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Here’s part two of my conversation with health equity activist Danise Wilson. We pick back up after she shared her story and what drives her work in birth equity.

JK: I’m sorry you had to go through that. I know so many women, and a number of black women, who have had tragic and awful birth experiences. One of the things I’ve seen you do throughout the many years we’ve known each other is embody activism. I didn’t know you well in high school, but I remember you ran for class officer, right?

DW: Yes!

JK: I remembered this about you. You were always moving with an eye on the ball. So what keeps you going and what does self-care look like for you when you’ve been doing community care for this long?

DW: I think the thing that keeps me going is that I am still entrenched in the community. Again? seeing the need is hard to ignore. The other thing that keeps me going is getting to get a glimpse from a decision maker standpoint and to understanding just how difficult it is to untwine those knots in the system. I know that navigating hardships get easier once you receive a certain level of privilege. Being invited into spaces, having different titles, affords me access. I know who and where to send an email to get the outcome I would like. It saddens me that most people can’t do that. When Sydney has a problem in school, she has a mom that can take off of work, go to the school, sit in the office for an hour and a half and handle whatever needs to be handled. Other parents don’t have that flexibility and time. So I show up for those who can’t and try to change things for those who need it. I know how I would want people to treat my mom, my children or family if I wasn’t around. I shouldn’t need a title or any notoriety to have these basic needs met. Unfortunately we do.

Being able to see both sides keeps me going, but personally that has burnt me out at times. You can’t catch all the rain. I take this work so personally, I try to catch the rain. Rain that falls at work in the community, nationally. I’m compelled to. During the protests (after the murder of George Floyd in 2020), my husband had to come and get me. I need that stop point.

JK: It’s good that you have a partner that holds it down like that. I’ve got one of those now. He’s like, call me if you get arrested, otherwise I’m here taking care of the kids.

DW (laughs): Right, that’s what we need! That’s how I keep going. And I guess there’s this little optimistic piece of me that says, you may not be able to change it all, but if you can change a piece, it will ripple out.

JK: I was talking with Heidi Romer a few months ago for this blog; I know you know Heidi, and we were talking about how you can’t have thriving communities when they aren’t even surviving because they are actively suffering. And in Buffalo, especially for our Black and Brown communities, many people are suffering at the hands of the system, of our local government and our state government who are not doing enough. There has been so much trauma, so much tragedy, and this assumption that there is a well of resilience that people can keep pulling from. And it’s the same systems-change needed that community activists and nonprofit leaders have been talking about now for 10, 15, 20, even 30 years. I’m always interested in hearing from those people that are knee deep in it, how do you stay in it this long?

Danise and staff at ENAHEC

DW: I tell anyone who comes to ENAHEC looking for a job, you can come for the experience, you can come for the money, but this work has to come from here (points to her heart) or you will be miserable. This heart work keeps you up at night, makes you not be able to enjoy a shower because your wheels are turning, interrupts vacations ... is that healthy though? Should we learn to create more boundaries for ourselves? Absolutely. But it’s almost as if you can’t help it. And even you, I’m looking at your transition into the work you are doing now, you’re still helping, just in a different capacity.

JK: Right, there are so many leaders I know transitioning out of local nonprofits right now because we all got burnt out. I think the current way that nonprofits are operating, at least in the City of Buffalo, and probably across the country… it’s not sustainable. And it’s mostly women, and a lot of Women of Color, leading these organizations. And it’s not sustainable for any of us. So that was part of my decision. How can I continue to work with the organizations I care about but in a different way? Last question I have, are you still running your scholarship program and if so, can you tell me a little bit about that?

DW: Yes! So the Hamilton-Wilson scholarship is still going! That was created for MPH and MSW students of color attending UB because there are few and far in between. We are trying to support them throughout their journey and getting through those masters programs. We were very fortunate to get a pretty big donation come in but we have much more work to do. Since we’ve started, we’ve given over 8 scholarships. Each student getting $1,000 and we still have money in the bank. Greer Hamilton, my counterpart, just went through her PhD program so we are riding out the savings while she is finishing school. Our dream is yo one day have an endowment where it's constantly growing and to grow a substantial donor base. Actually, one of my biggest personal goals is That one day I will become a funder to non profits. I’m going to make sure they have money for capacity, time and flexibility!

JK: I know you are going to give out that operating money that no one else gives out but everybody needs!

DW: Listen! It’s crazy how these funders work. But I’ve been working on that too. I’ve been trying to work with the funders, especially our local foundations, to say hello, you guys are doing this wrong.

JK: One of the things I hope my children see, from the ways we’ve raised money for the

community through my daughter’s annual lemonade stand to benefit the Mercy NICU or through the memorial fund we’ve given out in their dad’s name, is that they can do this too. Because we come from a working class background where we didn’t have those models. My parents gave money to church but money to nonprofits and grants? That was seen as a thing only for wealthy people. So I wanted them to be able to see that you can actually impact your community by giving even a small amount of money to a nonprofit. Because for small nonprofits, they will make that money go a long way. I want to show them how we can crowdfund to do that and still do good work. I’m sure when you set out to start a scholarship fund, people asked how you were going to really do that. I know when we started Mark’s fund, everyone was like, you’ll be lucky to raise $400. And we raised $4,000 and sent ten kids to camp that first summer. It wasn’t that hard because we had a community that believed in us.

DW: Exactly!

JK: I just wanted to end there because it’s another amazing way you’ve been lifting community as you go. Thank you for the impact you are making. You’ve been such a blessing to the community and I wish you all the best as you move into your new role.

Interested in supporting the work of the Erie Niagara AHEC? Read on here for more information. You can learn more about the Hamilton Wilson Student Assistance Fund here.

Danise Wilson (she/her/hers) has worked in health equity and education for over 20 years in Buffalo. She is “a mom of 5, a wife of 1, and an advocate by nature.” She has recently transitioned from eight years of service as the Executive Director of Erie Niagara Area Health Education Center and will be moving into the national spotlight where she will continue to fight for reproductive justice.

Danise Wilson

JK: Hey Danise, thanks for being here with me. Tell me about the community you serve as you define it.

DW: I was born and raised on the east side of Buffalo, NY. I have witnessed and identify with the many hardships that this community faces. And specifically for Black and Brown people. Housing, food and healthcare access, road and sidewalk conditions, quality education and violence. All of these things are occurring around us and they impact our day-to-day lives, our likelihood to further our education and career, and our ability to live a fulfilling life. It is frustrating.

As I was progressing in my education and my career, I knew many who had the same dreams and goals as I did but faced so many challenges that their dreams were deferred. It was very clear that the community that I needed to focus on was my own! It was also clear the true issue, in my opinion, (and it’s not just in Black and Brown communities) is poverty. Poverty is impacting communities all over this area …so how do I define community? It’s all of these individuals, who live around me, who are impacted by the same structural inequities that exist for everyone.

JK: We’ve both worked in and around health equity for a long time. Most recently, I was on the food justice side and before that I was in child welfare and did direct service work with domestic violence and sexual assault survivors. And in my work, it’s always been a question of who has access…access to health, access to resources. Who is being denied access and care based on skin color, class, or immigration status? So one of the things I’ve been most interested in as I’ve followed your career, was the work you are doing in birth equity. I see how deeply passionate you are about it. How you light up when you are doing that work specifically...That’s where you seem most at home in your work. Am I wrong?

DW: No, you are right! There are two places in my work that I love, love, love: the babies and the youth. The Birth Equity Project started after a group of doulas and I were discussing their training and their experiences as a doula. I immersed myself in the profession and training. The more I learned the more glaring were the racial, income and social inequalities that existed in the local doula community. I could easily see how many Black and Brown low income mothers would be excluded from having access to these services. For example, private doulas typically charge approximately $1,500 a for services. Unfortunately most underrepresented community members do not just have an extra $1,500 to spend and are often relying on what their Medicaid services will provide. I knew there was something I could do to help. The more I learned about the maternal health crisis and the national impact it poured fuel on a fire that I couldn't imagine.

When I had Sydney (fourteen years ago), I had to come back to the hospital just three days after I was discharged. I was rushed in because I was having a heart attack. They gave me a 40% chance of living! After labor, I had been trying to explain to my nurse that something was wrong. I really tried to explain to them that I didn't feel well. I was retaining fluid and I knew something was wrong. I could not walk. I could not fit in my shoes that I walked into the hospital with. I couldn’t fit into the clothes I was brought into the hospital with. I literally weighed more leaving the hospital than I did after having my daughter. The guidance they gave was just to drink water. So I did. But the fluid wasn’t coming out. Three days after I was released I collapsed on my stairs. I could have died that day. I had a forty percent chance of seeing my husband again, of seeing my kids again, of raising my baby, Sydney. It was so traumatic for me.

Danise with her family

Until I began this work a few years ago, I carried this trauma. I did not know this was happening to millions of women, across the country and the world. I think Serena coming out with her story, and other celebrities coming out with their stories, made me want to not only tell mine, but prevent this from happening to others. When NYS instituted a Doula pilot program with doulas, I felt like I needed to help. It aligned with our mission and we were willing to take it on. Working with our partners we’ve been able to transform the way doula training is done, the way doula training with Medicaid moms is done, and I’m very intentional about doing this with Black and Brown moms because this is who the crisis is impacting the most. Not that I am leaving out others, but we know that Black and Brown moms are dying at 4-5x their white counterparts and it’s not getting better.

We also work with providers. Hospital systems know what’s going on here! Somebody needs to ring the alarm. If it means I elbow my way into spaces that had not been breached before, so be it. If there is a meeting, I’m there. If it's a panel, I’m coming. Because I need them to know, at some point, yes, I want to increase the number of doulas in this community and yes, I want them treated equitably, but I also want them (the hospital systems) accountable. This is where the activist piece comes in. The “Who Am I” comes into my work. I am always going to fight for those who can’t fight for themselves in these spaces. I will always be a voice for those who haven't found theirs yet. I'm going to fight for the women who have never heard of doulas. Provider education is very important as well. There has to be a level of accountability. Because at some point you have to listen to us. Y’all gotta stop killing us. This has to happen!

Danise and moms with the Birth Equity Project.

JK: Right! And there has to be leadership there. It’s really easy to say your system is accountable but you don’t have to say you’re personally accountable and you don’t have to be the person that steps up and changes things. I was thinking of Fannie Lou Hammer while you were talking. If they don’t give you a seat at the table, you go get your folding chair…

DW: Right!

JK: So you find your way in there and you make sure your community is cared for, and in doing so, you are healing yourself too.

DW: Absolutely! Absolutely! I also get to tell my story. At the time, I had Sydney, I had four children before her but each birth is different. Each birth experience is valid. We educate each of my moms. And that’s where we are going now with the Birth Equity Project; working really closely with the moms. I know you can only do what your funding allows but if I could recruit 2,000 mothers into this project, I would make it so in a heartbeat. We wrap around them and address all of the issues. I know, as a teen mom, as a very, very low-income household with several kids on social services, I know all of those barriers that they are trying to overcome daily. I talk all the time about how I had to bring my kids to sit in class with me in college and how I experienced a lot of prejudice and abuse in the education/academic realm because I had kids. You cant stop there though. You just have to figure out a way to push through those barriers. Because you are trying to change. You’re trying to make a different life for your children.

Come back next week to read Part II of our conversation which digs into the personal way Danise and fellow activist Greer Hamilton have lifted up aspiring young public health workers of color.

Diana Patton (she/her/hers) is a veteran and transgender activist currently residing in Hamburg, New York. She is a co-founder of the We Exist Coalition as well as the Commander of Veterans Defending Democracy, an affiliate of Defense of Democracy. I had a chance to sit down with her in late May to catch up on the myriad of ways she is building community.

JK: Hi Diana! Thank you for making the time to talk with me today. I have so many questions for you! First off, I wanted to hear more about your work with the We Exist Coalition.

DP: I started We Exist with three other trans women: one from the great lakes region, and the others down in Jamestown. We started the coalition when Trump became president because of the anti-transgender stuff he was coming out with, mostly dealing with the military. We thought it would be a great way to combine our activism with advocacy across the state. It’s smaller now than it was a few years ago, but we still show up to teach people about trans issues. Anything that anybody needs.

JK: You are also involved with Defense of Democracy, which is a national group I believe that defends inclusivity in public education. You organized a local chapter of it, yes?

DP: Yes, I am the Erie County Chapter Chair for Defense of Democracy and I am also the Commander of Veterans Defending Democracy, which is an affiliate of Defense of Democracy.

JK: How did you get your start in activism?

DP: When I first came out as trans, I started going to support groups. I’m someone who likes to learn everything I can about what I am going through. So I started learning about transgender issues, reading medical journals, law journals, learning about all of the struggles we go through. I was reading everything I could get my hands on. When I was attending the Spectrum Transgender Group of Western New York, the two co-chairs were ready to step down, as they had been leading it for six years. Then they just appointed me and another trans woman as the chairs, and that was what got my start! Frank Goldberg (who has been missing for about eight years now), then Ari Moore, Patty, and Brian Ball of Stonewall Democrats, as well as Kitty and Cheryl (the first two lesbians to legally marry in New York State) started teaching me how to do all of this (activist) stuff. I put together my first panel when I was still a student at Hilbert, around 2010.

JK: You and I met last year when there was a contentious school board race in Hamburg. One of the things I really appreciated about you is that you show up for youth in a way I haven’t seen a lot of other activists do. You were at every school board meeting in Hamburg and Orchard Park when LGBTQ youth were put on the defensive from adult groups who organized against the districts’ gender-inclusive policies or who tried to silence queer authors and queer-centered books from school libraries. What do you see your role in paying forward mentoring and your work with young people?

DP: I always tell youth that they can contact me at any time, day or night, 24/7, whenever they need anything. Whether its advice, or just to talk or to learn about the mistakes I’ve made or the wins I’ve had. I don’t really like to be recognized for this work as I believe everyone should be doing the work. Plus I’m disabled, so I can spend a lot of my time doing it more than most.

JK: As a parent of a transgender child, I am always trying to balance how to both teach my child to stand up and fight for their rights AND how to support their mental health. We live in a country that is passing a record number of anti-LGBTQ laws, that is attacking children for being who they are, and attacking parents and providers for affirming care. Do you have any advice for parents like me on how you find that balance of protecting our child’s mental health when they have to regularly deal with people calling for their invisibility at best and their eradication at worst?

DP: Find fun! Find laughter. Find some way to take a break from everything that is serious. You have to at least make time, and you’ve got to make it about yourself, not just about the trans person. I’m constantly telling both parents and other activists, the best advice I can, which is to go and take a break. Because this stuff can get addicting. It’s not a bad addiction but it's hard to let it go. It can take you down rabbit holes at times. It can get you so angry. But you don’t want to do this from a place of anger. You can’t. Then you start attacking people instead of the issue. And you don’t want to attack people.

JK: When I saw you speak out at the Orchard Park School Board meeting (in January 2023), you were so respectful with the “other side.” I see how you work to try to change people’s hearts and minds. And I know that their vitriol has to feel like a regular attack on your personhood. How do you cope with that? Are there other things (fun being one) that help you reset and soothe?

DP: This is reset for me, because I also have PTSD (post-traumatic stress disorder), so this is kind of my therapy. To help helps. It helps my depression and the things that bother me. Nine times out of ten, you can’t help someone. Either they take the help or do the work. But it's that one person you help that changes everything and invigorates you to keep going. I also garden, crochet, play video games, watch movies. If I’m having a bad day, I’ll turn on Netflix and find a comedian to watch.

JK: One of the things that I’ve seen in my activism is that thriving occurs both alongside suffering and it is antithetical to activism, because if we were thriving we won’t have to be out here fighting the good fight. But there is always some oppressive force trying to stop us from thriving. So what would it look like for your community to thrive…

DP: For us to be left alone. That’s it. We have enough problems day to day to deal with. Right now, I know of two trans students, who are being attacked in our area and that just drives me nuts. I got to meet both parents of both kids and I’ve gotten them contact info for support. It’s up to them to follow through. So just leave us the hell alone. Let us be who we are going to be. This goes beyond acceptance. I don’t care what your beliefs are. You can hate me as much as you want, but just respect me. Using pronouns is about respect, it doesn’t have anything to do with your beliefs. I don’t care if you believe that I am a she but that’s respect to call me that. If you’re not going to respect me, how am I going to talk with you…

JK: I heard the speech you gave at UB when Michael Knowles came through and the message you included about American freedom. I know I don’t have to tell you this, but when people claim to be speaking on behalf of people’s freedom while actively suppressing other people from being free, the hypocrisy of that feels…

DP: You don’t get to hijack patriotism! Matter of fact, people like me, you’ll hardly ever hear me beat my chest about being a patriot. Yes, I’ll wear my veterans-wear because it's part of my history, it’s who I am, but I’m bad about remembering to put out my flag. People who bully people will raise that flag and fly it. If you are not for ALL Americans, how can you even begin to fly that flag? Historically, we have been a very oppressive nation, but it's the ideals that we can do better. That’s the #1 American ideal. That’s why our constitution is better than other constitutions. Because it can be altered or changed.

JK: Thank you Diana for doing what you do and for your time today. I appreciate all the ways in which you serve your fellow citizens.

Read the oath taken by Veterans Defending Democracy and be sure this pride month to support our local agencies fighting for LGBTQ rights. Join me as a monthly donor to uplift GLYS and check out the Pride Center’s upcoming events. Remember that Pride Month is more than “Love is Love” or “Love Wins.” As Diana has reminded me, the first Pride was a riot.

Photos provided by Dianna Patton.

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