The Adjustable Table Episode 2: Healthcare Access. Sponsored by Wells Fargo.
[Ashley Inkumsah]:Hello everyone and welcome back to the Adjustable Table, a four-part video series created to raise awareness and conduct conversations around disability rights and disability justice. My name is Ashley Inkumsah and I’ll be helping to moderate today’s conversation with my colleague here at the World Institute on Disability, [Moya Shpuntoff].
In our work, we hope to bring the real experiences of people with disabilities into conversations about what’s necessary for people with disabilities on a global scale to truly be supported, included, and celebrated.
On today’s episode, we’re discussing healthcare access with our wonderful group of panelists who each have an expertise in disability rights and disability justice. And special guest, the wonderful Imani Barbarin.
[Imani Barbarin]:Hello.
[Moya Shpuntoff]:Imani Barbarin is a disability rights and inclusion activist and speaker who uses her voice and social media platforms to create conversations engaging the disability community. We are also being joined by our amazing group of panelists who each have a well-rounded expertise on the subject of healthcare access. And this group includes Carmen Daniels Jones, who is an executive with community relations, strategic partnerships expertise, and over 20 years of experience in marketing, relationship development, diversity and inclusion, and community engagement.
Also joining us is Susan Mazrui, who is the World Institute on Disability’s Board President, with expertise on public policy issues related to disability, aging, and social justice. Last but not least, we have Deb Dagit, who is a disability consultant and former vice president and chief diversity officer in the pharmaceutical industry. So welcome everyone.
[Ashley Inkumsah]:Yes. I’m so excited to have you all here and I definitely want to give you all an opportunity to each speak to your expertise. And we can start off with Susan, please.
[Susan Mazrui]:Okay. Well, my background goes from a personal experience from the time I was a teenager, all the way through a professional experience working at a large company. And so my experience with healthcare has really been as a patient and as a patient advocate, and as a parent of a child who had complex medical needs.
[Ashley Inkumsah]:Awesome. Thanks for sharing, Susan. How about you, Deb? Let’s hear a little bit more about your experience in healthcare access.
[Deb Dagit]:Well, when I was with the pharmaceutical industry there was a lot of focus on addressing healthcare disparities and a global initiative to address maternal mortality. But on a lived experience level, I was born with a brittle bones condition and have spent a good chunk of time in hospitals and ERs, having had 70 broken bones and 45 major surgeries. And I adopted three children with disabilities and my husband is a person with a disability. And I’m a little person and a wheelchair user and hard of hearing. So that lived experience does inform my thoughts on today’s topic.
[Ashley Inkumsah]:Awesome. Thanks again for sharing. And Carmen, let’s hear from you.
[Carmen Daniels Jones]:So my experience really began at the age of 20 as a result of a car accident when I was a junior in college and became a paraplegic. Immediately, life changed from being 5’10” and running up the steps two at a time to using a wheelchair for my mobility. And things were pretty steady in terms of health and just accessing the community. After many years later, I had my first child who was born with several, what they would call congenital conditions. And he had medical fragility, a very narrow trachea among other things and that G-tube, the whole thing.
So we were really fortunate that he exceeded expectations, but in many ways he was like a Jenga. And so if any one thing was off and one of those pegs came out, everything came tumbling down. And unfortunately, that happened when he passed away at the age of 8, 13 years ago. And then as I’ve aged with my disability, definitely there’s some changes. And it makes you more aware of things I didn’t have to think about 20, 30 years ago, accessing different types of doctors that I didn’t have to a number of years ago. And just being able to try to maintain my independence as long as I can while trying to remain healthy relative to where I am right now.
[Ashley Inkumsah]:Thank you, Carmen. And last but not least, Imani. If you can share a little bit about your experience with healthcare access.
[Imani Barbarin]:Yeah. So I was born with my disability in 1990, the same year the ADA was passed. I have been going to doctors since I was a small child. My mom, when I was little, wanted to delay surgeries to make sure that my body was ready to go through so much trauma. And at 18, 19 my mom handed me my entire medical file and said, “This is on you now.” So ever since that day I’ve been trying to coordinate my own disability care. And for the last three years, I was working professionally in disability advocacy with a protection advocacy agency. And right now I have transitioned to working for myself, doing speaking engagements, talking to the community about disability, and really trying to uplift the voices of disabled people, especially younger disabled people in online spaces.
[Ashley Inkumsah]:Awesome. Thanks so much all of you for sharing all of your experiences in regards to healthcare access. I think we definitely have a really robust panel where you each have unique experiences and different perspectives, and I can’t wait to have this awesome conversation talking about all of your different experiences.
So as we all know, people with disabilities often face discrimination when attempting to access healthcare. And today, we’re going to be discussing some of these access barriers. And as I said, all four of you have experiences with interacting with healthcare systems. Imani, if you could start us off by telling us about some of the barriers that you face in accessing healthcare.
[Imani Barbarin]:Well, I think my real first barrier in accessing healthcare was just transitioning from a young adult to an adult with a disability. When you hit that age 18, your parents really aren’t able to advocate for you in the way that they did when you were a child. And there are a lot of support systems for transitioing adults nowadays.
But when I was growing up, I was under the belief I had to be normalized. I had to go to college and not ask for help. I didn’t know where the clinic was on campus and things like that, didn’t know I had to be setting up all my appointments myself. And luckily, my mom was still able to help me with that. But a lot of it was on me because I was living in a different city.
And it’s really hard. Nobody really teaches a disabled person, other than our parents, how to access healthcare and really make those strides for ourselves. And also setting up goals for ourselves as disabled people. What do our physical goals look like? What do our mental goals look like? What do we want to achieve with our provider partners? Because in reality we are the directors of our own lives, but we aren’t really told that we are. So we’re kind of just going with the emotions. So that was a really difficult period for me.
And then also with the pandemic, I think a lot of systems that were in place. Now, our system is built like a house of cards to begin with. But a lot of things really fell down during the pandemic. Disabled people weren’t able to bring advocates with them. They weren’t able to bring direct support workers with them to the hospital because of COVID numbers and increasing those numbers unnecessarily. People didn’t have access to translators. All different kinds of things just kind of fell apart.
And there was really no incentive for the people outside of the disability community and outside of the healthcare facilitator community to actually say, “We need to actually fund these things and we really need to actually create pathways for disabled people to access care.” So my history in the last two years has been pretty abysmal with accessing healthcare. I was too afraid to go to the hospital. I knew what the crisis standards of care were. I was pouring over them for work, reading how exactly they would not save me if I were in a healthcare emergency.
So I’m trying to get back to my healthcare status and accessing my healthcare. But it’s very difficult and it’s a very shameful place to be in because I really do pride myself on I know things are not going well with this body. But at least I knew what was going on. And that was a sense of pride for me. I knew exactly how my body worked and how I could work with it to where I wanted it to be. And now that is kind of broken down to the point where now it’s difficult trying to get to the doctor, getting over my own dislike of my own actions because of what I was doing to survive.
[Susan Mazrui]:Do you also feel that there was a psychological challenge because you’re dealing with, “If I go to the hospital, am I going to be sick from going? Or if I go, are they going to die here because somebody without a disability or someone whose white would get services first?”
[Imani Barbarin]:Oh, definitely.
[Susan Mazrui]:Yeah, go ahead.
[Imani Barbarin]:Oh, sorry. Definitely. I was definitely afraid. I’m still afraid of going to the doctor.Because a lot of people really showed their true nature. A lot of doctors did. A lot of nurses did. I mean, I was looking at videos early in the pandemic of doctors in PPE, throwing up white supremacist hand symbols on TikTok. That still plays in the back of my mind. If I go to the doctor, am I still going to get adequate care? And now because I’ve waited so long to go to the doctor, a lot of them won’t see me because now I’m a new patient, right?
Doctor reestablish those relationships, I have to reestablish those appointment schedules. And some of them are holding my medication hostage because they’re like, “We have to see you before we can re-prescribe this.” I’m like, “I don’t want to see you. I don’t want to be in a healthcare facility right now.” And there’s also the fact that there’s a lot of denial with COVID. And some doctors aren’t wearing masks anymore. Some nurses aren’t wearing masks anymore. So it’s all around. It’s constantly being gaslit and then feeling like you’re losing your mind every single time you interact with the healthcare system nowadays.
[Carmen Daniels Jones]:I can’t imagine. I mean, you’re someone who’s educated and you now how to advocate for yourself. I can’t imagine what the outcome would be for someone who did not know.
[Imani Barbarin]:Oh, absolutely. It terrifies me.
[Susan Mazrui]:And if we have this many problems when we’ve all been through the systems and kind of know how they work, how hard is it for someone who doesn’t understand that often things are denied in insurance because they do that the first time, or that you can advocate back. And then how many people are too sick to be able to advocate or to seek out the help they need?
[Carmen Daniels Jones]:I can share last summer 2021. I didn’t share this at the beginning. I was diagnosed with breast cancer in early 2021. Went through the dreadful chemo. It caused some additional side effects in my body to include pressure sores, which no one saw coming. To the point where the pressure sores became infected, I became septic, get me to the hospital before my kidneys shut down. It became very dramatic.
And I looked really sick. I had no hair. I was a Black woman in a wheelchair. And I’m in the south, I’m in Georgia. And I knew after a couple interactions with doctors, that because of how I presented without opening my mouth, they were putting me in a box. They were telling me this is what must happen, “We get, Ms. Jones, we feel that amputation is your only option.” And they were looking at all these things.
And once I started to open my mouth and advocate for myself and I said, “No, no, no, no, no, we’re not doing that. We are not doing that.” I said, “This is my life and my body.” And I said, “To the extent that I can have parts intact. Don’t you assume just because I don’t use my legs, I don’t want them.” And once I set that tone with them, they began to back off and then thank God an infectious disease doctor came and she has done God’s work. I mean, it has changed the scene.
But if I had listened to them, one of the nurses did say, I mean, a doctor said, “So, what do you use your legs for?” Which was highly offensive. And I said, “Well, they’re part of my body. They help balance me when I transfer and I want them to remain a part of my body.” I don’t want to have to contend with potentially falling or things like that, relearning my balance. And I hate to say it this way, but I’ll say it. I had a kind of southern 60 something year old, good old boy type of doctor and he kept pushing back on me and I had to push back on him. I said, “This is my decision, not yours.”
And so again, the way I presented, I looked really sick, I had no hair. I probably look kind of very disheveled. I joked homeless. I didn’t look great. And I’m not speaking disparagingly of people who are homeless, but I did not look myself. And I had to course correct that whole scenario. And I’m grateful for all the years of working with my peers and then independent living to have the skill to be able to do that because the outcome would’ve been very different.
[Susan Mazrui]:Yeah, there’s the challenge of trying to dress nice enough so they listen to you, but looking like you really feel so they know that you’re really sick.
[Carmen Daniels Jones]:It is.
[Deb Dagit]:Great point. I was thinking the same thing. I went through a period of time during COVID where due to my small size, a surgery on my gastrointestinal system that was done robotically, which it’s supposed to be better, went marvelously awry and they kind of tore things up. And I ended up getting bowel obstructions as a result of all the scar tissue.
And talk about not looking good. When you are in a ridiculous amount of pain and not able to keep anything down, it’s very hard to advocate. And then on top of that, as a little person, I had the challenge of most of the things that they were trying to do to help me. They were using the wrong size, everything from the IV needle to anything else you might name, and the wrong dosage. And the interesting part of that is that because I’ve been in the hospital so much, I can take an amazing amount of pain medication without a doing anything, which makes me look like I’m there because I am a drug addict. But I overreact to other things like certain antibiotics and stuff like that.
So yeah. And with COVID, as others have said, not being able to have my husband there to advocate on my behalf while I’m not feeling well. It is very challenging. And I also learned something that I wanted to bring up as part of this conversation, which is that we were living in a very rural community. And regional hospitals and rural communities can be doubly deadly because there can be a lack of people who are good at dealing with run-of-the-mill stuff versus anything that is unusual. And an unwillingness to accept the patient as not only an expert on their own body, but someone that they should listen to.
So yeah, I’ve learned that even if it’s going to take a lot of effort getting to a major metropolitan area with specialists and starting out with advocating to see the most knowledgeable person in the facility becomes the only way to survive a healthcare emergency.
[Susan Mazrui]:In this summer I had COVID and I was traveling for work. I couldn’t get Paxlovid even though I have MS, I’ve had cancer, I’m diabetic. I meet all the criteria. But it was because my doctor, the system she’s in, would not allow her to prescribe across state lines.
[Deb Dagit]:Wow.
[Susan Mazrui]:And so when I was having a fever of over 103, they were expecting me to be able to go onto websites, which weren’t accessible, and advocate to get in. And of course at that point I was too sick to do web searches and then hire someone else to look at the websites because the websites aren’t accessible, and then to figure out all the issues that went with it. And I think that there’s so many barriers to basic information, and then you add things like required transportation. If I owe a wheelchair user, good luck to getting a ride to any healthcare facility. And basically, if you’re too sick to advocate and there’s no one else for you, you may just die.
[Moya Shpuntoff]:Mm-hmm. I think non-disabled people have this idea that you can really trust doctors, you can really trust the healthcare system and that they’re going to take care of you and they’re going to know what to do. And even just hearing this group’s experiences, it’s so clear that that’s not really what’s happening. And there’s so much that you have to take on personally because no one else is going to do that.
[Susan Mazrui]:And if you’ve had a bad experience because of disability or because of gender or color or anything else, every time you go back you have this incredible stress going in thinking… I mean, how many people without disabilities, how many people of color, how many people who are trans have had to say to their doctor, “You work for me. I’m going to have to fire you.” And that’s great if you have tons of doctors to choose from. But if you’re in a rural area, if you have a very narrow area of specialty, it can be really tough. And you have to sometimes just say, “Okay, I’m going to deal with this person who’s an incredibly ableist person because I know that medically they’re competent.”
I had a urologist tell me when my child was three years old, and this is a man who had children, “She must be a big help of you around the house.” It’s like, how many people have been around a three year old think there are any help to anyone? Maybe sharing the dog kibble with a dog. But nope, not so much. But he was a very good pediatric urologist.
[Carmen Daniels Jones]:You kind of swallow it on one hand and just…
[Susan Mazrui]:Yep. And when they hand you the pieces of paper and you can’t read them because you’re blind like me, you say, “I better get somebody to read it because you can’t afford to offend this doctor who’s taking care of your child or taking care of you in a specialty.” Because yes, legally you can probably fight them. But A, do you have the energy? And B, do you want to destroy the relationship because nobody else is forcing compliance?
[Carmen Daniels Jones]:Right.
[Imani Barbarin]:Yeah. And I don’t think medical professionals really understand the amount of crap we just swallow, that we just let slide. And a lot of people have this perception because I’m online a lot and I’m brash and I’m rude online that I’m like that in person. But I really have to weigh the options when I’m in person of who do I actually don’t mind offending and who do I need to actually listen to me, and how do I have to change my own tone to get them to listen?
And I remember saying early in the pandemic that it’s very dangerous what we are saying about healthcare professionals in this moment. It’s very dangerous to call them heroes and to over inflate their authority during a crisis because it leads people to believe that they’re infallible. And it leads them to believe that they themselves in a lot of cases are infallible. And that just harms disabled people down the line. And we’re seeing the ramifications of that now.
So I think that people really need to understand their role in a system that has a lot of issues. And understand that even if you individually don’t think you’re doing A, B, or C, you still have to be constantly mindful of the perceptions in which you operate under.
[Carmen Daniels Jones]:Imani, I gently push back on that because I think at the beginning of the pandemic, it was like an onslaught of uncertainty. Thousands of people dying every week, professionals were burning out, suicides, getting sick. And there was so much that was not… We were all scared to leave our own homes and these people were going out to provide care. So I would say in that season, maybe the first, I don’t know, 6, 8, 9 months, what they did was helpful and it did save lives. I hear the spirit of what you’re saying, but I guess when I think back to how dire it was, I’m grateful that somebody showed up to work and people’s lives were spared.
[Imani Barbarin]:I too am grateful people showed up to work. What I have an issue with is that us as a society, putting them in a position where we’re not actually providing the things that they need, but just appealing to their egos instead. Like they didn’t have PPE but we were saying, “You’re heroes.” You’re heroes with those trash bags over your heads. You’re heroes with these makeshift masks. And then we never stopped that. We didn’t actually really provide the tools that they needed.
We have vaccines, we have PPE now, but we’re still operating under this false idea that this pandemic is over or is less than it is. And keeping this perception that they have all the authority and that they are infallible because we don’t want to actually deal with the things that the system needs to chug along properly. That’s what my sentiment is.
[Carmen Daniels Jones]:Okay, I hear you.
[Imani Barbarin]:Yeah.
[Susan Mazrui]:And I think the ableism is so embedded in the system that it’s dually harmful when you make people out to be heroes because it reinforces that providing access is heroic. So I think we have to be careful with that. And also the amount of authority, it’s your body, it’s you as a human being, you know your condition. And yet your decisions can be overruled because someone who has a degree but may not know anything about the specialty that you’re in is treated with more authority. So I think it’s as much the systems and how that’s reinforced with the individuals.
I mean, it’s a challenge. And the whole hierarchy of medical care and who’s listened to and who’s not. I mean, there are fewer deaths in India in heart surgery not because the equipment is better, but because the system is set up as a team in coronary care. So if there’s a mistake, people are empowered to make a suggestion or to correct it. Where in our country, if you are a nurse in surgery and you know the doctor’s making a mistake, you could lose your job from that.
[Deb Dagit]:That’s a really excellent point, Susan. And there’s also if you’re in a teaching hospital, the fact that your care can be provided by interns and residents and other people who are learning on the job. And if you’re a person who’s an interesting case because you’re not run-off-the-mill, then everyone flocks around you for the learning opportunity and gets to try their hand at whether or not they can accurately figure out what’s going on and what you need. And often there isn’t someone with expertise to intercede if it was a bad idea. And getting out of those situations is very difficult because they invoke the “this is a teaching hospital”, as if you cannot override or appeal that without a huge amount of fuss and becoming someone who gets a label as hard to take care of. So yeah, I’m in agreement with everything that was said.
[Susan Mazrui]:Anytime I go to a hospital, I bring food. If I want to be hospitalized, somebody’s got to bring a box of chocolates because it’s got to make up for the times that I say, “No, that won’t work. I’ve had that medication.” It does…
[Imani Barbarin]:Well, I think about my grandmother a lot. My grandmother is an immigrant to the United States, is an immigrant due to a medical schooling exchange program and basically was a nurse for 40 years. But later in her life she was taking doctors at their word. And because she had this idea in her mind all the time, “The doctors, the authority. The doctors, the authority. The doctors, the authority.” Come to find out the entire time they had been prescripting her conflicting medications. They were making her sicker and she never questioned it. And she’s a nurse.
She has the medical knowledge, she has the wherewithal. I mean, she’s a spitfire. Like she’s rude as hell. So the idea that she can get in front of a nurse and lose all of that because she has been conditioned to believe that they’re always the authority, that’s what worries me. That’s what worries me about it. And because it is an appeal to the ego, they go along with it too. So that’s what I worry about is people not questioning things because they’re told that people are infallible. That’s my greatest issue.
[Susan Mazrui]:I had a friend in the hospital I visited and she was an incredible advocate, a very strong Black woman. She said before she retired she found out she had a terminal illness, she was going to put together a list of people to get first. Tough person. In the hospital, it was like she was a completely different person. And it was survival. This is how she learned to survive in this environment and how much the experience she had in the hospital was different from a white patient. I mean, what could she say? When you’re being treated completely different, your behavior is going to be different in a way you hope will make you survive better. It’s hard.
[Carmen Daniels Jones]:I know we need to cover a lot of ground, but I’ll bring this up. This past memorial day, my very healthy 82 year old father had some difficulty breathing after playing golf. Golf or tennis. So much so he went to the emergency room and they said, “Oh, we see some clots.” He spent the night, they gave him some Eliquis and sent him home without a treatment plan. He’s in Florida. Not in a huge city so there’s not access to a big network of providers.
And my brother went down, he said, “Something’s not right.” He went down and the doctors were telling us things were progressing, he had clots on his heart and lungs, we don’t know where they came from. And he was just laboring to breathe. And this is a man in two, three days before was active and outside. So our cousin’s a physician, he said, “We don’t want to move to the ventilator.” That we just don’t want to go there.
My dad came home, he had to go back to the emergency room. They basically said that we’ve done all we can do. And my brother intervened and got my dad to Emory in Atlanta. They airlifted him, arrived at 5:00 in the morning. By 2:00 he had the procedure on a Tuesday and he was discharged that Friday. I say that to say, my mother kept saying, “Thank God they made a way for an 82 year old Black man to be able to get the care he needed.” Because a child, they would airlift probably. A teenager, young adult, definitely.
But when you’re that mature in age, we were very nervous that he would get rejected and he wasn’t. And as recently as two weeks ago, he got a clean bill of health and the doctor said, “Get back out on the tennis court and get back out and play golf.” And we’re very, very grateful. But if my brother hadn’t intervened and been an advocate, we would definitely have a different outcome. And I don’t know if it was being in a larger city that made a difference. I don’t know if it was all my brother advocating that made the difference, but a difference was made because we weren’t being heard where we were.
[Moya Shpuntoff]:Yeah. I think that really speaks to just how high stakes these issues are. It’s not sustainable for anyone to… Even in this story with a happy ending of your father is healthy. Just one change in how it was handled could have been deadly. And I think that the high stakes for healthcare, especially for people with disabilities, are really wide reaching.
Recently, we published a blog post about how expensive it is to be disabled, and the costs of assistive technology, mobility aids. Often these things aren’t covered by health insurance and we have to pay out of pocket to manage our health and to get what we need. I would love to hear all of your thoughts on how the healthcare industry should prioritize making these things financially accessible, as well as the costs that you cover as a disabled person managing your own health.
[Susan Mazrui]:I think the costs of trying to stay alive is disproportionally high for a person with disability. I mean, you pay to try to get something like an accessible monitor or something like that. You often have to go through two or three different models and they’re not covered because they only cover a specific model, and then you have to argue it. And you may not have the time to argue it because it might be time sensitive.
So what do you do? You tend to buy it out of pocket and maybe try to argue it, or you don’t have the energy to do that. The amount of time I’ve had to hire readers or work with a service. I work with a service called Aira, which has a live person who can actually read my COVID test and tell me if there are two lines or not. Things like that happen all the time.
Actually, my husband actually had to work with the NFB and approach a healthcare insurance company, which is actually one of the better ones, to just get information accessible and to get the tools that they’re offering to all the other folks that are there to improve your overall health accessible to someone who can’t see. Even though the devices are out there, even though the technology’s out there, even though the laws are out there. And that’s a huge burden.
My daughter works with clients. The folks did not provide an interpreter, it was the deaf client. And an older woman had to bring in her son to a gynecological exam to get care. And this was a big city, so it’s not like there was no resources out there. It’s absurd the amount of work it takes to just try to get basic service that’s provided everyone else, even though the laws say it.
[Imani Barbarin]:Yeah, I think there was a study done a few years ago that said that about that disabled people pay about 28% more to experience the exact same quality of life. And I think that one of the most devastating things is that we could be so much further along. It drives me up the wall every single time I think about it. We have not invested in home and community based services. We consider accessibility to be a luxury and we build it as such.
When we talk about things like food delivery, hot meals, making sure the disabled people have access to transportation. And even just life, just going out, just being out, it costs more money. And if we were really worth our salt when it comes to public health, when it comes to inclusion, we would be thinking about all of these things as public utilities that we’re subsidized by the government and the disabled people could pay a low to no cost to utilize. But we’re not there.
And we sit there and we act like disabled people are asking for too much when we’re paying out the nose for things. I pay for my mobility aids mostly because I’m a heavier person, so I grow through my crutches much faster. I don’t have the time to go through an insurance request form and all these different things to get my crutches, I go on Amazon. I pay 50 bucks for them and I’m done even though they could be free through my insurance. I think about transportation, people taking Ubers to and from everywhere because they don’t have reliable public transportation. We have made our entire society rely on cars and do not have buses and train systems that people can access. We don’t have access to the public sphere.
[Susan Mazrui]:Are they accessible and can your help deal with being amongst people? So if you’re going in for regular chemo or radiation. And radiation, you go in everyday sometimes. That’s my experience with that. That’s transportation. You either go on a bus and you get exposed to whatever else people have and you have fatigue and then you can’t work because you have additional fatigue, or you pay the cost of the Uber if you can do it. And they have that service.
[Imani Barbarin]:Yeah. And what bothers me the most is that there’s this idea that disabled people’s lives are only about our health, and us accessing our healthcare and accessing our appointments. But we want access to life. The entire point of us wanting to live is to have access to life. And if we don’t have access to good things that help us live, then we can’t access life. And a lot of the ways in which we talk about disability is informed in the ways in which we interact with our healthcare.
We talk about all the stereotypes. If you think about stereotypes regarding race, gender, sexuality, you’ll find a disability pinpoint that’s like, “Oh, okay, that makes sense.” The welfare queen stereotype about Black women being lazy and just wanting access to benefits and having more kids. They literally tell you, social security will tell you to have more kids. If you need more access to food stamps and housing records, they’ll tell you to have more kids. That’s not a stereotype that was created organically through what people saw. People were being told that.
When we talk about people who are just wanting to rest off of taxpayer money, you can’t access benefits over a certain amount of money. So you’re not working, you can’t work. So when we think about marginalization, when we think about the ways in which we are taught to think about the other people who are other from this straight white able-bodied society, you will find disability stories wrapped up there so intricately. But we cannot separate racism from ableism. And so when we talk about access, we are talking about who deserves that access to life and life itself.
[Susan Mazrui]:And if you want to work, when you develop a chronic or life threatening illness, many companies will tell you, “This is how you can go on disability and leave so we don’t have to deal with it.” As opposed to, “Here are the accommodations that could be made where you can continue working.” Work from home was one. Frequently people were denied work from home. Right now, I don’t think most companies would have a very hard time depending on the role to be able to say you can’t work from home. But that was something that people with disabilities ask for years and were told it was impossible.
[Imani Barbarin]:Yeah, exactly. And all those things became as accessible as possible as soon as non-disabled people. And I will never not be bitter about that. But yeah, that’s what we pay for. That’s what disabled people are paying for, that extra access just to live.
[Susan Mazrui]:And I worked for a company that actually did a lot so people could work from home. And I have to say, it benefited everybody when everyone had to work from home because it was already out there and accessible. They’d figured out many of the problems.
[Imani Barbarin]:Exactly. Yeah. So that’s I think we could be doing better and we’ve made a lot of false promises in terms of home community services and really funding the services that disable people need to survive.
[Ashley Inkumsah]:Yeah. And Imani, I think you said it perfectly when you said that, “You can’t separate racism from ableism.” And I think that’s a perfect segue to our next question. How do you feel that medical racism impacts the accessibility of healthcare?
[Imani Barbarin]:I think that medical racism… How do I put this? When I think about the way that our medical system is designed, it is designed to eradicate the least of us. And I don’t mean people who are less than… I mean, the people who society deems is not worthy of being a part of society. And so when we look at the ways in which there’s so many healthcare hurdles. When we don’t have universal healthcare, when we don’t have things that are subsidized to get people to and from doctor’s appointments to allow them to be able to live in their homes permanently, that’s by design.
And I know that I’m probably talking to healthcare workers and I know that I’m probably talking to people who work in a healthcare system. You are a part of a system that is designed this way. So what are you doing? So what are you doing to make sure that the lives of your patients who are marginalized are easier? How are you advocating outside of work? I know people work long hours. I know that people are tired at the end of the day. But if you were to be a part of the system, you have to use your position of privilege within the system to change it, because we can’t afford to go along the trajectory that we are.
The medical system is a perfect tool for racism. Because every single road leads to disability in this country, every single road leads to marginalization on the access of disability. And so when we think about our doctors, we’re not just thinking about people who are diagnosing us, who are treating us. We’re thinking about people who have the ability to impact every single aspect to our personhood once we leave that hospital, once we leave that physician’s room. Do you know as a medical professional you could dictate whether a person with a disability can vote or not?
You can dictate where they live. You can dictate whether they’re allowed to manage their own finances, whether they’re allowed to have accessibility at home, whether they’re allowed to have access to transportation. People wield an ungodly amount of power in the lives of disabled people when they have MD or RN behind their name. And I just want, even the most basic of things, for people to understand that that power exists within them.
And one, to abuse it, to not neglect it, but to actually utilize it in such a way that changes the way we experience our medical system fundamentally. And we have the power to do that. We have the power to build a system that is inclusive of disabled people, that is inclusive of our needs. And I want you to think about that every single time you’re before a patient who is Black or who is indigenous, who is a person of color, you have to think about that intently. And I know it takes a lot more brain power, it takes a lot more emotional labor, but it will save people’s lives. And I-
[Susan Mazrui]:I think that doctors that really care, and I’ve had some really great ones, have to spend so much time arguing with insurance companies or their own administration because they’ve taken the time to or had the personal experience to address many of these issues. I think part of the issue though is there’re not enough people of color, there’re not enough people with disabilities who are in the medical field making decisions. And so you don’t have people adequately represented as part of the team as opposed to being the recipient of a service.
And while we all think as a person with a disability or with chronic healthcare issues or whatever, have the right and should be the focal part of that team, the reality is there’s no one who looks like us who are considered part of the team. And that’s part of the issue overall, and as a society, we need to address. I mean, we have technologies that are designed measuring things based on the fact that you’re assumed to have lighter color skin. We have presumptions that are made based on medical models that the data sets were men.
I mean, it’s not… Or older or younger or whatever we need. It’s not there. I mean, the people who are really good. And there are a lot of good people. You’re still dealing with a system that is not utilizing them in terms of their profession as a healthcare provider and are forcing them to become advocates. And that’s tough.
[Deb Dagit]:The irony is we talk in the disability community not about us, without us, when we’re talking about so many different aspects of our lives. But to your point, Susan, if you talk to the majority of people with disabilities, the most unsafe place to be ironically is a healthcare setting. I mean, there’s lots of scary things to do as a person with disabilities. You could be on public transportation or accommodations and have things not be accessible, not be welcoming, not be inclusive, not be as stated verbally and online.
But the unique thing about healthcare that it’s so ironic is that that should be the place where you feel safest, where there are people that are supposedly trained to help you with whatever you came to them for. And because, to the point you were making, there aren’t many people with disabilities or at least people who have an apparent disability or one that they openly own and are willing to talk about. And it’s so stigmatized to be a healthcare provider with a disability that you don’t have that information getting into the system and the support that the healthcare professionals need to advocate on your behalf if they’re so inclined.
And then to the points that were made before, they’re the intersections of other marginalized communities that when you layer those on top of ableism, make it even that much harder. So I do think if we were going to stack rank in priority, what needs to be addressed in our society first for people with disability is to be safe and included and live a good quality of life. I would have to put healthcare at the very top of the list. And I would start, just like if I were working on any other system, getting more people with intersectional identities inclusive of disability into decision making, leadership authority roles, and the ability to influence systemic change.
[Imani Barbarin]:I would also have to push back just a little bit. I think that there’s an overreliance on this idea that representation is going to change things fundamentally. I look at people like Greg Abbott and Madison Cawthorn and people like that who are technically representation, but have done everything in their power to cut off access for disabled people and marginalized people.
I do agree with you that more disabled people need to be in positions of power. But I would hesitate to say that that’s the end all be all, to your point when you said that there’s a lot of people dealing with stigma and internalized ableism. There are a lot of people who, out of that internalized ableism, look to be the example within the system and by putting other people down, and by propping themselves up and being the example of a good disabled person.And so we need to be really careful about the way we talk about how representation is meant to impact our community and really get the right people in positions of power. The people who are invested in community, and the people who are invested in equity and care for marginalized people within the disability community as well.
[Carmen Daniels Jones]:Well, I mean, there is privilege in that. So ideologically, I wouldn’t lean on someone like Greg Abbott. But identify people that we know who are respected, have the advocate muscle, and can also represent a perspective that isn’t typically at the table. So I would never say Greg Abbott would be the representative for the disability community.
[Susan Mazrui]:I think having patient advocates heard is also a critical piece because then you look at the holistic issue around disability, racism, and ableism and healthcare. There’s so many issues of, well, why don’t you eat right? Well, if you live in a food desert and you don’t have a car. Or why aren’t you coming to appointments? And the appointments are always between 9:00 and 5:00, and you have a job that will not let you leave between 9:00 and 5:00. People don’t get that feedback unless the organizations look to patient advocates and really make decisions based on it.
In products, we look at human-centered design, redesign a product based on the needs of the user. We need to do more of that in terms of medicine, because medicine is not just getting drugs in a hospital or having an operation. It’s the whole system of healthcare from access to food and access to transportation, to access to treatment, to access to information about options and respect for the person who is the patient being the lead on the team.
[Moya Shpuntoff]:Something, Deb, that you had said earlier when we were through planning this discussion. You talked about how… Because we’re talking about getting the right people into the right jobs to actually be able to help people. But people with disabilities face some very healthcare related barriers in terms of making advancements in careers and getting to where we’re saying they need to be. Can you talk a little bit more about that?
[Deb Dagit]:Sure. So yes, it is a problem that once you get into a job where you’re getting healthcare benefits and you’ve created relationships with providers that are providing quality care and know you as a person, then that is so hard to obtain and so valued that an opportunity to take a different role becomes something that you have to prioritize your health over being able to contribute in a bigger or different way or in a different industry where you’d have to start all over again. Or you might not have the same access to quality healthcare. Or if you’re a person who’s relied on state or other benefits through a government entity, you could be offered the greatest job in the world.
You could be a vice president in charge of making really important, helpful decisions for the disability community. But if you’re not going to have the access to the healthcare you need to stay alive, then how is that going to work? And we have made it an impossible choice. And too often I see this quiet quitting and the great resignation and all of that when people with disabilities have for decades been stuck in whatever job allowed them not only to take care of themselves but their families.
I adopted three children with disabilities, my husband has a disability. And it’s not just me. I have to make decisions around dependent care and the quality and appropriateness of that care. So I think we really need to revisit access to healthcare and how that’s affecting the ability to tap into this talent pool we keep talking about that’s going to help with all the gaps we have in our ability to fill critical jobs. I think a big piece of the puzzle is that we need to make it easier for people to get the benefits that they need in addition to having the skills match and the passion and the desire to passionately contribute.
[Ashley Inkumsah]:And I think also that the systems of fatphobia and anti-fatness, I think we would be remiss if we didn’t talk about how that also feeds into the medical racism that people with disabilities experience. So I want to ask you, Imani, because I know you’ve done so much extensive work in this realm. How do you feel that anti-fat bias feeds into this medical racism that people with disabilities face?
[Imani Barbarin]:Well, I think a lot of our ideas around bodies and what healthy bodies look like are centered around white bodies. The BMI standard was done on white men, and so they never really counted for Black folks who have a lot of times venture muscle mass, curb your bodies. And so whenever you go to a doctor’s office, as a fat person, they just want to attribute everything you’re experiencing to being fat.
I remember I had a really persistent cough when I was younger. And I wasn’t as fat as I am now, but I was pretty chunky and the doctors said “well lose weight.” Turns out I had a walking pneumonia. I didn’t really want to check for it, which could have killed me technically. And so on the flip side of that, what you have is a society that believes that your health can be seen on you as somebody whose fat.
And so that leaves out people who have invisible disabilities or invisible illnesses. Especially if they’re Black or round, the medical professionals like to wait until they see something other than fatness going on in order to diagnose you. And so it’s a very dangerous perception to have. And the body positivity movement really was created around access to healthcare, access to spaces. And we kind of just dribbled it down into, well, we just feel good about our bodies and clothes fits us now.
No, it wasn’t just about that. It was about having an understanding of how fatness and how the perception of being fat interferes with your ability to get care and the ability to get services. So I think that people need to really undo their biases with that. Especially when it intersects with disability, you realize that a lot of disabled people are fat and that’s okay.
A lot of disabled people are fat, not just because of medications, thyroid issues, but just for being sitting down a lot. Or if you’re in a wheelchair, you’re not doing a lot of movement. It’s just a natural part of being disabled. And so it’s really dangerous to not confront fat biases and to not understand how our society is built around those biases, particularly because of racism.
[Susan Mazrui]:Doctors also rely on exercise more, and there’s some health conditions that are actually harmed by it. And so when you have a health condition that we don’t have the known diagnoses, and especially if it’s women or people of color who are disproportionately having the issues, often they’re mistreated for years until they find the underlying cause. And there’s no reason for that. It makes no sense.
[Imani Barbarin]:And especially in a world where social media exists and people are being harassed and death threats, being a fat person eating, there’s something a bit deeper going on that just people don’t like fat people. There’s something systemic that we are not addressing because it is inconvenient for us to have to do so.
[Moya Shpuntoff]:And I think in this conversation we’ve talked a lot about, yes, interactions with individuals make a big difference, but ultimately these are really structural systemic issues. So that takes us to our last question, which is, what structural changes would make a significant difference for you? What would really change all of this?
[Imani Barbarin]:I would say that investing fully in home and community-based services and really understanding holistically what disabled people’s lives look like, how does transportation matter, how does getting food matter, how does being in community matter, and facilitating the ability to partake in all of those things to the advancement of our health and our access to healthcare.
And I think that there’s, like I said before, a lot of broken promises on behalf of our government when it comes to care for the disabled and protecting and advocating for disabled people ever since the Geraldo Rivera report that’s spurred the protection advocacy network. And they do excellent work, but they need more money. They’re always going to need more money. They’re always going to need more resources.
We have a population of disabled people that represents 26% of the population, and resources are spread thin especially since the pandemic. We are at crisis levels in terms of caregivers, in terms of special education. Literally every single aspect of disabled people’s lives is hanging on by a thread. And so what I would like to see is immediate, immediate investment in services for disabled people at every level of our lives.
[Deb Dagit]:I’d like to see primary care physicians specialties that specialize in helping people with disabilities and helping them navigate the healthcare system. People who take that curiosity about the rare conditions and turn it into the ability to be a cross specialty advocate to deal with people who have a disability who are also aging, and to help people who are in a rural community and need access to both traditional healthcare as well as integrated health like massage or acupuncture or other things that can help somebody to have a better quality of life.
And quite frankly, if I were an MD, that sounds like a really interesting specialty. I’m going to be a primary care physician for people who are medically complex and help them navigate the system. Wouldn’t that be more interesting than just doing everything run-of-the-mill all day long every day? So I think it’s a win-win. Susan?
[Susan Mazrui]:I’d like to see patient-centered design healthcare systems, which are looking also holistically, but looking at the play of poverty and racism as well. So I would like to see that change. I’d also like to see that healthcare is not tied to employment because what happens is you will work longer to maintain the healthcare that you need. And then when you really need it, you can’t work.
And so you go into a new system and you’re supposed to advocate during those systems. So if we could get it more healthcare is designed around the patient, all the way from health and wellbeing through all specialties so that we’re looking at things holistically as a society to repair that and also just not tie that funding with employment and access to healthcare with employment.
[Moya Shpuntoff]:Thank you so much to our panelists and to y’all at home for joining us today for our episode of The Adjustable Table. You can find transcripts for the episode in the description box down below. And please join us for our next episode. Thank you everyone again.
[Voiceover]:Thank you to panelists Deborah Dagit, Susan Mazrui, Carmen Daniels Jones, and Imani Barbarin. Moderators Ashley Inkumsah and Moya Shpuntoff. Producers Ashley Inkumsah and Moya Shpuntoff. Editing, Ashley Inkumsah. Special thanks to Collective Speakers, Carrie Griffin Basas, Janni Lehrer-Stein, Karen Tamley, Kathy Martinez, Katherine Seelman, Marcie Roth, Megan Mauney, Megan Kennedy, Sarah Helm, Sarah Pashe, Sevana Massih, Susan Sygall, Tali Bray, Michelle Lantini, and Reggie Johnson.
Thank you to Wells Fargo for your generous support of the series and your longstanding partnership with WID.
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