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Episode 9: It's a Love-Hate Relationship

Wednesday, March 17, 2021

GUEST: Molly Bloom, PhD, Inclusive Design Researcher, Adobe

I’m thrilled to have my very dear friend and colleague, Dr. Molly Bloom, back on the show to explore our relationships with medical providers, in the context of inaccessible structures. How do we, even momentarily, balance the power differential? Our medical records impact our ability to receive services, so why aren't they easily accessible and amendable? When immune compromised people are dying of COVID at the same rate as those aged 75+, why are we deprioritized? If getting the best care comes only because we've advocated for ourselves, have we made advocacy the thing that determines our best care? We are pondering these questions and more this week, so don't miss out!

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OUR GUEST: Molly J Bloom, PhD

Photo: Molly Bloom

Molly has felt an affinity for and responsibility to the disability community since sustaining a life-changing injury as a teenager in 2006. Since then, she has co-founded the only women’s wheelchair basketball team in California, completed a PhD drawing on anthropology and disability studies, and learned from her friends and peers that disability community always involves sharing knowledge, advocacy, and living joyfully. In her doctoral studies at UCLA, Molly brought together critical perspectives on race, class, and disability community.

Her research, funded by the National Science Foundation among other organizations, was recognized for its commitment to diversity when she was inducted into the Edward A. Bouchet Honor Society in 2018. She has authored publications on topics ranging from adaptive athletics, to disability in the Middle East, to Brazilian Sign Language. Recently, Molly has relocated to home of the American Disability Rights Movement, the Bay Area, where she is busy working as an Inclusive Design Researcher for Adobe and soaking in the activist milieu. She thrives on connection and collective growth and longs for the day when she can build joy in-person with her disabled kin.

TRANSCRIPT

Sarah Kirwan

Hi and welcome to Incluse This! I’m your host, Sarah Kirwan, and this is a movement for disability equity.

Sarah Kirwan

Today, we’re talking with Dr. Molly Bloom, and we’re talking about the love-hate relationships we have, including those relationships with our medical providers.

Sarah Kirwan

Molly has felt an affinity for and responsibility to the disability community since sustaining a life-changing injury as a teenager in 2006. Since then, she has co-founded the only women’s wheelchair basketball team in California, completed a PhD drawing on anthropology and disability studies, and learned from her friends and peers that disability community always involves sharing knowledge, advocacy, and living joyfully. In her doctoral studies at UCLA, Molly brought together critical perspectives on race, class, and disability community.

Sarah Kirwan

Her research, funded by the National Science Foundation among other organizations, was recognized for its commitment to diversity when she was inducted into the Edward A. Bouchet Honor Society in 2018. She has authored publications on topics ranging from adaptive athletics, to disability in the Middle East, to Brazilian Sign Language. Recently, Molly has relocated to home of the American Disability Rights Movement, the Bay Area, where she is busy working as an Inclusive Design Researcher for Adobe and soaking in the activist milieu. She thrives on connection and collective growth and longs for the day when she can build joy in-person with her disabled kin.

Sarah Kirwan

We’re more than halfway through this season. And I’m so thrilled to invite my very dear friend and colleague Dr. Molly Bloom back to the podcast today to talk with us about this very layered relationship we have with the inaccessible structures we live within.

Sarah Kirwan

I am like super happy for us to be back here today to have this conversation. I woke up this morning angry and agitated, and started my day with the news, which is never really a good thing at 6:30 in the morning on a Saturday. However, I started off going through Twitter and I was reading some of the messaging around the vaccine rollout. I just think that as we're going to launch into this conversation around, it's a love, hate relationship. Although it was intentionally set up to be a conversation just specifically about provider and patient relationships. There's a lot of love, hate relationships going on right now for people within the disability community.

Sarah Kirwan

And to touch on that, a little bit, on March 15th in the state of California, people with auto-immune issues, weakened immune systems, they will be able get the vaccine starting on Monday in California. And a friend wrote me a text message. She said, I just wanted to give you a heads up. There was, this was very sweet that she did. I want to give you a heads up that on Monday, you can start enrolling to get your vaccine shots. It just set me off on this whole tangent about ableism. Also, I saw, a tweet this morning about people getting backlash from the community because they got their vaccine. They have a weakened immune system or auto immune compromised got their vaccine before so-and-so having to prove that you actually deserve or are worthy of getting your vaccine even on Monday in California, when we're able to be able to get the vaccine, we have to actually show a doctor's note.

Sarah Kirwan

So, there's kind of a love, hate relationship going on with a lot of things in our lives right now. What are your thoughts on that?

Molly Bloom

Yeah, I similarly share a lot of frustration with the vaccine rollout and the one thing that frustrates me, the one thing that is the most pertinent for me at the moment is the fact that people with a disability or health conditions that make them at higher risk of having a really severe, experience with COVID or dying of COVID have been not prioritized earlier. The data that I've seen suggests that people who do have underlying health conditions that puts you at higher risk, such as, auto immune disease or some types of disabilities. Those folks are dying at equally high rates as people who are 70 and older, if not higher. So, it baffles me why this hasn't been, an earlier priority for the States. I don't have any other way of understanding it except to think of the state's logic. And I know California, this is, and when I say the state, I'm talking about California, because that's where I'm most familiar with the vaccine rollout.

Molly Bloom

But essentially it says to me that the state's logic is well, people who are disabled or ill, it just makes sense for them to have to stay at home. It just makes sense for them to be de prioritized, compared to other groups of people. And, I think there's a really troubling logic about that. So, I've spent many hours very pissed about the vaccine rollout. As many people are…

Sarah Kirwan

As many people are. I, I, I think this whole thing goes back again to the ablest messaging. Let's just keep disabled people inside. What, if you're vulnerable, just don't go out. And the other community, the larger community is somehow okay with that. Like that makes sense to them. Okay, you continue to stay in your home because we don't want to prioritize you for this vaccine. And initially, when it was supposed to be rolled out in California, it should have been 75 plus people with underlying health conditions. And that was changed in California. In addition to that, not only that deep prioritization of disabled people, but also back to what you said about death rates being at the same level of 75. Plus that also goes back to the provider patient relationship because providers are the ones making the decisions in devaluing lives, human, disabled, human lives, and not giving them the care that they need because they see their quality of life as much lower than we would say our quality of life is.

Molly Bloom

Yeah. And there's probably some providers who are doing a really excellent job to advocate for their patients. The problem for me is that they have so much power to make that determination when the entire field of medicine, okay. That is way overgeneralizing, but parts of the field of medicine, as we know it in the U S are driven by the logic that disability should not exist and the best way to, have a high value of life is to not have a disability. So, when that, that is the ethos that you're indoctrinated in. You get to make, you have the power to make decisions about people with disabilities. That's really troubling, and that's not even touching this. This is not even touching all of this racial inequities with the vaccine rollout, which, are deeply troubling...

Sarah Kirwan

Deeply troubling.

Molly Bloom

Right? Black and Brown people are dying at such high rates and people who don't have access to, people who don't know how to fight with their providers, or they live in a system in which even if they are really good advocates, they are, their voices are seen as less valuable like that. That is just building…that’s just…

Sarah Kirwan

That’s just wrong.

Molly Bloom

Yeah, that’s just reinvigorating the inequities.

Sarah Kirwan

And I think what you said, it goes back to power. There are so many layers when we look at the relationship between a patient and a provider. Academic-wise, providers, medical providers, aren't taught that social empathetic, caring side. It's more curing. It's more of the body as a specimen. How do I take care of that? Which we need obviously. We rely very much on our providers. We also have a fear of our providers because we are fearful that we won't get what we need from them. I think that historically we've seen, and I can't make that blanket statement either, but we have seen that providers don't always provide the type of care that a patient needs. Some can argue that could be because of electronic health records, not able to spend enough time face-to-face with the patient, demands on time and productivity for the providers. But I think there's a power differential.

Sarah Kirwan

And I believe it's time for us to stop looking at our medical providers as this almost God-like person that's on this pedestal and looking at them as a partner and also looking at them as I'm a customer and consumer, and I'm getting a service from this provider. If I were going to, let's say, red Robin to get a hamburger and I didn't get the best hamburger. Yeah. I'm probably going to send it back. But, with a provider, we have a tendency to not push back or not to challenge what they're saying, because we have fear because they hold power over our care, therefore our lives and our livelihoods and our quality of life. And so, how do we, it's interesting, how do we change that dynamic? Is it education? How do we get people to a point where they can advocate for themselves through that fear? Does that make sense?

Molly Bloom

Yeah, I, I think the answer is that, and I, I, I think I have a different orientation to the value of thinking about patients as clients. I think there's a lot of things that are loaded in that for me, because the answer to getting better care than, is teaching people who are patients, how to advocate for themselves rather than changing the system. So that advocacy does not become the thing that determines your best care. And I don't think that it's up to the patients to have to figure out how to do that, I mean, that's certainly how things get done in the system now. But, I think that, in my incredibly general opinion, right, I think that the field of medicine needs to have deep structural changes. I think that think about this, I'm thinking in particular about people with disabilities, so that disability is seen as a valuable characteristic of a person's life that does not necessarily need to be cured is one part of a human being, that is something that's sort of continually managed in the healthiest way possible.

Molly Bloom

That is my anthropological take, not my policy take.

Sarah Kirwan

Man. That is a tall order. And, I definitely agree with you. I think that in the realm of what can we do, like what's the lowest hanging fruit, right? If we can't change the entire system right now, like what's the lowest hanging fruit. I think that's training for providers on how to interact better or time management or communication skills. One of the issues that I'm thinking about in particular, and this is something that I had shared with you previously, was I went into, I have a new neurologist and I don't think that people who have their health, they have good health and don't rely on doctors all the time may not necessarily understand how scary it is to change providers like to change from one neurologist to another, or to change from one primary care doctor to another, because you have so many multiple layers of your health issues…that that's scary.

Sarah Kirwan

Recently I was sharing with you that I went to my neurologist and she's new, and I was unaware of the time allotment for the appointment. I had no idea that I had a specific agenda for her to cover, but I knew what I was told to bring with me to my follow-up appointment. So, there was a miscommunication on the front end. I went in with notes of what I needed to talk about. I wanted to talk about my migraine medications. I wanted to look at my MRI results. I needed to look at, get fatigue medications. And all of a sudden I was put in the situation where my doctor, my neurologist was rushing me because on her end she's, she has a time crunch. She has 10 to 20 minutes to get through this conversation. I was thinking that I had much longer. And now she has a patient who has a whole notebook of things that she needs signed.

Sarah Kirwan

She needs new prescriptions, all of this, but that's not my fault. Right? And so, I got some news during the appointment. It was the first time I'd actually ever seen my MRI results in 10 years of having Ms, which is for most people with MS is almost unheard of. So, I saw my MRI results and I saw that I had a lot of atrophy around the outside of my brain and she said it was alarming. Basically went on to say that we didn't have enough time to go through all of it. It would have to be, it would wait for the follow-up appointment for me,

Molly Bloom

Oh yeah, that’s great.

Sarah Kirwan

I'm thinking, okay, well, Alzheimer's runs in my family, Lewy body dementia, regular dementia. Is my atrophy associated with my Ms. It associated with, all these other genetic issues that I may have, or be, predisposed to. I left in tears and this is me 10 years into a diagnosis.

Sarah Kirwan

I am white, privileged, educated, English is my first language. I understand the system because I worked in healthcare as a hospital administrator. I could go on and on. And yet I leave in tears from my appointment because I don't feel seen or heard. I ended up, during my February appointment confronting her, but not in a negative way, just saying, I really need to address this. At first she bristled but then once we started having the conversation, she said, I'm sorry. How could I have said that better? And so we talked about that, ended up laughing through the rest of the appointment was a great appointment. I told her, I appreciate you listening to me, thank you. But, I don't know if that's really normal where a patient would actually have that conversation when they're not getting the care that they need,

Molly Bloom

Or that a provider would be receptive to that conversation as well. Right? And I, and I think the reason that was so successful, it goes back to what we’re talking about earlier about the power dynamics within the patient provider relationship, right? As a linguistic anthropologist, you can see it in the language that, providers use with their patients. So use of highly medicalized terminology, right. Carries with it, this sort of authority. There's that the interactions that patients have with providers is just laden with this medical authority that providers bring. Even if they're trying to be approachable, like even if the provider as an individual, is not like this is just how the system structures, these interactions.

Sarah Kirwan

That's a very good point. Yep.

Molly Bloom

When you talk about, the way you were able to engage with her and it felt more human, like what I hear in the dynamics of that is that momentarily, the dynamics shifted so that it felt more egalitarian. Like, you conversations in which you're able to laugh with somebody, this is some like egalitarian relationship that you might have. And, I think moments in which…

Sarah Kirwan

What does egalitarian mean?

Molly Bloom

Equal everybody's equal. Everybody’s on the same footing. Yeah. Sorry, I got to too anthropological.

Sarah Kirwan

I was like, man, do I thought about it for a minute? And I'm like, do I know what that means? Okay. I'm just going to double-check.

Molly Bloom

Okay, great. Awesome. Thanks for double checking. Yeah. I, I was just going to that. I think those moments are incredibly powerful to have those moments with providers in which that hierarchy feels like it dissolves because that is what enables a patient to feel like they are being seen as a whole person. Right? Like you understand me, we're coming from the same perspective here. Both of us are coming from the same perspective. You're you’ve dropped this medical hierarchy that is laden and all the interactions we have, and we can understand each other from the same perspective.

Sarah Kirwan

Yeah. I really liked that. It was very uncomfortable for me, but it felt like the only thing that I could do, because I didn't really want to have to go find another doctor either. When we also, when we think about the provider patient relationship, the control that they have over our medical records, that is one thing that I find very concerning and alarming that patients don't actually know. We don't know really what's in our medical records. We don't know what they're writing. We don't know if they're putting the right information in, if they're putting down everything that we share with them, the same neurologist I had been talking about, being able to hear my internal organs for years. I mean, almost 10 years and nothing in my notes about that. I find that to be just incredible because I had no idea, like, have you ever even seen your medical records?

Molly Bloom

I have seen my medical records, but that was, but I've seen some medical records and it took me 10 years to realize that it might actually be really interesting for me to go through the medical records of my, the accident that caused my amputation. It took me a long time to even think about that.

Sarah Kirwan

Oh, I bet that was really interesting and possibly traumatic.

Molly Bloom

Oh, it was absolutely traumatic. It was, it was pretty intense. This is a little bit of a tangent, but I was trying to figure out if I still had an appendix, I was like, I had this huge abdominal surgery. I couldn't remember if anybody told me that my appendix had been taken out the people who were there with me during, like, who were interacting with my doctors when I was in a medically induced coma were telling me, yeah, I think your appendix was taken out. Another one would say, no, I don't. I don't remember that happening. And,

Sarah Kirwan

Oh my gosh.

Molly Bloom

And I lost track of stuff. I also knew I had this reaction to some really weird, like very rarely used antibiotic. I would, and I thought I remembered the name and I would, whenever I met with a new doctor, I would tell the new doctor, I have this reaction to this antibiotic and if they couldn't find it in their systems.

Molly Bloom

What I had imagined is that there was somebody that I could ask about these records. Like I was like, surely the medical system, like somebody knows these things. There has to be some doctor that knows this about me. It took me a while to realize that actually nobody was going to do that for me. I had to be the one to like comb through my medical records and figure out what it was that I was reacting to. What, and the process of all of the procedures and surgeries I'd had. That was a big shift in my understanding is that these medical records are kept by providers. You, you learn how to do medical records. You learn the things that need to go into them. Those records are not something that any patient, any standard patient thinks I need to have access to those. I need to understand what's in them.

Sarah Kirwan

That goes back to the power dynamic. That really leaves the power with those providers and with the system overall, really, I think about like, where are, where the hell are all my medical records seriously. Like that's the shit that keeps me up at like I would really love to figure out where are all my medical records and can I put them all together so I can see a whole view of my health because I also think the important thing is that if my disease progresses to a certain point and I need to go on SSDI, then I would need those medical records to be correct. That's a lot of times why people don't get don't when disability claims with the federal government is because of their medical records, yet none of us see them or have access to them unless we fight to get that access.

Molly Bloom

Yeah. And, and absolutely it's those medical records are part of what, maintains the power of medicine, right? The medical field is, incredibly like it's incredibly well-funded and it has a lot of control over what people can and can't do it, especially when you come up with another, institution and all of a sudden you have to prove something, right? You have to lean on the authority of the medical system to prove that, for instance, if you have an invisible disability and you are trying to, get whatever accommodation it is that you need or whatever, like you have to lean on that power.

Sarah Kirwan

Molly that goes right back to what I'm experiencing right now. I'm in the middle of a lawsuit. It's regarding the toxic mold that I lived in for two years. It was 2015 when I moved out of the toxic mold. And, I haven't seen any of these medical records. There have been more lawyers that I've seen my medical records than I have. So we are, you're exactly right. We rely this medical system. What, how did you say it?

Molly Bloom

The medical system is incredibly powerful in our society. Right? And, we have to lean on that sometimes when other organizations or other powerful institutions have questions about our health, for which whatever problem they need to solve as relevant, like getting, compensation from insurance or, proving that you're disabled enough to get a disabled parking placard, right.

Sarah Kirwan

Or a vaccine. (laughing)

Molly Bloom

Or a vaccine. Yeah. Yeah.

Sarah Kirwan

There's really nothing to lean on because there's nothing there for us.

Molly Bloom

Yeah, absolutely. I think if there is any discrepancy in that, it is the people who end up suffering, who get caught in this what feels almost like this fight between really powerful institutions, like, the medical institution and other institutions that are full of money. Like insurance companies.

Sarah Kirwan

Like State Farm. (laughing)

Sarah Kirwan

They have Jake from state farm and they have Drake from state farm. I love the commercial and I get so angry because I love the commercial yet. I have to be like, fuck you state farm. But anyway, go on.

Molly Bloom

What I was just going to say is it's the person in the middle who is, it's the individual, that person who is suffering, who feels it, who gets caught in the system, that's much bigger than one individual.

Sarah Kirwan

I find this work to be exhausting. Like I think Charis Hill, when they were on the podcast, said it correctly, like screaming into a avoid just to get someone to listen to you. But no one is.

Molly Bloom

It is an absolutely exhausting experience. And there have been times when I've had to fight in order to advocate for the things that I needed and from medicine. Right. I have, because of my amputation, I've got this really interesting seating system. I don't have, I only have one butt cheek. Okay?

Sarah Kirwan

Okay people? Get over it. (laughing)

Molly Bloom

(laughing) Yeah. Yeah. And when I sit, I’m off-balance. Right? So, I have to make sure I have something to level myself out. And it's very complex thing to have to deal with. I have an idea of what I need and what I would like and what works best for my body. There are times that providers aren't on board with that, or there are times that they just don't get it and they mess it up. And, and I, and this is continual pushback that I have to get what I know that I need in a seating system and a chair.

Molly Bloom

And I get exhausted by the fight, but I am able to sustain that fight because of my privilege. Right. Like I have enough money that I can take a day off work and go, I've just got to call the insurance company and call my seating company and figure this out. And, I …

Sarah Kirwan

And you have the privilege to know how to do that.

Molly Bloom

Right? Yeah. Like I, I had a privilege to have really good physical therapist who also understood what I needed kind of also help advocate for me. Right. So that is a point in which like privilege will absolutely propel people into this fight that nobody should have to do in the first place. If you don't have time to call the insurance company, if you're too tired, if you are just struggling to feed yourself and feed your children who has energy to do that?

Sarah Kirwan

I mean, really people don't, I don't think that people understand how tiresome it is and just, Oh gosh, I don't even know another word. I mean, we keep saying exhausting, but it's more than that. When you spend so much time on the phone fighting for insurance.

Sarah Kirwan

You know, I, I want to read this quote, because I was reading this article today and the title is, do patients expect too much of physicians? and I, so I wonder, like at first I was like, wait, that's not possible. Well, they are human beings too, working within like a very flawed system. So, this quote says the truth of the matter is that a large degree of America's love, hate relationship with doctors is fueled primarily by our idealized notion of what a doctor should be when asked to describe their vision of an ideal doctor. Patients often use words such as empathetic wise, confident, attentive, brilliant, dedicated, and altruistic, but they want trust, friendliness, respect, honesty, timeliness, and sincerity too. That's an awfully high pedestal. These expectations extend to physician's lives and behavior outside the office as well.

Sarah Kirwan

I mean, yeah, I have my thoughts on that. What are your thoughts?

Molly Bloom

I can see, I can see how people have really high expectations from providers, but I feel like that's missing the entire point of the problem in doctor patient relationships to me because, I think what I was trying to get at earlier when I was talking about structure and saying that it's not the individual is like, the medical system just has this inherent authority and providers that are just individuals that are embedded within that system. To me, the problem is not the patients have another reasonable expectations of providers and providers are giving patients what they need.

Molly Bloom

Like they're, these are just two individuals interacting with each other in a system that's already inequitable from the start. Trying to understand which of the individuals that is wrong is just a complete miss. In my, in my understanding, in my view of high look at the medical system. That's also why I think, provider education would be low-hanging fruit. It would be something but provider education does it doesn't change a structure.

Sarah Kirwan

I was reading a study this morning in the Harvard Gazette, and it says that only 40.7% that's four, 0.7% of physicians who were surveyed, obviously feel very confident about their ability to provide the same quality of care to patients with disabilities as their other patients received. This is a huge number, just 56.5 56.5% strongly agreed that they welcomed patients with disabilities into their practices. That's, that's an incredible number.

Molly Bloom

It is considering the number of people that are disabled, which it latest estimates in the U S suggest somewhere between 15 and 20% of the population lives with a disability.

Sarah Kirwan

Yet almost 60% of providers. Don't welcome people with disabilities into their clinic or their practice. What has your experience been in getting care? I mean, just even primary care.

Molly Bloom

That's a shit show to find a provider who I feel like doesn't just want to find like a primary care physician who doesn't just want to send me out to a specialist, because they're so uncomfortable that they can't, they don't think that their deep understanding of medicine and health applies in my case. It feels othering, but I have found a really great primary care physician, but it's hard to find it's really hard to find. Even if a primary care physician sends me out to a specialist, they probably don't know what to do with my amputation. That is a super uncommon amputation and a rather involved amputation in the first place.

Molly Bloom

Yeah, I've learned, I think, I, I think I might now come across as a little scary when I'm meeting a new physician. Cause I'm just like, this is what I need. I need a provider who will provide me this kind of medication. I need you to be able to write this exact prescription. Here's how the prescription works. I think I'm definitely gotten the sense that I was intimidated of a few of my, primary care physicians, which I've had many because I've moved a lot and that sucks. But…

Sarah Kirwan

Well you're just spreading awareness and education, Molly.

Molly Bloom

Yeah. Basically it's a shit show Sarah.

Sarah Kirwan

Let me ask you this, is it really that different than them giving treatment to someone who doesn't have an amputation like you? Is it, I mean, do you feel like you need something different other than the specific medications.

Molly Bloom

Sometimes it is different, but I feel like that the number one, the first instantaneous reaction is to go, Oh, you've got back pain. Okay. All right. We're going to need to, make sure I'm just gonna need to send you to an ortho because you probably have some involved stuff going on.

Sarah Kirwan

It's all of a sudden, much more complicated than just, Oh, you should maybe go see a chiropractor.

Molly Bloom

Or, Oh, you have Phantom pain. Just like go see a pain specialist. I don't want to have to think about your pain or deal with your pain because that is, I don't get it when really pain is pain and some primary care physicians do understand pain. Maybe I do want to see a specialist, but it just like you, Sarah, I just want to be able to reach that decision with the provider, like have a conversation with them instead of just the immediate reaction of send me out. Oh, I don't know. I don't know, Phantom pain. Like I can't deal with that new thing.

Sarah Kirwan

You know, we, you and I talk a lot about shared experiences and that reminds me of like my neurologist, because they're not MS. Specialists. I find that, and I hadn't really thought about this till you were just talking. I find that they will almost like qualify that while I'm not an MS specialist. So, you know, I'm just a neurologist. So, that would be something that we would need to get you to an Ms specialist for, it could be something like which fatigue medications do you want to take.

Molly Bloom

Yeah. And then…

Sarah Kirwan

When I already told you which fatigue medications I take. Why don’t you believe me?

Molly Bloom

Yeah. And then, you have to see a specialist and that takes time and energy and like setting up a whole new relationship, you know?

Sarah Kirwan

Six months later when you actually get in to see someone. Yeah. I mean, and I understand that physicians have to work within this really fucked up structure. I get that and I feel bad. I feel badly for them as well. Like I wouldn't enjoy it. I think it's very capitalistic it's based on productivity. I also feel sad for people with any condition or just people in general who don't get appropriate care. How do we come to some, I don't know, some relationship, because again, it goes back to relationships in my belief, how do we get to some relationship and understanding that we're not at a power differential?

Sarah Kirwan

You're not over me. I want to be a part of my care. I also have empathy for you and I feel sad for you, but I still need to get my care. And so I think that's kind of what happened with my neurologist and me. And I addressed it at the end, I said, thank you for having this conversation with me. I'm sure it was probably kind of uncomfortable, but I said, for me, I need to know that I have that you're going to support me, that you have my back. It really goes back to those relationships. And how do we just…

Molly Bloom

Yeah, Sarah, I think that, just picking up off of what you said, and we can, this can be my sort of wrap up of what I want to see change in the system, which I, I hate answering this question about, medicine when there are a lot of people who have a deep understanding of the healthcare system. But, I think being able to have the experience with the provider in which you get some semblance of feeling like they are understanding you as a whole person and believing you that is enabled in providers who I do not think providers are bad people. I don't think there's a blanket statement, but I think they are just stuck in the system that forces them to spend little time with patients, forces them to orient, to diagnoses and things that are really important and keeps them from being able to see the whole person.

Molly Bloom

I think what needs to change is the way that medicine is funded in the U S in particular, and reducing some of that load that keeps providers from having the energy to orient empathetically to patients.

Sarah Kirwan

Yes. And that sounds really great on paper. (laughing)

Molly Bloom

Yeah. (laughing)

Sarah Kirwan

No, I love it. I think that's a great wrap up and what I want to say, for my wrap-up is that I want to really encourage, and I know it's scary, but I want to encourage people to converse and have conversations through their fear that it is okay for you to question the care that you're receiving. It is okay for you to want to have a provider in your life that is a partner in your care who communicates with you well. I think when we're gentle in our conversations that we are two humans in a relationship and communication is such a big thing. I mean, trust me, I'm the first one to go to a patient advocate, don't get me wrong, but I'm saying, let's try to have some conversations. Is there anything else you want people to take away Molly, or that you would, how to have a better quality of relationship with their provider?

Molly Bloom

I just mirror what you said, Sarah. I mean, it's that, I think that for the patient to have some sense of empathy for the provider could be helpful. It doesn't mean that you're going to get better care or that your expectations are unreasonable. That, you should get what you need out of the healthcare system, but also the problems with patient provider relationships and then disability on top of that disability or illness, are deeply structural. And those are not individual problems. And entering that relationship with that understanding might help, enable the dialogue that does lead to much better care.

Sarah Kirwan

I love that. Enable the dialogue. Open up that safe space. Thank you so much, Molly for being here. We are having our wrap-up for this season very soon. I actually, I have to go back and listen probably to all of the episodes, but there is some great stuff that we're going to be talking about in a couple of weeks. And I'm really thrilled. We'll be having that conversation soon.

Molly Bloom

Me too. Yeah.

Sarah Kirwan

Thank you for having this conversation with me today. I really was, I woke up today, like I said, agitated about vaccines and this was very cathartic. So thank you for being here.

Molly Bloom

Yeah. Thanks for having me.

Sarah Kirwan

And once again to our listeners – thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by Eye Level Communications, LLC, a California-based woman- and disability-owned small business committed to having critical conversations – at eye level – that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website at: www.eyelevel.works You can also email me directly at sarah@eyelevel.works with podcast episode ideas, as well as comments and questions.

Sarah Kirwan

Remember to put your disability lens on when you look at the world, and tune-in next week for another stimulating conversation on Incluse This! – the podcast that’s really a movement. Take care and be well.

 

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