This transcript has been edited for readability.
Erin Storie: Welcome to the Equity+ podcast from Care Share Health Alliance, where we have the hard conversations needed to do the work to advance health equity. We’re so excited to have you here today for our very first episode. In this episode, we’ll introduce Care Share Health Alliance and our team. First you’ll hear from our Executive Director, Weyling White, about who we are as an organization and the work that we do.
Weyling White: Thank you Erin. So, just to give a little bit of our background, Care Share Health Alliance originated out of a collaborative network of partners. These partners were dedicated to connecting the uninsured and underinsured individuals in Buncombe County, North Carolina with donated health care services. This would later expand across North Carolina. In 2008, Care Share Health Alliance was officially established to serve as a statewide resource and technical assistance center to help communities develop their own collaborative networks to improve access to care and the health of low income, uninsured and underserved people. While working with collaborative networks, Care Share Health Alliance began to realize that to truly make an impact to our overall health, we should not only focus just on the clinical care but rather broaden the scope to address additional factors preventing individuals from seeking or receiving healthcare services. So these were termed social drivers of health or social determinants of health as some people call them, of course affects individuals health, such as housing, transportation, access to health insurance, being able to receive healthy foods, fruits and vegetables, education, anything that’s external of the body of the clinical care that impacts one’s health.
Weyling: While addressing the social drivers, particularly with access to health, we started our work in two major ways. In 2014, Care Share Health Alliance established NC Get Covered, which is still going today, that was to help North Carolinians get access to health insurance after the implementation of the Affordable Care Act. And also in 2020, through the North Carolina Collaborative on Medicaid Transformation, which we call NCCOMeT here at Care Share Health Alliance. This program actually supports the implementation of Medicaid Transformation in North Carolina. So, we typically have always lived in an access to care space similar to the Access to Care Network, which was in Buncombe County, and was the TA provider for many donated care networks across North Carolina, including how I got introduced to Care Share Health Alliance. In 2013, I began as the coordinator for Hertford Health Access, which was an Access to Care Network program in Ahoskie, North Carolina. So since then, we’ve pivoted and we’ve changed our scope and sort of rebranded here at Care Share Health Alliance. We still believe in lifting community voice. Our mission is to collaborate for health equity, and through our work of addressing social drivers of health, we became aware of the inequities that are inherent in healthcare systems.
Weyling: These inequities predominantly affect historically marginalized populations, especially BIPOC communities. We recognize that the disparity is due to white supremacy systems; systems that perpetuate structural violence by intentionally leaving out, othering and harming people of color. So through this realization, we decided to actually dive more into equity, getting to the root causes and actually engaging more with communities and bridging that gap between the systems and communities to make sure that we are encouraging and fighting and advocating for system level changes for better health equity and creating opportunities for BIPOC individuals in health care and BIPOC led organizations that are out here in communities addressing social drivers of health . As well as through professional development, capacity building, or just creating connections to help these organizations and communities to thrive.
Weyling: So our strategic priorities are a little bit different than they were on the 2008, and I just want to you know, be thankful for our board of directors, our board chair, that has guided us through this new direction, and I will say our new path and journey Care Share Health Alliance is on. Our new strategic priorities are increasing access to equitable care, disrupting white supremacy, culture, developing connections and networks, and improving capacity and sustainability. So, a lot of our work is continued to be deep rooted in community across North Carolina, moving access to care, we have wonderful equitable care that’s here in North Carolina, we have a strong medical and health presence within our state. So, we’re just happy that we’re able to, you know, make those connections, expand our network and partner with organizations and partners across the state to make sure that we are connecting community members to that equitable health that’s being delivered and being provided within our state.
Erin: When we envisioned this episode, we saw it is not only an introduction to Care Share as an organization, but also as a way to provide a deeper look into our staffs’ own lived experiences and how they affect the work that we do. So, we created a set of questions based around two of our strategic priority areas. Those are: increasing access to equitable care and disrupting white supremacy culture. Our first question is, “What does equitable and culturally competent care mean to you as an individual?”
Erin: To start, you’ll hear from our Director of Innovation & Capacity Building, Jalah Clayton.
Jalah Clayton: When I think of equitable and culturally competent care, I think of care that meets people where they are to if we’re thinking on an individual level. Equitable care means that I’m not necessarily having the same one size fits all solutions applied to my particular health needs, but I’m having care that is addressing, you know, my, my background, my lived experience, my culture, how I show up in the world as a Black woman. Care that is encompassing all of those kinds of intersectionalities that I hold, and providing solutions for me that are based on my experiences as a person. So I think that’s what it looks like on the individual level. And then, you know, on a community level, so a lot of the work that we do where we operate, I think it means that it’s care that’s informed by what the community has actually asked for. So not a solution that is based on some sort of, like, standardized idea of this is what health must look like to everybody, but again, like care that has taken into account and actually genuinely listen to what the community has said that they mean.
Erin: Next, you’ll hear again from our Executive Director, Weyling, again.
Weyling: Yeah, I would, I would agree with that, too. It was, it was a really good definition, Jalah. I think, like when I think about it, it’s it’s like a tailored plan for yourself, in regards to your your individual needs in relation to your culture. So an example for me would be recognizing, so I, I’m born and raised here in eastern North Carolina, majority African American community, and we all you know, love soul food here, and believe in our barbecue, you know, we’re vinegar base, we will put it up against anybody in the state in a part of the state. But you know, just thinking about, like, our diet here is a big part of our health and, like care, not saying, “Okay, you can’t eat this, you can’t eat that,” but rather, try this method in cooking your collards or, you know, using less salt, or maybe using Mrs. Dash and being more culturally aware of the type of care that’s needed. Because, you know, just just me and my family, if we had to totally turn our diet away, like, you know, that’d be a big blow to our family dynamic. And other things as well. Other dynamics, as well just says, you know, just take into account where people are. In other places, you know, there was those food trucks and things of that nature, but we have like mobile units now, because there’s a lot of people that are lacking transportation, going to where people are, and making healthcare more accessible, more tailored and more in tune with patients and with community members needs. So I’ve seen it firsthand, and my experience is it can work in is what’s needed right now.
Erin: Now you’ll hear from our Director of Community Outreach, Shaunessy Lofton.
Shaunessy Lofton: Yeah, I’d have to also agree. You know, equitable and culturally competent health care, as an individual, I always think about the social determinants of health and how medicine isn’t just molecular, and how we must consider people’s lived context when we’re developing treatment plans, because that will affect if the treatment plan is actually sustainable, or even possible. We look at SMART goals, right? And we want to make sure that patients can actually attain that, but we have to consider what they have going on, and we have to have those conversations. And so, equitable care is having those uncomfortable conversations that will help maximize when people are getting care, and they’re in that space – or when I’m getting care and in that space – that will maximize the moment. But also to think about long-term sustainability; it’ll give that security because you have a sense of awareness, and it’s no longer the excuse of, you know, I have 15 minutes with the doctor and I can’t even discuss – no, that’s that’s not enough, because those 15 minutes could have been transformative for a person who potentially is struggling with something else which is causing them to have the medical issue that they’re having, but they’re not able to really talk about it because we live in a system of surveillance. So just being nervous of what if, what happens next.
Shaunessy: Actually, also making sure that people are comfortable and trusting of the system to even have those conversations. And when the opportunity comes and it’s not comfortable, really honing in, engaging in and using that as an opportunity to really understand and strategize together so that communities can know, you are the center of your health. You are the center of you, and you are the expert, and while I may – while a physician may – have the evidence base and the science behind it, you know what’s attainable. You know your everyday lived experience and why you show up the way that you do. And so when I think about equitable and culturally competent , or culturally appropriate, healthcare, I think about welcoming people as their authentic selves, and not just as patients with an issue that needs to be diagnosed.
Erin: And now you’ll hear from me, Director of Communications, Erin Storie.
Erin: I think for me, equitable care, I think of it really as access to care, just because of my background. Like Weyling, I’m from the Eastern part of the state, and I’m from very rural area. So, we experienced a real lack of being able to have providers in the area, especially a consistent provider. Outside of just having a family practice, doctor, if you need to go to a hospital or a specialist, you would have to drive at least 30 minutes away. So for me, that’s really shaped how I view equity when it comes to health care, is to make sure that everyone has reasonable access to the services that they need.
Shaunessy: I wouldn’t even look at it as like cultural competence here; we’re looking at it as a care system that practices on a continuum of cultural humility. There’s no expert of culture, because culture is ever evolving; generations are shaping what does new look like. And so, I think more than anything, community centered care, patient centered care, family centered care, is a way to practice that cultural humility aspect. Because, okay, we have three Black people on our staff. All of our stories are different, so it wouldn’t be fair to assume just because we identify all as Black that we have the same practices, because we all engage with our community differently. And so, I think it’s giving that space for people to understand there’s power in lived experience, and also for them to share their story that will help inform how can I keep the care that I’m providing to you, how do I keep you centered in the middle of the care, rather than the issue or the problem or disease?
Jalah: Yeah, Shaunessy, and I love what you said, too, about being able to give culturally competent care doesn’t necessarily mean that one day the field of health will have just magically understood everyone’s culture and can be an expert in everyone’s culture and be able to expertly deliver culturally competent care. I think this is something – actually, Shaunessy, shout out to you, because this is something that you have taught me, just through the course of this work – viewing equity as a process and not a destination that also factors in there. And that will we truly have systems that have changed to the point where care is patient and community centered, then naturally and organically incorporated within to the process, is that cycle of evaluating: okay, is this care that we’re delivering to the specific community, does it make sense for the times that we’re in, you know? And as we all know – and living through the unprecedented times that we’re living through right now – a lot can change in a year.
Jalah: So, what is the process for constantly putting the community at the center and constantly listening to the community, because we put them at the center and then adjusting? Not in a way of: okay, we’re working towards this destination that we will have a perfect understanding of everything this community has ever told us – no! But that we’re in a relationship with this community where they know that they can trust that their care systems are listening and responding in a way that it is not burdensome to do that adjustment. Where communities are not just being tolerated in that process of adjustment but where they’re actually being uplifted.
Shaunessy: I would also say, if we focus so much on the competency side of things, then it would become a checklist rather than an organic process. And I think with cultural humility, it provides a space where change can occur and it’s okay. Whereas cultural competency is like, “I’m a mastermind of this and I’ve studied your culture, and because of this, you do this…” No, because everyone engages with their culture differently. So really just looking at it as a continuum, but also, I think, we have been far away from having conversations about change, but change is gonna happen regardless. And so, being open to that, and understanding that change comes from people thinking differently, people having different experiences… And so, how, as a profession, can we meet people where they are. That’s equity, right? Really meeting people where they are, and then also not looking at it as a disadvantage – because we’ve basically created the standard practice for this type of people – but we know that people are complex and people deal with wicked issues and wicked problems that are really hard to figure out.
Shaunessy: It’s very complex, and so how can we create systems that are going to be open to the complexity of people? No two people are the same. I don’t care – me and my mom are two different people, just like me and my dad are two different people. The treatment plan for me, regardless if we have the same disease may be different because of the my lifestyle, my behavior, my social environment, how I work, who I have insurance with, if I’m employed. We just have to be open to understanding that the human being is so complex, and there is never going to be a cookie cutter shape to fit all.
Erin: I think that’s one of the reasons that it’s so important to have open dialogue with the community, as well. So that you can continue to learn from them what their needs are; so that you can continue to provide for them and develop the resources for them that are needed.
Shaunessy: That’s another thing, when we think about implicit biases. If we don’t give people time to communicate their lived experiences, we’re just going to be leading by what we think we know, subconsciously, just based off of our engagement or observation. So I remember there was a study through Harvard that looked at implicit bias across physicians, and treatment options and things like that. And it showed there were implicit biases for black and brown bodies; that physicians were treating the patients with a different medication just based off of their phenotype. But, that phenotype doesn’t give lived experience, it doesn’t tell you about a person.
Shaunessy: And one of the TED talks that I love the most is about a single story. I forgot what it’s called, but it’s really good, and it really debunks the harm of assuming, the harm of what we have is subconscious thoughts and implicit biases, because we are human. But, how are we navigating that when we think about larger system change and long term equity? And like Jalah was saying earlier, equity is not a destination, it’s a journey. There’s never going to be the perfect spot, because you can’t please everybody. But, how can we open our systems to have in those types of conversations?
Jalah: To both of what you’re saying, Shaunessy and Erin – and where we talked a lot about in our work – structural empathy. So, in the field of public health and healthcare, we’ve heard a lot of discussion around the effects of structural violence, or the effects of our system that is violent towards certain communities or in historically marginalized communities. So, what is the response to structural violence? We think of that as structural empathy. So, how can we, as Care Share, be having conversations and building movements that move us more towards that space of a structure that is empathetic towards people’s lived experiences? And a structure that – rather than trying to point the finger at somebody for individual or or community level shortcomings – it’s how can we take that assets based approach and look at what is here, look at where they’re at, what is working and amplify more of that, and kind of more positively reinforce. And then to have the basic building block of what empathy is: showing up for people that – if I was down on my luck, or in a situation where I’m needing support from my neighbor or my community, I would hope that someone would reach out a hand to me and help me out. How can we create more of a culture around structural empathy, rather than that structural violence?
Erin: So our next question is: since we’ve discussed structurally empathetic systems, as opposed to structurally violent systems, what would a structurally empathetic healthcare system looks like to you?
Erin: To be structurally empathetic, it has to be made so that the patient can receive as much individualized care as possible. So, if the patient is from a marginalized group – like, for example, I’m part of the LGBTQ community, and one thing that when I go to see providers, I will seek out if they say that they’re LGBTQ friendly. Otherwise, I don’t really feel comfortable sharing with them. So, I would think for me, being in a empathetically structured healthcare system, that would not have to be such a burden on myself to be, like, searching through their little profile, see if they have a little rainbow next to it or something like that; and then going in and being able to discuss my issues and having them spend time with you so that you don’t feel rushed. There are a lot of structural reasons why the doctor only spends 15 minutes with you, which is outside of their control; being able to spend time with the person, having consistent providers, something like that I see as an empathetic structure.
Jalah: Yeah. And so, my first thing that – as you were saying – that I was thinking about was: a 15 minute appointment at your doctor’s office, there’s no way to get – and especially if we’re considering, say, if it’s your first time visiting this provider – and like you said, I know that they’re under certain requirements that are beyond their control, but also, too, then that’s like, “well, let’s look at whose control is it in? And why has this become the norm?” And then like I was saying earlier, within that timeframe, there’s no way you can give full, comprehensive – and in a conversation that is actually building trust between you and that provider – but a comprehensive scope of your medical history, scope of what’s going on that you’re needing support with… There’s no way to do that.
Jalah: And then I think, too, another side of that, from the insurance perspective – unfortunately, right now, I feel like that is another facet that is definitely playing into a more structurally violent system; just with people not really having a great understanding of what will be covered by their insurance and what won’t. I would say an empathetic structure would be one where people aren’t feeling like, “Well, I can’t go to the doctor, because I don’t know if this trip to the doctor will bankrupt me medically, because I don’t know what will be covered by my insurance, and that’s not super clear. And it’s not something where I can easily ask a question on my doctor and get that question answered.”
Weyling: On this topic, as well, I think we see a lot of that care in other countries. Here is such a capitalistic society; thinking of how much we spend on healthcare and the return on that, when you look at so many different health issues and communities, and people, and kids, and just like with the space that you were just talking about, Jalah. But in other countries, they get it right. And even when it comes to – I’m getting out there – but, when it comes to gun safety and things of that nature, I was just talking with someone that went overseas, and they was like, they don’t have to really care about shootings and things, because people just didn’t have guns there. And so just thinking of where it’s more emphasis on the social needs, the needs that are pertaining to the people having their care first, and that being supported without the big pharma and the investors that is looking at the bottom line, and things of that nature. So, in a perfect world, for care here in the states, if we can remove that factor from it and really get to how we are showing up and really being empathetic about providing the most appropriate care, at the right time, for the individual, we’ll be essentially where we’ve seen other places of the world that are really doing this thing successfully.
Erin: I think to me, a lot of times that – I mean, inequities come from structural racism, and come from structural classism, and well, they really come from a white supremacist system that’s patriarchal and homophobic – but, such a huge issue that comes from all of that violent structure is lack of resources, and lack of care for people that don’t have resources within our systems. It costs too much. I don’t think anyone in the US can really afford to get seriously ill without it costing hundreds of thousands of dollars. But even just going to the doctor for your checkup, a lot of people will put it off just because they can’t afford it. And that has such a ripple effect on the overall health of the country. And not being able to receive preventive services makes people’s health in the long run so much worse.
Jalah: I appreciate you just kind of naming the isms. I think, to your point, and then Weyling, the point that you were making earlier, anything that we try to do within a capitalist structure – that is the larger overarching, dominant culture of our country – within a capitalist system, that is the system by design. I think it’s just unfortunate that has bled over into our health care system. And then, too, all of these ripple effects on the health outcomes that the system operating this way contributes to, it also feeds into this mentality of this sense individualism that feeds into this weird individual responsibility thing that happens when it comes to people’s health. I don’t know, it seems like whenever a conversation is brought up about, “Well, why is this one particular community facing this one particular health outcome chronically?” There’s always that two sides of the conversation that come up, that’s like, “Well, that’s just how that community acts.” And then that’s feeding into stereotypes.
Jalah: It feels like it’s so hard every time to move the needle of the conversation over to – “No, it’s not how that community is like.” It’s not just their health behaviors. It’s because of operating in a capitalist structure, our healthcare system, therefore, is very responsive, rather than – or reactive – rather than proactive; where folks don’t have access to the preventative resources that can keep them from injury and illness in the first place. I think that’s just another interesting and critical element to the conversation to understand, that this is why our healthcare system, unfortunately, feeds into that structural violence piece, because capitalism has bled over into the healthcare space. And then fed into that mentality that some people just don’t deserve to have health because they can’t afford it. And people thinking that health is a privilege when it should be – you know, we’re talking about ethical, how humans should be treating other humans – health is a right.
Shaunessy: Yeah, I’m also an agreement with what everyone has said, and I want to give an example. So, I was an intern at Wake Forest Baptist Office of Cancer Health Equity, and I worked closely with the Downtown Health Plaza out of Winston Salem. Around that time they had a panel of like 15,000 Medicaid patients, and they had seen – because I did work for the Office of Cancer Health Equity Research, has that the use of cigarettes is directly correlated to lung cancer- and so they had a really high number of patients or clients that were smoking cigarettes. And they were like, “Well, we have the Quitline form, we have all these things.” But they also had a great number of Hispanic patients, too. But they had a Quitline form and it was an English. When we think of what equitable practice actually looks like, like practical – I know, we’ve talked a lot about the issues of our system, but what can we do? Simple things like translating documents so that people that have language barriers can still have the right and access to resources that are readily accessible.
Shaunessy: How can we put hard stops in our electronic health records? When a patient comes and they’re checking in, how do we screen for these types of things just in case there is no opportunity in the visit for us to engage them that way. Those hard stops, those notices that are like “the patient indicated that they are a tobacco user and they’re also interested in quitting” – because majority of the time we go to the doctor, they’re always asking us to fill out something. One thing about it, they will make sure that insurance is up to date, and the address is up to date. And if anything is changed, they’re going to ask you every time. And so, just like we put just as much emphasis on that, we should also do that when we talk about the social context that people live in, or just hard stops to assess if a patient is using tobacco. Or if a patient has a language barrier, being able to provide resources for them, and not saying we don’t have resources for you, without saying that we don’t have resources for you because we don’t have them in your specific native language. There’s some intentionality as far as system wise that we could do, but it takes more than just an idea, or just a circumstance, or a case for one. That’s one clinic, and there’s plenty of clinics in the state.
Shaunessy: So, that’s something that I’ve seen that was actual practical experience that I had, and I was so happy to be a part of that because I was working as an intern with the Office of Cancer Health Equity. And so when we think about cancer health equity, that’s another layer to health equity. We got cancer added on to it, which is a disease that metastasizes and manifests really rapid and really quickly. And so, how can we be more intentional with our preventative strategies when it comes to our electronic health records? That’s a question I have for this system; probably not a question we’re going to answer here. But as we think about solutions, rather than the issues – because we know the United States of America has struggled in many areas, and then we’ve done great in some areas as well – but when we think about equity and healthcare, it’s rough around the edges. But we’re trying, and there are smaller clinics that are willing to do the work. But, that also took them having a director that had a Master’s of Public Health, and so she took that perspective, and she understood. A lot of times when you just study molecularly, you don’t think about whole person. And so that was a practical experience that I’ve had, specifically with a clinic, where they actually practice equity in their standard practice.
Erin: I think that point is so important, especially when you bring up low English proficiency – and then you also bring up leadership as well – with low English proficiency, that population falls through the cracks a lot more, because even with translations, and things like that, a lot of that is very cultural – language is – and so you really need somebody from the community to really reach out to that population, and to make sure they’re getting the information correctly. But, when you talk about leadership, as well, leadership has to be on board for these changes, or things aren’t going to change. Because they can assume everything’s going fine. Especially if they’re not listening to the employees who are interacting with the patients every day and advocating for their needs.
Erin: Our next question is: What does it mean to lift community voice in your work?
Jalah: So my background in public health is more in the food access and social justice – more on the agriculture, urban farming, that kind of side. So, in some work that I was doing with a local food policy council, where one of their key programs was supporting farmers markets across the county that were serving a SNAP Double Bucks program. If folks haven’t heard of Double Bucks, it’s a program that allows for folks that are receiving SNAP benefits to be able to shop at farmer’s markets and double their dollars, with the idea of creating more of an opportunity for access to fresh, locally grown, healthy fruits and vegetable kind of food. And in the process of doing that program, and something that speaks really well to the structural empathy that we were talking about earlier, is they – and I kind of helped to make the process a little bit more integrated – but they were really good about doing, multiple times a year, community surveying at the farmers markets that were supporting the program, to be able to be getting that input directly from folks that the program was trying to serve and creating a regular field for gathering that feedback and input. And it was something that was so consistent that, I started to see when we were analyzing survey results over time, where members were like looking forward to when the surveys would come out, because they knew that there was going to be changes coming after this, or small tweaks and stuff. Whether that meant changing something about the style of the tokens or changing –
Jalah: But basically, I say all this to say, I think it was it was very fulfilling from the the perspective of equity kind of just being a process and not a destination. But to see where community community members were looking forward to that survey, and looking forward to having a space where they were really knowing that their opinions were going to be heard and there was going to be a response after. Because – I think a lot of the times this is something that we might not realize as a channel for unintentional harm within this work, but – if you’re going out and doing community surveying and then not doing nothing with your survey results, or doing complete opposite based on the survey results, or skewing the results to make it so that you can go and do the program that you wanted to be there anyway, the community is going to recognize that and then essentially you’re creating a mechanism for more distrust to grow.
Erin: I really, really agree that’s so important, because I think we were talking earlier about collecting data and having hard stops through the EHR. The FQHC that I worked at previously, we did have a lot of hard stops in the EHR and we did ask a lot of questions about the social determinants of health. And there was a limited amount of things that we could really do for the patient depending on if they answered that they were in need of those services. So to some degree, I always kind of wondered what the patients really thought about that. If you’re getting those questions asked, and then you answer, “Yeah, I don’t have enough food at the end of the month,” and the person checking you in just like “Oh, okay, I’m just gonna check this box about it.” How does that feel?
Jalah: Exactly. That just feels like – or could be a way to make it feel – even more, create more harm or make it feel even worse. Because we don’t know what level of vulnerability or transparency that individual had to access to be able to share that with their provider. And then to feel like, “Oh, they just wanted a piece of my information.” And I think also where we have conversations about community data, and just what it means for our healthcare system to be gathering – healthcare technology – we know that lots of different systems at this point are collecting information and data on us. But especially in a health setting, to be collecting all this information, and then still feeling like your health needs aren’t being met…But it’s like, look, ya’ll have every piece ever; y’all know more about me than I probably even know about myself, and I’m still not getting the care that I need – what does that look like?
Jalah: And where these healthcare systems can then use that data to go and get large amounts of funding that are supporting their work that they’re doing, or their community outreach. But, we don’t think about what does that mean, actually, to communities that are not having their health needs met. What does that mean, as far as data ownership? I know, personally, if I think my health information is being used to help somebody else get paid that has nothing to do with my health improving, I personally don’t – I want to be involved in some decisions about where that data is going, at the very least.
Weyling: Exactly. And I completely agree with that, Jalah. And I think, too, it boils down to individually and collectively telling your story. You’ve seen a lot of examples of institutions that use data and will be able to betray your community and your needs in a specific way that benefits them, that may not benefit the community at all. Coming from – again, and I’m not gonna beat the dead horse about being a rural community – but, we get called – we’re tier one community; you know, we are marginalized, all of this, but at the end of the day we are people, we are empowered, and I was so glad when people – I think it was the NC Rural Center – I was there and they was like, we are no longer using the word, the word “resilient” for communities that have few resources. We are tired of just being resilient, having to overcome and just – we know that, but when is it going to end?
Weyling: So community voice is so vital, because, like Shaunessy says a lot, we have lived experiences and that’s our tool at the end of the day. Because we’re experts at this knowledge, at our experiences, and we have to make our own way. And that’s one of the things that I like for people in the community, especially here, to realize there is power in our voice and the change starts with community. The elected official level, at the policy level – and I think that’s important, too, when we are thinking about care, because some of the best care that I’ve seen working at the health center is when providers take the extra time to listen to the majority of their patients. There would be certain things that we would be doing operational wise, and providers will say: “Well, I got a lot of patients saying, ‘Hey, this isn’t working for them, they’re feeling this particular way, and in this community, we may need to rethink this.'” And it made me feel really good providing that care in the community that I live in, and was born and raised in, because that’s when I was like: okay, well, we really have people that genuinely care that’s really tailoring this care to the needs of the community. And, you know, it’s person centered care at its essence.
Weyling: Community voice is needed. I’m grateful that Care Share is very serious, and we really take that to heart, being that we are intentional about our approach to how we utilize and leverage community voice. Because, in the wrong hands, it can be detrimental to communities, as well. And even when we think about how communities is portrayed – kind of leaving the area of health but – here in Ahoskie we had a lot of shootings, and we have people from Raleigh, and people that look on Facebook and say, “Oh, that’s a warzone in Ahoskie. We don’t want to go there; I’m gonna get shot just coming outside.” And things on social media can go different ways so fast that they can become the narrative. But, one thing we’ve been saying is that we gotta do more positive things. We got to put more, better energy into the community, so that we can kind of bring light to some of that darkness that comes throughout the community. And so, one of the things with communication that I’m glad that we had discussion about was the storytelling that we’re doing and being able to let communities tell their story, and organizations tell their story. And I feel like from a lot of different ways we look at it, from the community, and also from individual standpoint. You know, getting in any clinic with a provider, being empowered enough to talk about those experiences for your care.
Erin: I feel like from a communications standpoint – since you brought up storytelling – that’s always the most important work that I can do, is to share either the community or the organization’s story. Like we did in the Community Voices Making Change video series, or when we did the NC BIPOC Leaders series as well. That puts the human element into it so much. But also, at the same time, it’s such a privilege, both as an organization and for me, in my role, to have people willing to share their story. Especially the people who are willing to share their story, because they also want to spread awareness about things that happened to them so that they can also impact their community.
Jalah: Yeah, and I think it’s worth pointing out, too, we come from this perspective, and throughout this whole conversation we’re all talking about our lived experiences that led us to having certain encounters, or led us, or our family members, or our loved ones, or people close to us, to having encounters with the system that were displays of that structural violence. So, I think, coming from the perspective of being able to directly relate to, “If the systems were changed in these kinds of ways to be more empathetic, this is what that looks like.” I think that also allows us to come from just a helpful perspective. And then, also, a space to be able to neutrally bring others into conversation that might not see it the same way – but I think that’s another thing, too. That’s how we get to real system change. Understanding, “What way do you see it? And why do you see it that way?” And how can I utilize my lived experience as leverage to help grow the general understanding of, just because that might not have been your experience – because you’re operating from a place of privilege – doesn’t mean that we can’t change things for the better for all.
Shaunessy: So, uplifting community voice for me really looks like being intentional. It’s not just a space where you’re collecting – and so many communities have been through this. Previous we were talking data collection, everything like that – Qualitative data is data, and lived experience is data. And a lot of times people use data to paint a picture rather than to strategize to develop solutions and take it to people who actually have big influences on policy, who create policy. And so for me, elevating voice means not only having those conversations, going into the community, really understanding lived experiences, but using it as a mobilizer of the work to advocate for systemic change.
Shaunessy: Because too often we just grab qualitative data and and use it as a case – most likely a business case in the United States of America – but just really being intentional with what is the “what”, the “so what” and “now what”? Now that you have this story, now that you understand this community’s voice, now that you have data that’s precious, what are you going to do with it? And what does that mean for them? What is the ROI of me expressing my lived experience, and telling you about my community and inviting you in to really hear about us? What are you going to do that’s going to bring my community back benefit? And I think, for us as an organization at Care Share, we’ve been trying to be super intentional with “what does that look like?” So, what is the the “now what?” What are we doing now that we know? And so if that looks at the community’s assets and tries to aid in the building of the capacity of their assets, then I think we’re committed to that. But too often are we collecting data and using it as a business case, but not as a business case to go back and help and change the same very things that they’re expressing to you that it’s an issue in their communities.
Jalah: Yeah, Shaunessy, and I think one other thing, too, that we do really well across the board as an organization, regardless of what program or initiative we’re working on… I feel like whenever we’re starting to brainstorm any new project or initiative or anything, we’re really thinking about how can we start with the community. How can we start with community input first? So, before any of our own assumptions or opinions – or even our own lived experience – can influence how we are going about actually developing that program, we’re thinking, “Let’s run the initial idea by somebody else.” Whether that be us going to our board and asking for them to gather input from their networks that are a little bit more close to the community, that grassroots level. Just as you were saying that, that stands out to me as something we do well, regardless of what program we’re working on.
Jalah: And then I’ll say, specifically, within what’s coming to mind for a program that we’re in the process of still kind of building out, so we are doing a lot of that community listening, is with our Pathways Program. Our intention behind it is to create more opportunity for BIPOC students to be able to have a supported internship experience that is one) helping to hold their institution more accountable to supporting their internship experience and supporting their transferable skills to the workforce, and then two) preparing them to be a leader in the healthcare field. With the idea of students that are coming from marginalized backgrounds, we’re wanting to get more of that voice into these healthcare decision making and leadership roles, so that the outcome of that is that these decisions that are being made within the healthcare field and sector are informed by folks that historically have been negatively impacted the most.
Jalah: So yeah, creating more of the opportunity to do that, starting with the program, we have come completely, since the beginning, started with gathering BIPOC students’ perspectives. I feel like when we first were initially hosting interviews and focus groups for BIPOC students, the way that students were like, “Wow, this isn’t too frequent where people are asking for our feedback and our feelings about having to do an internship.” And, as we all know, a lot of times, unfortunately, operating in this capitalist structure, an unpaid internship after you’ve had to sacrifice who knows what for four years or more of working towards a degree, and then have to sacrifice time for an unpaid internship that may or may not be directly correlated to the skills and characteristics you actually want to get out of that internship experience. That just comes to mind as one specific example of how we’ve started with the community that we’re trying to impact; started first with their input before even building out the program.
Shaunessy: I think also what we have to consider is, in the work of health equity or equity in general, everybody has a role. Just because we work in equity space doesn’t mean that we don’t have lived experiences that have been inequitable to us. So, everyone has a role, everyone has lived experiences, and there is value in understanding lived experiences, and what was the everyday context for all communities outside of our own, and really just given them that space. And it’s not just a mic and say, “Okay, this is town hall.” What’s the strategy; what was happened afterwards? Now that you all know, now what? Because a lot of people don’t talk because there’s no action after it.
Shaunessy: And I think us as an organization – you know, Jayla alluded to one of our programs – we alluded to what we’re doing as far as with specific communities, you have a responsibility, right? And you’re not going to be able to fix everybody and everything, but when someone shares something with you from a community, they’re coming to you with the expectation that you know something or you can connect something or someone to make a change or difference if it’s something that’s detrimental to the community. You don’t just go into communities and collect data, because that does the community no benefit besides maybe awareness that they get if y’all get published – or the organization, or the research university gets published – and they’ve been talking about the community. But, there’s no benefit besides awareness.
Shaunessy: What does advocacy and health equity in action look like? When you learn, and when you hear and when you talk to these communities, what are you actively doing? There’s too many resources in this world for us not to reallocate where they are going. Because we know that because of the history of the United States of America, and the history of oppression, and structural racism, and all of that, that there has been a misallocation of resources. There’s resources here, we have just allocated them – or systems have allocated them – based off of the best business case rather than for the people. I think we should be more for the people than the money. Even though it takes money to do things, we got to be for the people.
Erin: And our final question is: when it comes to White supremacy culture, what is your lived experience with it and how do you see ways to dismantle it in your work at Care Share?
Weyling: I can physically feel a difference from not working in White supremacy culture. And I think when you know, at your core, that structure of violence exists and you’re within that system, it takes a different type of toll on. I’ve seen it from so many different levels, but I knew when I was doing everything in my might just to have a seat at the table by somebody that just walked through the door, and I’m here, like, it’s never enough, it’s to the point where you know, you’re rushed is the urgency. And, also, the lack of accountability. There’s just so many different aspects of White supremacy culture that lives through systems; this is the reason why they’re siloed and collaboration doesn’t exist, and the voice isn’t given to the community.
Weyling: I mean, that’s where we are right now. We have a long way to go, but I do see the tide turning, I will say. I’m happy that we are being able to partner with other organizations and funders that are rethinking how they approach even funding organizations. You know, looking at the organizations that are rooted in equity and in justice, and also how they are engaging with community members. We was talking earlier about the structures and how racism built these barriers long ago, and they’re still here now in 2023. And even driving through my community – every town has a railroad track, and just being able to visibly see what White supremacy culture and what redlining and things of that nature has done to the community – and then you think about how that trickles down to health, how it trickles down to these missions that organizations are charged with doing. It runs deep, but I think now we do see people that are being brave enough to step up and do something about it.
Jalah: Yeah, I think, too – just like you were saying, Weyling – specifically being able to name racism as the root. We know – in the midst of what the last several years in this country have looked like after the murder of George Floyd – we know that it takes the work of not just not being racist, but being actively anti-racist to change the tide of the direction that systems in this country are trending toward. I think being able to explicitly name within our strategic plan that we are disrupting White supremacy culture, that we are restructuring our organization internally to be able to ensure that we’re putting our money where our mouth is and, truly, not just talk about the work of being anti-racist, or talk about the work of equity, but truly strategize for ways to put that into action.
Jalah: Like you were saying, Weyling, this being the first time in my professional career to have been a part of an environment and organization like this, you feel the difference. Especially – just speaking from my experience as a black woman – a lot of professional environments that you’re preparing to walk in to, 9 times out of 10, I’m preparing for “Okay, what are what are the microaggressions gonna be like?” As a Black woman that has been in predominantly White environments for most of my upbringing and academic career, you’re preparing for what are the microaggressions, having to explain or qualify my lived experience, and dealing with having to dismantle systems while also dealing with those things in your everyday life. It’s exhausting. That can be very exhausting.
Jalah: Being able to be a part of an organization that really takes a look at the characteristics of White supremacy culture, and where we can have transparent conversations about if we are playing into characteristics of White supremacy culture – because characteristics of White supremacy culture affect everyone, no matter you’rer Black, White, anything – they permeate everywhere. Being able to have those conversations internally as an organization, it’s just refreshing. And it’s very rewarding to be able to have similar kinds of conversations with other like minded organizations where that’s also a central value.
Erin: I felt like, for me, when it comes to Care Share – and then us being able to explicitly name White supremacy culture within our strategic plan, and it’s on our website, and using that language is almost kind of like a weight is off your shoulders when you’re addressing equity issues, because you don’t have to look the other way, and pretend that this reality isn’t there when you can really kind of get to the heart of what the cause of this issue is. When we want to make systemic change, when we’re working with these structurally racist systems, unless you address the inherent racism within the system that’s there from the very beginning, that’s legally there, that was intended to be there, was intended to benefit White individuals and harm individuals of color, then you’re never really going to get to where you can even build another foundation for change, because everything is trying to work around this, kind of like, white lie about where the problems are coming from and it doesn’t address the source.
Erin: Just to end the conversation, I wanted to ask: What is it you think we’re doing a Care Share that’s dismantling white supremacy culture?
Weyling: I will say, we do a lot, but just calling it out and being intentional and vocal. One of the things that I’m really excited about – Shaunessy is leading our efforts with community strategist – and knowing that we have a board that is in full support of this work, and in support of how we approach it as well. One of the things is giving power to the people that need it most; we’ve been seeing a lot of disenfranchised communities and populations and looking at the communities that are suffering now because of White supremacy cultural practices, working with them, helping to empower. We talked about lifting their voice, making sure that it’s lifted to the right destination and lifted in the right way – a couple of different ways that we’re going at it. But, I think that intentionality part, and just being vocal and making the stand, and also holding ourselves accountable. So, the development of the community strategist board is making sure that we aren’t instilling any White supremacy culture practices within our own organizations, and how we show up to community and to meetings, and to partners. So that accountability factor is very important to me, and there’s a lot of different ways we’re going about it, but I think this is a start for us.
Erin: I think also the concept of the accountability to the community, and wanting to collaborate with the community, and making sure that we receive their feedback – that’s something that takes a little bit more time, and White supremacy culture is so focused on results, and results with speed, to the point where, even if it’s not the best way to go about it, it got done fast, and it got done, and that’s what’s so important. And so, I think with the community strategists, that’s something that might make the work a little slower, but it’s definitely going to be more comprehensive, and it’s going to reflect better what the actual needs are that we need to address.
Jalah: I think one thing, too – just to the point earlier about the characteristic of White supremacy culture – that sense of urgency that puts getting things done fast over getting them done right. I think also, too, just in the nature of that community strategist work – and I think even to where I was talking about our Pathways program – just operating with that sense of lifting community voice and all that we do, something else that is a central value of Care Share, is collaboration and partnerships. So, I think shifting the White supremacy culture characteristic perspective around that urgency to have it done fast, shifting the perspective to more of an urgency to have it done community centered, is something that we’re doing that actively, I guess, like counterculture to that particular White supremacy culture characteristic.
Jalah: Just amplifying and emphasizing that point that you were making earlier, Erin, of even if that might mean that it takes longer, or might mean that before we even develop a program we’re getting the community input, and that might mean that we have to take it back and workshop it, and take it back to community again, and have them see the changes that we’ve made, and then give us feedback to that. You know, kind of engaging in some of that back and forth, while it may feel like a longer process, also within that process we’re building trust with community. Because I think it’s a different tone when someone external to the community is coming in, and they’re like, “Do this right now, we have the grant deadline to meet, so you have to do this, you have to give us your input right away.” For me personally, if somebody was coming to my community and responding like that, that’s going to be “Oh, nope, I’m shutting down,” and that’s giving me less of a reason to give what they’re asking.
Jalah: So I think also being intentional about doing it in a way that’s organic, again, and truly trying to build a relationship that’s centered on trust and centered on that community feeling comfortable with how we’ve gone about approaching them. I think that’s a factor in it, too. And in the work that we’ve been doing, I think I’ve been with Care Share long enough to see sometimes, moving in that kind of way, partners that we’ll try to work with don’t necessarily value – or are more attached to valuing that concept of urgency, rather than having it done right – sometimes that creates some friction within those relationships or partnerships we’re trying to build, too. But, yeah, just us as an organization, being able to remain steadfast and committed to that value of starting with the community first, and ensuring that nothing that we do isn’t done without being community informed, is something that stands out to me about what we do really well. And, again, because it is counterculture, it might not always make sense to others, but I think it makes a lot of sense to us. And I’m glad that we can continue to operate in that way. And then, I think it also reflects internally in our work culture and how we show up; are able to treat one another as a staff, as a board, as a team at Care Share with that same level of respect.
Erin: Thank you so much for listening to the first episode of the Equity+ podcast! We hope you enjoyed the conversation and be sure to subscribe to hear more.
Erin: To learn more about Care Share Health Alliance, visit us at caresharehealth.org and don’t forget to check out our hub for Community Based Organizations working to promote health equity and community voice: the Equity+ Network at equit pn.org. That is E-Q-U-I-T-Y-P-N-dot-org. We can’t wait to connect with you there!