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We are the Maternal Health Learning and Innovation Center, a network of maternal health equity experts and organizations working to make real change for women and birthing people in the U.S.
Our podcast is a series of episodes connecting around culture, lifting voices and stories, exploring innovations in maternal care and discussing ways we can center equity in the way we approach our health and wellness.
Learn more about us, explore our resource center and find support for all maternal health professionals at MaternalHealthLearning.org.
For more podcast information and content, visit MaternalHealthPodcast.org.
Dietre - 00:00:04:
Hi, and welcome back. My name is Dietre Epps. I am the CEO and founder of RACE for Equity. We are a global management consulting firm that's focused on supporting leaders to engage the community in the development of results-based strategies that advance equity. We're very excited to be with you today to talk about how to engage people with a lived experience in a maternal health task force. This is the second podcast in a series of three podcasts, and I'm joined today by three members of the Lived Experience Advisory Group for the Maternal Health Learning and Innovation Center that has been in place for the last five years, housed at the University of North Carolina, Chapel Hill, and funded by HRSA. So we'd like to start off first by introducing each of the Lived Experience Advisory Group members. Fondly known as the LEAG. And we'll start with Maya. Would you like to introduce yourself and tell us a little bit about your work as a LEAG member?
Maya - 00:01:06:
Yes. My name is Maya Jackson. I am from Durham, North Carolina. I'm a mama of five. I'm also a community-based doula, and I run a community-based maternal health nonprofit called MAAME. I believe I was nominated to participate on the LEAG, which I thought was really cool because that meant that someone from my community felt like I would be a great representative to be present on the LEAG. And what I loved about the LEAG... More than any other groups that I had joined, advisory groups at that time, is that we all had different lived experiences, but also a lot of similarities as well. And to really understand how folks were just navigating the different challenges within their own community, I felt like the LEAG really created a space for us to work, but also find solidarity a lot of times in the challenges that we're dealing with, especially in the midst of the pandemic.
Dietre - 00:02:07:
Yes. And so thank you for joining us today. Just to set a little context before we invite Courtnie and Megan for you to introduce yourselves. I see that you mentioned, Maya, that we started in the pandemic. Yes. So this group has been together for several years now and would love to if you could, as you introduce yourselves, Courtnie and Megan, if you can talk a little bit about where you're located and what made you join a Lived Experience Advisory Group.
Courtnie - 00:02:37:
I'm Courtnie Carter. I'm located in Burlington, North Carolina. I am a boy mom of two boys that are a 10-year age gap, but somehow still kind of act alike. So I'm also a lactation support provider, a community health care worker, and just a mama who had a baby during a pandemic and was searching for my community.
Megan - 00:03:05:
I'm Megan McKenzie and I'm in Washington state and I'm a mom of three and I gave birth to my last baby during the pandemic and I joined the LEAG to try to give a voice to other mothers, you know, that I've worked with. And just to try to find some purpose outside of being a mom, trying to give a voice to the things that moms go through. It just seemed like a fitting place to be.
Dietre - 00:03:39:
Thank you. Thanks to each of you. And this has been a journey since the Lived Experience Advisory Group first started. Maya, as you shared, each of you was nominated by community partners who felt that you would be a great addition to the Maternal Telehealth Access Projects Evaluation Team, which RACE for Equity was leading at that time. Now, this podcast is about the maternal health task force, which is a little different than what we were doing at that time. But as you know, a maternal health task force is really designed to bring together partners from across the state to look at data for maternal health and to come together regardless of what role, what organization you're from. All of these organizations can come together to improve maternal health outcomes for women and people giving birth in that state. So if you think about, if you were invited to be a member of a maternal health task force in your state, what would you be looking for? In order to say yes to that request. And we'll start with you, Maya.
Maya - 00:04:50:
I think for me is. Just knowing that the task force is really going to center the voices of community. You know, a lot of strategies or initiatives kind of have a very top-down approach, and communities are the lived experts of how those approaches impact them. And so making sure that... There's some flexibility that when community comes to the table and provides input, that that is really taking consideration that is put, you know, that input is placed in the plans. So that way we know that this just wasn't a situation for someone to fill a seat, but they are looking for some like alignment in which community and the task force is really working hand in hand to try to create some type of impact. So I guess, you know, it's intent and impact in this situation.
Courtnie - 00:05:47:
I would like to add also diversity, not just in what we look like, but our experiences, maybe, you know, what we're doing in the community. We all do different things within community. So that was really one of the things, too, that I loved about the Lived Experience Advisory Group that we are all from is that we had a wide range of different ethnic backgrounds, but also what we actually do.
Megan - 00:06:11:
And I mean... I would echo what Maya said was just wanting to know that, you know, we're going to be heard and that once we're heard that, you know, what we have to say is going to carry weight and is going to be incorporated into solutions. That's really important to me.
Dietre - 00:06:33:
And I know in the first podcast session, I think, Courtnie, you brought up the fact that it would be nice to have an orientation, have somebody reach out to you and give you a little bit of information before the maternal health task force gets started. But let's shift today in this conversation to talk a little bit about once a person with living experience is actually part of the task force. Let's imagine that you're now at the meeting, whether it's virtual or in person, right? It could be either. But imagine that you're a member of that maternal health task force. How can a group show you that they really care about your experiences and opinions, not just at the beginning, but as time goes on?
Courtnie - 00:07:14:
I would say allowing us to be a part of the process step by step, bringing us to the table that shows that our words and our experience hold weight, but also that we are important and that they value our opinion that much to make sure that we are at meetings, that we are given the opportunity and space to share.
Maya - 00:07:35:
And I also think acknowledging the contributions as well. You know, we can be at the meetings, but if you're not honoring the input that that person, you know, placed or stated or crediting them for their work and contribution, I think that also, you know, the size, if you're intentionally really trying to have this person here, I think just having lived experiences at the table can really shift policy. It can save money. Like there's just all these like. Very unique dynamic things that can be done when you've actually had people who've gone through something that you're trying to implement versus like, oh, I have this idea and it hasn't been tested out or we've seen it work someplace else. But how do you know if it's going to work here if you haven't even reached out to the people in the community that you're trying to impact and serve? So I think it could just... Really enhance program planning and implementation, knowing that the people that you're trying to impact, like Courtnie said, were at every single stage of the process to ensure that what the intent was at the beginning is what is going to be that impact at the end.
Megan - 00:08:47:
I think that The two of you said everything that could be said on that one. Thank you.
Dietre - 00:08:53:
Thank you, Megan. And thank you, Courtnie, and Maya? So. For you, when you first decided to join the Lived Experience Advisory Group, what were some emotions that you experienced as you shifted from yes to actually being a part of the LEAG?
Maya - 00:09:14:
Well, I think for me at that time, I think just personally dealing with the pandemic. Dealing with a toddler that I later discovered had autism, dealing with the loss of my grandmother during the beginning of the pandemic due to COVID, and also just doing this work at the community level. When you're doing this work at the community level, a lot of times it's long hours, it's for free, and just trying to keep my head above water to do something that I love, which is being in support of my community and taking care of my... My family as well. I think it was just kind of overwhelming. I think that was kind of like the common trend for a lot of us is that. The LEAG provided a space for us to just kind of breathe. And share. Now, mind you, we still had a goal at hand that we were working towards a part of the project. But I think this was also like the first time where we could all just kind of exhale of the things that were around us and the challenges that we were dealing with in the pandemic. And I feel like. The LEAG has probably been one of the most healing things for me during that time frame because it was a really. It was a really difficult time in my life. And so I'm just like super appreciative. That the LEAG provided me that outlet to just kind of like. Be present and just be present with my feelings. Because when I'm a community, I don't like to show that I'm overwhelmed or that I'm dealing with stuff. Because I know that other people are also dealing with stuff. So I try to keep myself together. But yeah, I think that period was just such a very difficult time that I look forward to having these calls. And I think the rest of us did too. Like, do we have a meeting today? I just felt like it really brought a lot of us. In a space that we needed that we didn't have at home sometimes.
Courtnie - 00:11:15:
I would echo everything Maya said. I am so thankful for that opportunity, that space, but also the relationships and friendships that I really genuinely have, genuine friendships with these ladies that I met through the LEAG. So it's been great. That was a tough time. I had just had my son March 9th. The world shut down March 13th. He was colic. I had a 10-year-old. I was so depressed and anxious. But like Maya said, I really looked forward to just being in the space to talk through things, to share my experience and exhale.
Megan - 00:11:50:
Yeah, I think. It just felt nice to be part of a group and a group of other mothers that were going through the same things. And, um, leaders that were understanding and compassionate and just being part of community that was supportive.
Dietre - 00:12:09:
So it was a little surprising that being asked to be a member of a Lived Experience Advisory Group, we were inviting you in to help with evaluation of a maternal telehealth access project. So to know that that space that was created was so nurturing for you and so life affirming is actually deeply meaningful for me. So I appreciate each of you for the words that you shared. And as you said yes during a pandemic, right? And so there are some folks that now, you know, we might not have the challenge of a full pandemic, but people are going through challenges. What are some things that make it hard for people with living experiences to join groups like the maternal health task force?
Maya - 00:12:54:
I think just accessibility. And that's something that we're. Always. Telling, you know, task force or non-community groups who want to work with community is to be flexible, you know, between balancing school, work. All the things in community and life, you know, it's just very hard. Like it's just a, I don't, even though we're out of the pandemic, people are not out of the situations that they were dealing with within the pandemic. And I think it's even worse now, you know, we have communities that. Have, you know, WiFi internet access and some don't. We have communities that have access to public transportation and some don't. And so we can't just have like. A hard line of how we engage, which is why flexibility is really key, because you just don't know what someone is dealing with or going through. And the more opportunities you create for people to have access to participate, it's amazing what is being shared at the table when everyone is able to have a voice in that space.
Courtnie - 00:13:59:
Couldn't have said that any better, Maya.
Dietre - 00:14:01:
Anyone want to add about some things that make it hard for people with living experiences to join a maternal health task force?
Megan - 00:14:10:
I just think general, like... Feelings of inadequacy about ourselves or being afraid that we're going to be seen for the flaws that we have or the things that we're struggling with can be really scary for someone to put themselves out there.
Dietre - 00:14:28:
Absolutely. So that feeling of fear, am I going to be enough? Is my voice going to be enough? Like, what do they, what do they? Care about what I'm going to say? How can it make a difference? Right? So I think after five years of knowing now, you know, the difference that your voice can make, what would you, I'm going to give you a chance to pause and think about what would each of you say to yourself five years ago? To respond to what Megan just said, that, you know what, your voice is enough. What would you say to that? Go back five years, that person years old about your voice is enough. Use it. What would you say?
Courtnie - 00:15:08:
I would tell myself that it's funny that you say that, like, because I go through this all the time. I would say just that you are enough. Your voice deserves to be heard. There are people that want to listen and you deserve to be in that space, in this space.
Maya - 00:15:25:
Yeah, and I would add to just breathe and to know that. Everything is going to be okay. And that you're here because you have something of value. Like Courtnie said, like. What we bring to this table, we may not see the impact now, but generations after, it will live through that. It will be a continuous life cycle through that. So yeah, just to breathe. Just know that your words and your life is valuable.
Megan - 00:15:56:
Yeah, the challenge is part of the growth.
Dietre - 00:16:00:
The challenge is part of the growth.
Megan - 00:16:02:
If it feels uncomfortable, it's exactly what you should be doing.
Dietre - 00:16:08:
Okay. So there'll be some feelings of discomfort on as the person with living experience joins this maternal health task force. What can maternal health task force members do to help the living experience members to meet those challenges that they're experiencing?
Courtnie - 00:16:28:
I think it's important to have these groups led by people who are compassionate and, you know, are relatable. That's the great thing with having worked with RACE for Equity is that you all were extremely compassionate and allowed that space, allowed us time to breathe. And I see like that's one of the top things that I would say to have compassionate people leading these groups.
Maya - 00:16:55:
Yeah, picking off of Courtnie, I think it was helpful that... Even when we went with the other additional groups, someone was a mom or, you know, a caregiver. So it wasn't like we're all in a room outside of our core group with people who didn't understand. And so, again, it allowed that flexibility and understanding. If sometimes we couldn't fully be present on camera all the time, you know, and that I think is still a challenge for some. You know, now that everybody is back to work, it's still an adjustment. But our lives haven't changed. You know, we're still mamas and we're still going through a lot of these different challenges. So I think what Courtnie said was really helpful to, you know, just making sure that you have people who are empathetic and understand that this is the actual lived experiences that you're going to get when you're working with community in this way.
Dietre - 00:17:52:
So I asked you to speak to yourself. Is there anything you want to say to yourself five years ago?
Megan - 00:17:59:
Jump out there and try. Jump out there and believe in yourself.
Dietre - 00:18:03:
Thank you so much. Now, as we close out, I'm going to invite you to speak to those folks in the audience that you can't see. You don't know that they're there, but they are the chairperson of a maternal health task force, hopefully in your state. So if you had the audience and someone with the living experience will have this audience. If you had the audience of the chair of the maternal health task force in your state, what do you want to say to them? Look at the camera and tell them or lean into the microphone and tell them what do you want them to know about that person with living experience that's coming on their task force?
Maya - 00:18:42:
I would say that the person coming in with lived experiences. It probably should be the most valued person at the table. They should not be an afterthought. They should always be, like as Courtnie said, be a part of the process. Because again. They have walked living in their own shoes of the things that, um, You are trying to promote and implement. And if you don't have community buy-in, the community will shut it down before you even roll it out. You know, and if we are really trying to improve maternal health outcomes, it should not just be driven off a bunch of data sets, but actually what people say they want and need. Versus based off of assumptions. And then knowing that if you go to the people first, the data will improve. The data will also show you things that you didn't even think about. But I would really love to see community members be at the beginning of the process instead of at the end or as needed.
Courtnie - 00:19:54:
I say that's where we end right there. That's what Maya said to everything.
Dietre - 00:20:01:
Megan, what would you say to the chair of the Washington State Maternal Health Task Force?
Megan - 00:20:08:
The same thing Maya said, you've... Got to value the people with lived experience, I believe as much as you're valuing the people with the higher level degrees, because... Persons with living experience are living it and seeing it and can offer a lot more insight as to what's going on and what possible solutions might be.
Dietre - 00:20:37:
Thank you, Megan McKenzie. Thank you, Courtnie Carter. Thank you, Maya Jackson, for joining us on the second edition of the podcast. Engaging people with living experiences in your maternal health task force. We look forward to our next conversation where we'll be able to talk more about how a maternal health task force can actually develop an environment where people with living experiences are comfortable and listened to. We look forward to seeing you then. My name is Dietre Epps and have a great day.