss. And most recently I'm interested in enhancing the inclusion of persons with disability in science and medicine.
Lisa Meeks:
I have the wonderful benefit of knowing you personally and you are a rock star. I love our work together. Why don't you tell the audience about why this became a topic of interest?
Bonnie Swenor:
I was diagnosed with my, a degenerative eye disease when I was 26. It started with a hemorrhage in my retina, so hemorrhage in the back of my right eye and then I had subsequent multiple hemorrhages pretty frequently for a period of 18 months. I still have them. It's a degenerative disease. But for that first 18 months there was a pretty rapid loss of vision. And at that time in my life, I had just gotten married about seven months before and I had just mailed out applications to graduate school just a few weeks before that first hemorrhage.
So this was a really tough impact, I would say. When you transition to a person with a disability, it absolutely changes your role in society. And I was worried about the impact that would have. I was worried about my future. Again, I had just applied to graduate school, and it took me a long time to get to that point in my life. I had worked really hard, and I thought it was all over right. And after, not too long after that diagnosis, I was on disability leave from my job at the point because no one had talked to me about resources like vision rehabilitation.
As an individual who is visually impaired. My research questions almost always stem from my personal experience with vision loss and with disability. From that experience I obviously identify challenges in life and in accessing health care and navigating environments and integrating in society and being a scientist. From those experiences, I've been able to identify challenges and ways that perhaps we can make things better.
Bonnie Swenor:
As someone who has a disability, who's visually impaired and navigates the healthcare environment, both as a researcher and as a patient, I have seen the challenges that occur. And some of those challenges aren't always what you expect. From my viewpoint, those challenges are largely focused around the fact that we don't often look at the person as a whole person and we don't always meet them where they are. And I think when you have a disability, that fact is only highlighted. For example, when I go to a doctor's appointment and they hand me an after visit summary in normal size font, that's not accessible to me. I can't get that information very easily at least. I have resources to figure it out. But that's a challenge for me. When I started to lose my vision, when I was first diagnosed, I very much struggled with depression.
And that was really a critical part of my process of the disease from my viewpoint. But that wasn't addressed or considered. I think we need to do a better job at integrating care and taking a more holistic approach so that we have better health outcomes for individuals. And when we're talking about disability, we need to consider that. And I think we can do a better job at meeting the needs of patients.
Lisa Meeks:
It sounds like when you were at an ophthalmology office or a center for vision care as a patient and as you exit the building, you are handed a survey in regular font. No means of reviewing it from an accessibility perspective cause it's not electronic and not that delivery in electronic form would indicate that it's accessible either. But I think the message that you can receive, and correct me if I'm wrong, is we don't really care about your feedback. We haven't really thought about this. We're going to treat as much as we can of the disease. But beyond the scope of that, we're not considering the impact of what we do on patients.
Bonnie Swenor:
Right. To give an example of where the approach of taking holistic care falls short is when, for example, a patient is transitioning from inpatient to home care, right to the home. And there has been a lot of effort and focus on aging in place and home health care models. But are we considering sensory impairments that maybe preexisted whatever puts someone in the hospital, right? And so if someone was inpatient and they're transitioning to home care and we're putting resources into making sure that transition goes well, but we're not considering the fact that they have a hearing impairment or a vision impairment, which is affecting the way they're getting information about how they're supposed to care for a wound or take medication or manage those medications, we're not really doing everything we can. We're not setting them up for success. And until we can take a more integrative approach, we're in essence wasting resources.
Lisa Meeks:
You expressed how you went through a depressive episode when you were first diagnosed and as your vision was declining, and that that really wasn't addressed as part of your care. Now you're a researcher at Hopkins, so we're going to presume that you have good access to healthcare and you are right there. So, getting to the physician was probably easier for you than it might be for the average patient. But I'm thinking about some of the patients that are impacted by these social determinants of health, right? That they have barriers to transportation and that if they're trying to maintain employment, taking any time out for a physician's appointment risks losing their job, which is the only thing at this point, you know, potentially keeping the household going. It could be it a single income family. And I'm wondering as an outsider thinking about it, I wonder if there aren't multiple missed opportunities for kind of wrap around care of a population if we are so focused on a system or an organ or something specific at the detriment of looking at an individual's mental health care. And I know that that's a really big thought to wrap your head around, but it's, I think it's true for every profession.
I just have to wonder in a population that is being diagnosed with degenerative eye diseases that we'll eventually in being blind, we know that that's going to cause some form of a mental health concern, whether it be anxiety or depression or a combination of the two. I'm wondering, you know, what it would look like to have integrated services in ophthalmology.
Bonnie Swenor:
This is something that recently we've been discussing a lot. The integration of mental health, ophthalmology and honestly integration of mental health in any specialty is complicated. The rates of depression and anxiety are very high in patients with vision impairment. And I think lots of people can understand why that is, but it's not often integrated for sure. And it's complicated the reasons why.
I think the current medical system doesn't always allow for enough time to address mental health concerns. Ophthalmology doesn't always provide enough resources to address those concerns within the setting. But for patients from their perspective, this mental health component, the emotional component of losing your vision is very real and impacts the individual immensely. And again, if we're not integrating care or thinking about the whole person, we're not fully addressing the full impact of the vision impairment. And how do we do that? And to the point of social determinants of health and health disparities, how do we identify who's at risk for depression, for anxiety, and who has the ability to access appropriate resources? And that's a really tough question because I don't think you can tell just by looking at somebody. When I was first diagnosed, I presented at the retinal specialist. And I had gone through a pretty rapid decline in my vision when I was first diagnosed. I went to every visit with my husband who was very supportive and very concerned. And, at one of the visits my retina specialists said, “Bonnie, you look really depressed.” And I was, and I said, “Yeah, I am. I'm losing my vision. Of course.”
Bonnie Swenor:
I had a hard time reading, seeing faces. I had stopped driving. My functioning kind of fell off a cliff and I was again, very depressed. So I was struggling and I couldn't see a future quite honestly. I was worried about our financial wellbeing, right? We were, we were two income household, even though we didn't have kids yet, but I was very worried about how we were gonna have finances. And I don't have a strong family social support network outside of my husband. That was nonexistent unfortunately. And it was really just me and my husband working through this, and that was really hard quite honestly. So when my retina specialist asked if I was depressed and almost seemed surprised by my answer, of course I am perhaps from his perspective as a college educated middle class woman showing up with the support of a husband, that maybe surprised him. But from my perspective, how could he be surprised?
Bonnie Swenor:
And that disconnect I've thought a lot about in the past 15 years, right? I was mad because it really highlighted the fact that he was there really to take care of my retinas as he should have been. And he was good at it to be clear, but not the rest of my life that was quite honestly falling apart. And I didn't know where to go and I didn't know who to talk to about those things. And he wasn't there to help me and I was so sure he was supposed to be the one to help me. And I didn't know who was going to help me.
Lisa Meeks:
And was there ever a referral to counseling or when he asked if you were depressed, was there follow-up?
Bonnie Swenor:
Uh, no, no, there wasn't unfortunately. And even if there was, I'm not actually sure I would have gone at that point, but I should have for sure.
Lisa Meeks:
Well, I think that's the other thing that's so impactful that physicians don't think about is that you have someone right in front of you. You have someone in your office in that moment and they're being vulnerable to you. They're telling you, yes, you know, or you're seeing the symptoms and the space between, “Let me refer you to somebody who does this,” or, “you should probably go see this person,” could be the difference between life and death. Should we not be training physicians to see the whole person and to think about the impact of whatever system they work on, the impact of that on individuals? I could see this being really relevant in something like oncologists, which oncologists have had psychiatrists on consult for years. This has been part of the normative practices to have a psychiatrist on board. But rheumatology, where you're losing functioning. Ophthalmology. Audiology. All of these specialties where there's a good chance that people will be impacted by disability. And should there be some thought to treating the whole person?
Bonnie Swenor:
I have been public before about the fact that in this period I absolutely considered if my life was worth continuing. It was a very hard time. I definitely needed some intervention at that point. It was hard. And to me, the message now at this point in my life is, it is hard to understand the context of the patient's life and the impact of what is going on with them. And that is what disability is. It is the impact of the disease, of the impairment in context. And without that context, you don't understand the full picture and you're not taking care of the full person.
Understanding the patient's side and bringing that more into clinical practice is the next step. That's the future. That's how we move care forward. We have to do a better job at integrating these perspectives to move the needle. And part of that is including persons with that lived experience in research, in medicine, in clinical care, because those people have that nuance perspective that lives in both worlds. They talk both languages and that's what we need.
It's gonna take a shift in how we view disability, in how we train individuals, in how we take care of people. It's complicated, but we have to start thinking about it.
Lisa Meeks:
Recently, you've been doing some work on why more people with disabilities are not going into biomedical sciences and looking at it from a diversity perspective of, you know, if we all agree and we have that diversity adds to our knowledge, it makes a richer environment, it informs healthcare in a meaningful way, then we need to be looking at how we include disability. So where do you want your work to lead? And in five years, what does this look like?
Bonnie Swenor:
To increase the inclusion of researchers and clinicians with disabilities that we have to address the barriers for sure. And they're varied. My work really has focused on the side of once training has completed, and I think those barriers are different perhaps than when you're in training, being someone that's been in both places with a disability. So when I became a faculty member, some of the barriers were honestly unexpected. I just didn't have a peer, which is a barrier in and of itself, with a disability to connect with. And I think that is a problem, right? It, this unique experience of being a scientist or a clinician with a disability, you need to have someone else to go to for advice and counsel on this process. And having someone else like you either with a disability or with the same disability is critical.
I'm lucky enough that I have found that network at this point in my career, which has been invaluable to me. That's important. Mentorship just in general, surrounding yourself with people who are supportive of you and understand your disability has been critical and has been critical to me. You know, I am very privileged in that I have a vision impairment and I'm in an ophthalmology department. I am not that strange in my department because I represent the patients that walk in Wilmer all day, every day. I recognize, I am very privileged in that perspective as compared to other individuals with disabilities in other departments who maybe their department may or may not understand that disability. So I think the mentorship component is huge. There's other issues about accommodations that can be problematic for individuals trying to make science and clinical careers. And some of that comes from money. And the way that we pay for accommodations, largely academic institutions, is not always ideal. For example, in most institutions the cost of a disability accommodation is filtered down to the hiring unit. And the problem with that is that can create not only a power imbalance between you and your department. But it's also not in line with the way the ADA policy is written, which indicates that consideration for financial hardship should be determined based on the entire institute or entities financial budget, not the hiring unit. So when an accommodation comes from a departmental budget or a hiring unit’s budget, it is not exactly in line with how the spirit of the ADA was written. And that can lead to practices, our limitations in the hiring and retention of persons with disability that may not be ideal.
There's other issues that are perhaps more nuanced but are certainly complicated, which is how do you start a career in science and medicine with a disability? There's metrics that we use for promotion and success. Things like getting grant funding, going to conferences, getting invited talks, being viewed as capable and able by your colleagues around the world who may have varied views of disability. That's critical to how we have structured this system. And depending on if your disability is visible or not or what your disability is, there can be real challenges to that that are driven by stigma. And how do you overcome those things? How do you get the extra funds to manage an accommodation at a scientific conference that's not at your institution? Applying for a grant in and of itself may be a challenge for certain individuals.And if that's a marker of career success, you may be at a disadvantage.
There's also certain policies within federal funding like the NIH and NSF, that may not be ideal for persons with disabilities. So for example, the NIH has a supplement that is geared towards supporting researchers with disabilities, but it only supports principal investigators on R mechanisms. And unfortunately it does not include individuals on K awards. So it leaves individuals at early stages of their career who may really need and benefit from that disability supplement at a loss. They are not eligible. So there are barriers to developing and launching and maintaining a career with disabilities that I think we are not talking enough about.
Lisa Meeks:
You've recently taken this passion for disability inclusion and started to marry it to some scholarship. And you were talking about some of the barriers that you've identified and now you're doing some analysis on the barriers. You've had a couple of publications on this topic. Can you share that with our audience?
Bonnie Swenor:
Yes, so you and I, Dr. Meeks and I have recently published a few papers on this topic. One paper in the New England Journal of Medicine publishing about really a roadmap of how you can enhance inclusion of faculty members, researchers and clinicians with disabilities. It became quite obvious through my personal struggle and my investigation of how to build my own career that this was missing. And when I reached out to you, you echoed that. And so we are trying to fill that void. I also recently wrote a piece of my mind article in JAMA sharing my story and some of the struggles I've had. And it took me a long time to write that article quite honestly. And it took a lot of people, you included, to push me to submitting it. And we have a few other projects in the works, digging deeper into the barriers and trying to figure out how we can start to address some of these barriers for faculty members at the faculty level, for scientists and clinicians. Really again focused on how we can enhance inclusion once you get beyond training and the value of that being that individuals who are at the faculty level are really critical to this whole life cycle of the value of disability in science and medicine. Without individuals at the faculty level, we're never going to see the full potential of training individuals with disabilities. We need those faculty members to mentor the trainees with disabilities. So we've got to work on both ends. If we really want to create this integrative holistic approach to taking care of patients with disabilities, then we've got to have clinicians and researchers with disabilities driving that and participating in those efforts.
Lisa Meeks:
What do you say to someone who either is in the pipeline or thinking about entering the pipeline that has a visual disability?
Bonnie Swenor:
Well, the first thing I would say is keep going. We need you please. Reach out to someone who is a scientist or a clinician or someone that you can identify meaningfully who is in the field of your interest or in an area or as a scientist or a clinician in general who has a disability or the type of disability you identify with that is critical. You need to be able to understand that this is possible and to have someone who will help you through some of these challenges. So that's so important. I think the other thing to know is you've gotta be ready for the hard work cause he got to work a little bit harder and that's the reality. You've got to work harder. You will get questioned, you will get challenged.
I think for me, what's been a journey, and I have to remind myself of it constantly but is helpful, is to always understand why my perspective is valuable and understanding that I could have an impact. So my vision impairment is a challenge and is very hard for sure. But it also gives me a perspective that gives an opportunity. And I feel like that's my role and that's my job, is to use that challenging situation to make things better for others. That's why I do this. And I think figuring out what is meaningful to you with your own unique perspective is critical. And quite honestly, that's not specific to disability. That's something we all have to do. But as a person with a disability, I think that's just even more important.
Lisa Meeks:
I think it's important, absolutely to find mentors that have a concordant disability and experiences. That's the type of information you can only get from a person who's lived that experience. But I also want to underscore the importance of mentorship and community period. And you know, last night after dinner we came back, we were having this conversation about the first email that was sent. And I thought about it a lot this morning, August 7th, 2018, shifted my life in a beautiful way when you reached out. And the work that we've done since then has been so meaningful. And the work that we will do will be equally meaningful. But when you find your people and they get it.
Bonnie Swenor:
Yeah.
Lisa Meeks:
And they have the same goal...
Bonnie Swenor:
It’s so important.
Lisa Meeks:
It's magical.
Bonnie Swenor:
It’s so important.
Lisa Meeks:
And I think not just for us, but for people out there in any profession, you know, finding your people just in life, finding your people is super important.
Lisa Meeks:
And I want to encourage the listeners to try to find, you know, that sense of community. And one of the mechanisms for doing that that we started a few years ago was the Hashtag #docswithdisabilities. It really is a hashtag about the whole community, whether it's nurses, dentists, ots, pts, PhDs. It's really about bringing a community together that are all involved in medicine. So I encourage the listener to connect with that on Twitter. And then you have a Twitter handle. Do you know what it is?
Lisa Meeks:
Okay. I don't know what mine is. It’s like, do you? I know, I’m like what’s my email?
Bonnie Swenor:
@BonnieSwenorPhD.
Lisa Meeks:
@BonnieSwenorPhD. The new way to get in touch with people is Twitter, so I encourage individuals to reach out and if you don't hear back the first time, try, try again.
Bonnie Swenor:
Be persistent.
Lisa Meeks:
And you know, maintain your passion and I think and your perspective. So the three p's: be persistent, be passionate and maintain perspective because there are going to be good days and bad days. And that's so true for any researcher. But I think especially true when you layer on the potential bias that's inherent in the identity of being a person with a disability.
Bonnie Swenor:
Absolutely.
Lisa Meeks:
So I have to get on a big jet plane and go back to Ann Arbor, but thank you so much for your time and it's always great to be in Baltimore with you and your team, who are amazing. You guys are doing great things, and Bonnie, you are going to change the world for the better. And I'm so glad that you're doing this work.
Bonnie Swenor:
Thank you.
Kate Panzer:
Thank you for joining us for today’s episode of DocsWithDisabilities. On our next episode, we chat with Sarah Sternlieb, a resident physician who has found peace and a renewed passion as part of her journey through medicine.
This podcast is a production of the University of Michigan Medical School, Department of Family Medicine, MDisability initiative. The opinions expressed in this podcast do not necessarily reflect those of the University of Michigan Medical School. It is released under a creative commons, attribution noncommerical, nonderivative license. This podcast was produced by Lisa Meeks and Kate Panzer.
*This podcast was created using excerpts from the actual interview and is representative of the entire conversation. Interviewees are given the transcript prior to airing. Some edits may reflect grammatical and syntax adjustments for transcription purposes only.