Episode 101: Healthcare Disparities for People with Disabilities

Lisa Iezzoni in wheelchair riding past Byerly Hall in Radcliffe Yard.

Photo by Lou Jones

EPISODE 101: Healthcare Disparities for People with Disabilities, with Lisa I. Iezzoni

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On This Episode

For 25 years, Lisa I. Iezzoni’s research has focused on improving the lived experiences, healthcare quality, and health equity of adults with disability, particularly mobility disability. It’s only recently, though, that research she conducted revealed the depths of medical inequity for people with disabilities. In this conversation, our hosts ask Iezzoni about her life’s work—and the difficulties in making healthcare more accessible.

This episode was recorded on November 16, 2022.
Released on September 21, 2023.

Guest

Lisa I. Iezzoni is a professor of medicine at Harvard Medical School, based at the Health Policy Research Center and the Mongan Institute at Massachusetts General Hospital.

Credits

Ivelisse Estrada is your cohost and the editorial lead at Harvard Radcliffe Institute (HRI), where she edits Radcliffe Magazine.

Alan Catello Grazioso is the executive producer of BornCurious and the senior multimedia manager at HRI.

Jeff Hayash is a freelance sound engineer and recordist.

Marcus Knoke is a multimedia intern at HRI, a Harvard College student, and the general manager of Harvard Radio Broadcasting.

Heather Min is your cohost and the senior manager of digital strategy at HRI.

Anna Soong is the production assistant at HRI.

Transcript

[MUSIC]

Ivelisse Estrada:
Thanks for joining us on BornCurious, a new podcast from Harvard Radcliffe Institute. I’m your cohost Ivelisse Estrada.

Heather Min:
And I’m Heather Min.

Ivelisse Estrada:
Well, here we are, our first episode of our first season.

Heather Min:
Super excited—super curious—and super excited to welcome our guests and listeners to our podcast.

Ivelisse Estrada:
Me too. BornCurious is brought to you by the relentlessly, insatiably inquisitive folks at Harvard Radcliffe Institute, one of the world’s leading centers for interdisciplinary exploration. This season, we have an outstanding lineup of episodes, as Heather and I talk with some of the fascinating people here at the Institute.

Heather Min:
And we’ll mix it up a bit. Meaning that most episodes will be a conversation with our guests.

Ivelisse Estrada:
Other shows will feature highlights from some of the most interesting conversations that the Institute has hosted.

Heather Min:
We’ll be exploring a range of topics, including talking about graphic novels, wounds, and language and thought.

Ivelisse Estrada:
Yep, we’ll also consider listening to whales, and we’ll dig deep into the opioid crisis.

Heather Min:
With our first guest, Dr. Lisa Iezzoni, we’ll be learning about mobility disabilities and the many challenges people with disabilities face.

Ivelisse Estrada:
For 25 years, her research has focused on improving the lived experiences, healthcare quality, and health equity of adults with disability, particularly mobility disability.

Heather Min:
Dr. Iezzoni is the 2022–2023 Sally Starling Seaver Fellow here at the Radcliffe Institute. But she is not new to Harvard University. She earned an MD from Harvard Medical School and a master’s in science from Harvard School of Public Health.

Ivelisse Estrada:
So let’s dive in, shall we? Thank you for sitting down with us.

Lisa Iezzoni:
Thank you so much for having me.

Ivelisse Estrada:
You have a very personal connection to your research. Would you care to talk a little bit about that, about your origin story?

Lisa Iezzoni:
My origin story—OK, you have to first understand that I’m an old person, OK? But when I was a young person, I started having these odd sensations in my body when I’d be jogging or just hanging out. And it took four years for them to be diagnosed as multiple sclerosis. So I was diagnosed officially in 1980, when I was 26 years old. And so I’ve had symptoms of MS now for 46 years. And I’m OK with getting old because it means I’m still here. [Laughs]

I started using a wheelchair in 1988, when I was 34. And I now, basically, have no mobility whatsoever in my legs. Although, the one thing that I can do is transfer, which allows me to be able to be fairly independent, compared to people who cannot transfer.

Ivelisse Estrada:
This really had an effect on what you decided to do for work.

Lisa Iezzoni:
Well, what other people decided I could do for work. [Laughs] OK, so I had been a medical anthropology undergraduate. I took rocks for jocks as an undergraduate. I hadn’t been pre-med.

Heather Min:
Rocks for jocks, I have to say, I’m kind of curious, were you a jock?

Lisa Iezzoni:
No, that was what I was distinctly not. Although, I will emphasize that I actually was extremely appreciative of the fact I could walk when I could walk. Young people are invincible, right? They don’t think about their legs moving underneath them, but I did.

I came to Boston in 1976 to study health policy at what was then called the Harvard School of Public Health. And when I was there, these wonderful doctors said, Lisa, why don’t you think about going to medical school. It would just give you so many more options. So I now had to go beyond rocks for jocks, take all these pre-med courses, but I did.

And I was able to, as I said, matriculate at Harvard Medical School in September of 1980. But that is when my MS symptoms came back with a vengeance. I could no longer ignore them. I would run into trees, parked cars. I had to pay attention to this.

And it was 10 years before the Americans with Disabilities Act was passed. And it was a pretty brutal time also to have a disability in medical school. It was an era when people were actually private about their health. When I talk to students about this, I talk about the fact that it was even embarrassing for women to say that they had breast cancer. There were no pink ribbons at that time.

And so I won’t go through all the details about what happened during medical school, but suffice it to say that the administrators at Harvard decided, in their infinite wisdom, that they were not going to support my application for an internship or residency. And without that, I couldn’t apply for an internship or residency. And so I was not able to become a practicing physician. I have an MD after my name, but I’ve never practiced a day in my life.

Heather Min:
I want us to pause, and applaud, and note that you were a woman in medical school in the—in the ’80s. And that alone is a challenge and a remarkable achievement. And the fact that you finished, even though you couldn’t continue.

Lisa Iezzoni:
Well, there were actually a lot more women in medical school by the early 1980s. And the late Carola Eisenberg, who was dean of students when I was there—and died at 100 fairly recently, I think—would knit in the classroom. And so there are a whole bunch of us women sitting in the amphitheater, knitting. And so I made a lot of sweaters, which—not all of us knitted.

But I was fortunate, though, in the following way, that I did have the master’s degree in health policy. And so I was able to go into health policy. And it turned out that 1984, when I graduated, was kind of a banner time for major changes in how Medicare was financed, how quality of care was thought about. So I was really able to go into health policy in an exciting period, with wonderful colleagues. And so really, launched my career that way.

And so, it was interesting, when I was in medical school, people often asked me whether I faced sexual gender discrimination. Trust me, disability trumps gender every time. And so I do not feel that I actually faced gender discrimination, but obviously, I did in terms of my disability—yeah.

Ivelisse Estrada:
So you recently gave your talk, your fellow’s presentation at Radcliffe. How did you find that experience?

Lisa Iezzoni:
I was so nervous about giving that talk. I give talks all the time. As you can kind of tell, I can talk about disability until the cows literally come home. [Laughs] But this was going to be a new talk—it also required me to think about the audience more. And I will be quite honest with you, that it became clear to me pretty much immediately that I needed to give a little bit more context about disability in the talk. I needed to give a little bit more kind of basic disability 101—medical models, social model.

And so I probably started writing the talk three times. The third, so the way that I finally made sure that I had it ready was that my husband and I, during Indigenous Peoples weekend, drove to Canada. And that was a long drive. And I said, OK, I’m going to take a pad of paper and a pen, and by the end of this trip, I will have the talk mapped out. And so that just forced me to do it. And once I had it mapped out, it really flowed.

Ivelisse Estrada:
I thought the question-and-answer session was fantastic, actually.

Heather Min:
And I loved the disability 101 section as well.

Lisa Iezzoni:
Yeah, I was really happy to have the opportunity to do that. And also, it gave me an opportunity, because I knew that this was going out to a public audience, to have the slides have more pictorial elements to them than I might ordinarily do at a medical grand rounds talk, for example. And so that was really fun to do. It allowed me to do some research into like the Perkins School for the Blind, that kind of thing. So it was—in retrospect, now that it’s over, it was a great experience.

All:
[LAUGHTER]

Ivelisse Estrada:
During your talk, you mentioned the independent living philosophy a lot. But the independent living philosophy seems really integral to disability rights, the disability rights movement, and also to the success of the Community Medical Alliance that you’re studying now. I wonder if we could talk a little bit more about that philosophy, what it means for people with disabilities.

Lisa Iezzoni:
OK, sure. That’s a great question. So I, of course, am going to go back a little bit in history. Starting in the 19th century, physicians became the arbiters of who was a meritorious disabled person. And what I mean by that is who, because of disability, would merit things like welfare, subsistence, support to be able to just get by.

There had been a sense that people can fake disability for secondary gain. And so doctors became the arbiters. Because new things were being invented, like a stethoscope, like an X-ray, like an ophthalmoscope. And so now, all of a sudden, doctors had the ability through putatively objective means to determine whether somebody really had the quote-unquote “disability” that they purported to have.

The medical model very much located disability within individuals. People had disabilities because of trauma, because of disease, because of disorders. The role of the person with a disability was to obey their doctor, to follow instructions that they were given, to try to find a cure or an effective treatment. And if they couldn’t, they were expected to adjust to loss and the limitations that they had.

Starting on—really with the millions of returning World War II veterans, many of whom returned with significant injuries, there began to be an impetus for trying to figure out how to accommodate people with disability to participate actively in their community, like having a job, having a family, having a home. And that was really the springboard, although there were other things that I mentioned in my talk, for the disability rights movement that started in the 1960s. It originated in Berkeley, California.

It really did focus on the notion of independent living, but also a social model of disability, where disabilities were viewed as the result of a society that cannot accept, or tolerate, or support difference, that people might get around differently, might communicate differently, might have different ways of thinking or emoting. Society wasn’t accepting of that.

And so the notion was to change social thinking, to kind of change awareness of people about how people do things differently. And the independent living movement and social model of disability really viewed disability as a civil rights and social justice type of issue, rather than accepting limitations and loss.

Heather Min:
Recently there was an article in the Boston Globe, as well as an article in the New York Times, in which your research has shown that practitioners of medicine—physicians—are rather disinclined to provide care for people with disability. And I have to say, that was shocking to me.

Lisa Iezzoni:
I had been working in health care disparities for people with disabilities since the late 1990s, looking at health care that people with disabilities received. Specifically, my focus was on three different areas: One was primary care. Another was cancer care. And another was reproductive healthcare.

It’s important to note that, starting in 2000, the Healthy People Initiative, which the US Public Health Service folks put together every 10 years to look at what priorities should be for public health in the coming decade, for the first time identified people with disabilities as experiencing healthcare disparities. And what was interesting about the way that they made a note of that was that they attributed that disparity to erroneous assumptions among healthcare professionals about the goals and expectations of people with disabilities, wanting to have well-being, wanting to feel good, wanting to do what everybody else does.

But, in general, people with disability are less likely to get routine screening services. They are also less likely to have their doctors recommend these services. So it’s not just that they don’t get them, it’s that their doctors don’t recommend them. And this is kind of a worldwide thing.

But I’m also going to introduce a social determinant of health issue here as well. And that is that, worldwide, transportation is hard for people with disabilities. These are just worldwide things. And because of that, you also find sometimes late diagnoses. You also find that physicians may not recommend the same level of treatment for people with disability as for other people.

And one of the things that was especially worrisome in some of the research that I did for that particular article, but that we also found in some of our research, is that people with disabilities might have higher rates of cancers. And some of this can be explained by certain biological things that might be going on. But some of it can also be explained, for example, by people who are disabled early in childhood and got a lot of radiation exposures because they were given lots of X-rays.

But it is certainly true that there are other countries around the world that have a different social compact with their citizens. And especially when we think of, like, the Netherlands is actually—for many of us in the disability community, it’s one of the exemplars of accessibility. And from decades ago, that they just decided that this was something that they needed to do, that there were members of their community who needed certain types of supports, and they felt it was the community’s responsibility to provide that.

Heather Min:
So what are some examples of how they do that?

Lisa Iezzoni:
Housing—a lot had to do with housing. And a lot had to do within the housing—are bathrooms accessible? I actually have visited Amsterdam and the Netherlands, and it was amazing. The only problem that I had was that the cyclists were riding along so fast, [laughter] and I was terrified that I didn’t know how to cross the street in my wheelchair. There are all these cyclist. s rolling along. But the bathrooms were amazing in the Netherlands, compared to what we have here in the United States. So we’ll just leave it there.

And so I, in 2016, decided, OK, I’ve been talking to people with disabilities enough, I need to start talking to doctors. And so I submitted a grant application to NIH to get funding to do a survey, a nationwide survey of doctors. It wasn’t funded the first time around; it was funded the second time around.

But one of the things that is a best practice in survey research, in designing a survey—because we had to design our own survey for this purpose—is to first do interviews with potential participants, the kind of people who you want to participate in your survey. And so that required interviews with doctors. And what was reported in the New York Times was from the focus groups and interviews that were done before the survey.

We had actually, somewhat ironically, already reported the survey results. So the survey results have been out there. Since February of 2021 was when we first reported the somewhat kind of terrifying result, that 82.4 percent of doctors feel that people with disability have worse quality of life than other people.

The time that this was being reported was when COVID was still very much in effect: February of 2021, we were having a new surge. And people with disabilities were terrified that if there weren’t enough ICU beds, if there weren’t enough ventilators, that they would be put to the back of the line for having access to those resources.

And so another thing that the survey showed, that we had already reported on, was that only 42 percent of doctors feel strongly confident that they can provide equal quality of care to patients with disabilities as they do to other people. So would you want to go to a doctor who is not strongly confident that they can provide equal quality of care to you? And only 56 percent of doctors strongly welcomed people with disabilities into their practice.

There was another report that came out in January of 2022 about the lack of knowledge of doctors of the Americans with Disabilities Act—which, again, had passed in 1990—that I won’t take the time to go into right now. But what was really kind of interesting to me is that those reports did get some press attention—some.

But it was only when my colleague, Tara Lagu, had all the time for these couple of years, since the interviews and focus groups, had wanted to report on some of the just really extraordinarily troubling and problematic statements that physicians had made, that when that paper that she brilliantly wrote and shepherded, was the lead author on, came out, that people really, suddenly, picked up on it.

And so it was an interesting lesson for me as a researcher, that you can present numbers, but numbers are kind of a cool medium. But when you present stories and statements like that, they become a hot medium, and they just pop. And trust me, they’re still popping. [Laughter] Yeah.

Heather Min:
If I may follow up, what are medical school students being taught?

Lisa Iezzoni:
In the United States, not much. And this is slowly beginning to change, not because of the medical school educators but because of the students. Young people now for many years have gone to school with their peers who have disability. And so a lot of young people just treat it as a normal thing to have people with disabilities in their midst.

And a small number, maybe only like 2 or 3 percent of medical students, self-identify as having a disability. And that’s very critical. Because there are many disabilities that are not apparent: mental health disability, often hearing disability, even a vision disability at times. Certainly, there are many disabilities that people may feel afraid because of ableist and discriminatory attitudes, that they don’t want to report that they have a disability.

And so there is some movement afoot to beginning to teach more about disability in medical schools. But it’s really being driven by the students, which is an interesting thing. However, it’s still really so worrisome that in their report early this year on the framework for equity for people with disabilities, the National Council on Disability called for requiring competencies specifically related to disability in both medical and other healthcare professional training.

Ivelisse Estrada:
I wanted to ask, is it possible that the number of people who experience disability is being underreported? You mentioned that there’s a lack of information in public health surveillance and medical system records about disability.

Lisa Iezzoni:
That’s exactly right, that disability is not one of the categories of demographic variables that are routinely collected, like age is—people don’t dispute how you collect age very much. But there certainly is variation now in how you collect information on sex and gender, gender identity, and so on. Race and ethnicity, certainly there has been a lot of challenge in accurately collecting that. But there is a motivation to collect that, because we’ve known for decades about disparities relating to race and ethnicity.

But disability still has not made the cutoff. And there are other categories, like sexual orientation, also is not routinely collected. And there are challenges to figuring out exactly what questions to ask for that, because language is evolving and concepts are evolving. But it has been a really big problem. Because if you don’t have the data, you don’t have the capability of making policy or evaluating the impact of that policy that you do make on people with disabilities. And so it really is a big issue.

Another issue is that the data that we do have—the data that indicates that about 67 million adult Americans have at least one disability—comes from self-reports. And, again, people may or may not feel comfortable mentioning or talking about the fact that they have a disability.

Ivelisse Estrada:
So is this where the stories would come in then? Because, obviously, we need policy change.

Lisa Iezzoni:
Right. Well, I think that stories give you these aha moments, where you say, Oh, now I get it. Now I understand. So, for example, one of the earliest women who I interviewed—with my 300-plus people that I’ve interviewed with disability—said that her doctor never got her out of her wheelchair, ever, to do a pap test. And for those of you who are listening who don’t need pap tests: trust me, you can’t have one when you’re sitting in a wheelchair. [Laughter] It’s just not physically possible.

And so you have to be gotten out of your wheelchair to do the pap test. And this woman was in late middle age. Doctors assume that women with disabilities are not sexually active and, therefore, are not at risk of human papillomavirus, which causes most cervical cancers. And so they kind of wipe their hands clean, and say, I don’t need to bother to do a pap test on this woman because she can’t possibly be exposed to human papillomavirus. And so when you hear stories like that, that for decades somebody has never been just gotten out of their wheelchair, it just sticks with you.

The thing that kind of astonishes me is that they don’t understand that in this very specific instance, about getting somebody out of a wheelchair and onto an exam table, there are height-adjustable tables. Just like you have a dentist chair that goes up and down when the dentist presses a pedal on the floor, there’s the same thing for exam tables.

Well, guess what? If you get a height-adjustable exam table it’s a win, win, win. Because it’s a win for the patient. It’s a win for doctors, who some are of shorter stature and some are of taller stature. And so the doctor can actually set the table to be ergonomically appropriate for the doctor to do the best physical exam. And number three, one of the professions with the highest rate of occupational injuries is assistants in a doctor’s office or a hospital because of the back injuries that are caused by transferring patients. And so now you can avoid having those injuries or minimize the risk of having those injuries. And so it is just astonishing that people haven’t gotten it yet.

Ivelisse Estrada:
I want to ask about what this means in the setting of one’s home. So if someone has a disability that keeps them at home, like many of the people who you’re studying in your current project with the Community Health Alliance.

Lisa Iezzoni:
I live in a 1911 house that has a basement and three stories on top of it. I can no longer walk. I am a privileged person. I have the money, I was able to install a ramp to my house, that I defy you noticing that it’s a ramp, because, of course, we can’t show that it’s disability equipment. It has to look pretty, right? And I am being ironic as I’m saying this, if people can’t hear that in my voice. [Laughter]

I’m able to put grab bars wherever I want them. I have chair lifts. People will ask me how many wheelchairs I have, and I actually would have to pause for quite a while and count them. Because I have to have one on every floor of my house because I can’t walk. And so—however, I’m, as I said, privileged.

People with disabilities are worse off on social determinants of health. They’re more likely to be poor, uneducated, unemployed. My home office is actually on the third floor of my house. I sit there, and I feel like I’m surrounded by these 80-foot trees. But that’s because I had the money to put in all these incredible stair lifts, and a lot of people don’t.

And so I remember interviewing people who would come home after a hospitalization, would be able to be gotten up to their bedroom floor of their house somehow, or somebody carrying them, but they wouldn’t be able to leave, because they couldn’t get around without a wheelchair. And there was no lift device for them to be able to do that—so absolutely.

And this is true also for other disabling conditions. For example, we all are now taught to have smoke detectors in our house. Well, if you can’t hear, you have to have a light cue or another cue that would allow you to know when there is a risk of a fire in your house. And so for the people that were members of the Community Medical Alliance, which I’m going to be researching as part of my fellowship, these were people with severe disability. And let me just say that getting accessible housing is one of the leading problems for people with disability in the country right now.

Heather Min:
And it’s because they’re not available?

Lisa Iezzoni:
Because it’s not available—part of it, again, depends on the part of the country where you live. Because we live in a place where there’s older housing stock. And so it’s very hard to renovate that housing stock. But architects, even where they’re building new housing, don’t necessarily like to put in, quote-unquote, “disability features” because they might not be attractive. People don’t want their house to look like a disabled person lives there.

So I remember in one of my first projects, interviewing a woman who also had multiple sclerosis, and I tried to interview people in their homes, if I could, so I could see for myself what it was like to get around where they lived. And I remember her very proudly pointing at her grab bar, and saying that really doubled as a towel rack, so she could hide the fact it was a grab bar by covering it with a towel.

Heather Min:
You’ve raised so many things that are still yet—or are just starting to be spoken of. So what are the priorities, in your mind, in terms of where the movement is right now? Obviously, you work in healthcare, but could you speak about where that is in general?

Lisa Iezzoni:
Well, there are centers for independent living around the country that part of their job is peer counseling and peer support. But also, part of their job is advocacy. And so a lot of advocacy now is around housing, around making sure that when new housing developments are built that there are accessible housing units within them. Because, frankly, part of that is the law. The Fair Housing Act and so on, there are certain legal requirements.

I think that—one of the things that I often say when I give my disability 101 talk is that disability occurs in every life across the lifespan, with very few exceptions. That is one of the reasons why it’s just so remarkable that we don’t have more of an impetus for making sure that environments, and policies, and just attitudes of society are not ableist.

I think that there’s still so much work to do. And I’m really hoping that youth will take it forward, just like they’re helping us with climate change. So we’re going to dump a lot on their plate in terms of advocacy. But I think that I feel very privileged, not only in what I’ve been able to do in my career but also that people with disabilities have been willing to talk to me and share their stories with me. And that I’ve had the ability, at times, to be able to share those stories with other people to be able to get the message out.

Heather Min:
How can all Americans be an ally in this?

Lisa Iezzoni:
By looking at their Thanksgiving dinner table, if they eat Thanksgiving dinner, and realize that there is probably somebody sitting at that table who has some sort of disability. And thinking through—OK, what can I do to make that person’s life better?

You wanted to ask about my fellowship.

Heather Min:
Yeah, what’s your—

Lisa Iezzoni:
Well, I cannot tell you what a gift this is to get the fellowship. [Laughter] I remember when somebody called me from the fellowship office to say that I had gotten it. And my response was, I promise not to hyperventilate. [Laughter] I was just so excited to be accepted into the program.

And I wasn’t really sure what to expect, other than that I would be in a very different environment. It’s so beautiful here, as well. And the other fellows, I learn so much every day. It just feels—every day I come into the fellowship, I feel like I’m going to learn something that’s going to change my way of thinking. And so it’s just been remarkable.

Ivelisse Estrada:
And have you had any run-ins with your fellow fellows that have really sparked your thinking or the way—have made you look differently at what you’re doing?

Lisa Iezzoni:
Well, the word run-in sounds like it would be a negative thing.

All:
[LAUGHTER]

Lisa Iezzoni:
Everything, so far, has been truly positive.

Heather Min:
Well, thank you for helping to create a more informed citizenry so that we can start with knowledge and awareness, and then be fired up to do something about it.

Lisa Iezzoni:
Yeah, well, thank you very much for having me.

Heather Min:
The BornCurious podcast is brought to you by Harvard Radcliffe Institute.

Ivelisse Estrada:
Thanks for joining us. You can find BornCurious wherever you listen to podcasts. And to learn more about Harvard Radcliffe Institute—

Heather Min:
Visit radcliffe.harvard.edu.

[MUSIC]