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.
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.
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!
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.