Melinated Moms: Advocating for Mothers in a Health System Where Skin Color Defines Experience
Sexism is unbearable. Racism is unacceptable. And when they happen together, it is an alarming sign of humanity’s failure to be inclusive. Such a situation, where individuals experience low-quality healthcare, calls for immediate remediation. Jaye Wilson, a nurse and a health equity advocate, answered this call by establishing an initiative called Melinated Moms in August 2017. The following are some narrative reflections from an interview with Jaye.
Why is health advocacy important?
Prior to establishing Melinated Moms, Jaye worked as a Nursing Operations Manager at Callen-Lorde, a community health center in Manhattan, for almost ten years. In her role, she was part of the alternative insemination program and helped LGBTQ families start the journey of parenthood. Her experience there opened Jaye’s eyes to the different stigmas attached to the LGBTQ community and how they hinder access to healthcare in a heterocentric health system. She learned that LGBTQ patients often cannot get adequate healthcare because healthcare providers may find it challenging to treat patients if they do not agree with a patient’s sexual preference or cannot hold conversations on topics such as menstruation with a transgender patient who does not identify as a woman. It is such spaces of uncertainties in healthcare where extra effort in the form of advocacy is needed to ensure each patient and their needs are understood. Jaye came to value the importance of advocacy and why representation matters for groups who are disproportionately disadvantaged — such as women of color.
When she shifted to nursing school, Jaye realized that students are taught how to treat a symptom, what they are supposed to look for, how to get through solving biological problems, and how to discharge the patient. They don’t necessarily learn the humanized part of healthcare in a formal way.
The Beginnings of Melinated Moms
The next step of Jaye’s journey was when she became a single mother with limited support to take care of her children, including one who suffers from a chronic health condition. Jaye had to be absent from work more often to take care of her child and eventually quit her job. This situation made Jaye wonder what other working single mothers did to navigate dual roles as caregivers and breadwinners. This answer became the seed that evolved into Melinated Moms.
Jaye describes Melinated Moms as a “membership-based community organization that supports moms and women of color through social engagement events.” Her vision is to create a “Facebook” for mothers and women, culminating in a global network of women from around the world having open discussions on motherhood and learning to advocate for their own health. The organization also holds events for physical meet-ups. These curated events are centered on themes of health and wellness, nutrition and cooking, women’s empowerment, bonding with children, and fitness. Jaye expects to cover more topics in the future, depending on the needs and demands of her organization’s members. Alongside events, the organization’s cause is promoted through social media platforms including Facebook, Twitter, and Instagram.
Jaye, a native of Buffalo, New York, currently resides in New Jersey where she holds most of her events. Her events saw an increased attendance of mothers which, according to Jaye, is a sign of encouragement but also a concern. She sees more and more mothers coming to her events to talk about the challenges they face and reflect on how widespread and dire the issues that impact women of color are. Jaye realized that many mothers are in an “isolation mode,” not only facing health issues but also dealing with lack of support for themselves and their children. They struggle with thoughts that their situation is uniquely tough and shy away from openly sharing their motherhood struggles for the fear of being labeled as “bad moms.” They feel that once you become a mother you are expected to know everything about raising a child. Women may not always feel the “motherly glitter glow,” which can often inspire feelings of guilt.
“What gets lost when it comes to moms is that we are women first,” Jaye explains. “Once you become a mother, your responsibility is to the child. But you still have things you go through just as a regular person — such as taking care of your reproductive health, figuring out who to talk to about depression, and finding someone to lean on when you need support for your child and their special needs. You as a person must be well enough to take care of your child.”
Melinated Moms: A Safe Space for Mothers
Melinated Moms aims to help women, and particularly women of color, come out of isolation mode, relate with other mothers who share similar ordeals, and tackle mother’s guilt. A woman, upon becoming a mother, has to make sacrifices whether she decides to work or stay at home. Here in the U.S., Jaye points out, maternity leave is determined by the employer and not by the government. She knows young people who delivered babies and returned to work two weeks later because they could not afford to miss a paycheck. It can take a long time to heal from pregnancy, but in the U.S. there is often an investment in illness but not health, especially when it comes to mothers.
Jaye’s target groups for her advocacy work are mothers, women of color, and gender minority groups such as lesbian and transgender moms who are at a disadvantage in the maternal health landscape. Melinated Moms’ events focus on boosting participants’ self-identity as mothers. Jaye describes her events as “inclusive — where the audience comes from diverse backgrounds“ but it primarily comprised of black/Hispanic mothers aged 21 to 45 years old.
Frustrations of Black Mothers in the U.S. Healthcare System
Women of color experience health service discrimination not just in maternal health, but also for other women’s health issues. One of Jaye’s friends, a woman of color, suffered from polycystic ovary syndrome and experienced excessive bleeding during her menstrual cycle. She became anemic and required a blood transfusion. However, when she came to the hospital, the doctors on call decided not to give it to her despite her primary doctor’s orders. Besides racism in healthcare provision, Jaye explains, there is generational mistrust of the health system amongst people of color in particular because they witness the unpleasant experiences their families go through in seeking healthcare.
One of the most popular events organized by Melinated Moms covers the topic of Childbirthing in Communities of Color and is structured as a moderated panel discussion on maternal health. According to Jaye, many women do not have the choice but to deliver through C-section. In the U.S., the C-section rate is 32 percent — significantly higher than the WHO-recommended rate of 10 to 15 percent. The C-section rate for women of color is 35 percent — the highest for any group in the country.
In Jaye’s experience, most women are not even aware of their delivery options and are unable to advocate for natural birth methods. Women with language and cultural barriers face an additional disadvantage when navigating the healthcare systems in the U.S. Healthcare facilities may have the ability to provide bilingual services to their patients, including pregnant mothers, but they often show much resistance in providing these resources.
Jaye’s personal experience when she was pregnant and being rushed to the hospital in an ambulance is also telling. She recalls that the attendant in the ambulance talked to her in a disregarding manner until she told ambulance staff that she was a nurse, implying that she had the medical knowledge of what was happening to her at the moment. Unfortunately, she gave birth to a stillborn baby and was in the hospital for five days. A few months later, she received a bill for $40,000 for the medical event. Insurance denied paying because she did not get a preauthorization for coverage. Jaye was confused about how she was supposed to know that she was going to have a stillborn baby and hence get any preauthorization. That wasn’t the plan. She had to fight with the insurance company for almost six months for them to cover the bill. This experience prompted Jaye to reflect on how challenging it must be for mothers with no medical knowledge to advocate for themselves. She wants Melinated Moms to be an empowering platform for women to acknowledge that they have the choice and the voice to make the most of available health resources.
Melinated Moms Strives for Diversity
Another Melinated Moms’ event, “You Cannot Walk in my Shoes,” is an extended event on motherhood, sisterhood, and womanhood where the audience discusses how women walk different paths and eventually meet in the center. For Valentine’s Day, the group organized “Massage, Makeup, and More” to celebrate self-care. The events gained a lot of traction and attention, including from other organizations that complement the work of Melinated Moms, such as pediatric care agencies, mothers who are entrepreneurs, and even swimming lesson groups.
Melinated Moms Going Global
The ambition of Melinated Moms is to expand globally. Jaye recently held an event for women of color in Toronto, Canada, one of the few countries in the world that provides universal healthcare coverage to its citizens. She recalls that many Canadian women shared their shock and the inequities of the U.S. healthcare system. Currently, there are Melinated Moms groups in Toronto, Dubai, the Netherlands, Australia, and the United Kingdom. Jaye envisions her organization being present in every part of the world where people of color reside, because in her words “racism wears different hats depending on where you are.” For example one of the Melinated Moms’ members in the Netherlands told Jaye that as a black woman, she doesn’t have issues with going to a store, but at school, her child often feels excluded from activities. She doesn’t understand why this happens, and she continues to try to comprehend and cope with her experiences.
Talking about the future, Jaye says that she is cautiously optimistic about tackling systemic racism. She knows that one has to be realistic and acknowledge that oppression is deeply embedded in our society. In her role as a nurse and patient care provider, Jaye was an active listener for the doctor and often noticed the differences in how providers respond to women advocating for themselves. She sometimes saw providers act more flexible in making appointment adjustments for white women and make more statements like “she is just complaining” or “she always has something else to say” about women of color.
“As a nurse, you can be the patient’s advocate and help the medical provider understand that,” Jaye shares.
The Journey Continues to Achieve Equity for Black Mothers
Jaye attends various conferences and events on black maternal health. At one recent conference on maternal health held in New Jersey, Jaye noticed that none of the speakers who talked about issues or programs related to black mothers were people of color. In Jaye’s opinion many health experts who talk about the experiences of a racial group that they do not belong to often overlook important cultural and traditional considerations. At Melinated Moms’ events, Jaye is mindful of the power of representation, striving to ensure that participants can relate to speakers.
Grassroots-level organizations and civil society can make an immense impact on macro-policies by amplifying the voices of minorities on overlooked issues. Jaye’s hard work is a testament to the advocacy efforts that individuals are undertaking to support women of color in navigating a health system that fails too many. She hopes that her daughters — who are her source of energy and are actively engaged in promoting the cause of Melinated Moms — will experience a more equitable healthcare system for all women as they come of age.
Naina Qayyum is a 2018–2019 Global Health Corps (GHC) fellow at the Greater Newark Healthcare Coalition in the U.S.
Global Health Corps (GHC) is a leadership development organization building the next generation of health equity leaders around the world. All GHC fellows, partners, and supporters are united in a common belief: health is a human right. There is a role for everyone in the movement for health equity. To learn more, visit our website and connect with us on Twitter/Instagram/Facebook.
