Racial Inequalities and Healthcare Disparities: Spotlight on the Family

By Nanfi N. Lubogo

You cannot talk about health disparities and inequalities in healthcare without talking about and addressing racial and social injustice. The very inequalities that we know exist in healthcare today were rooted hundreds of years ago due systemic racism against African American and Native American communities.

Over 150 years later, communities of color still have to deal with structural racial practices across the U.S., in neighborhoods where air quality is poor, prevalence of food deserts where access to fresh fruits and vegetables are scarce but fast food value meals are plentiful and with more liquor stores than quality healthcare providers. According to the Centers for Disease Control (CDC), Non-Hispanic Blacks bear a disproportionate burden of preventable disease, injury, death and disability leading to higher cases of diabetes, high blood pressure, obesity and heart disease. In children; asthma, behavioral and neurological conditions from environmental exposures to lead and dirty water. These health issues are contributing factors to the poor health outcomes in black people who live in what we now refer to as underserved/underrepresented or marginalized communities. Other socio-economic factors such as education, employment and income also contribute to racial health disparities further complicated when you add a global pandemic such as COVID-19, an economic downturn and the current civil unrest for social justice that has crippled our nation.

As a black parent and family leader that runs a parent support organization for families and children and youth with special healthcare needs, I have not only heard so many horrific stories of racism, inequality and injustice but dealt with them myself. Stories of a black mom of a child with sickle cell who goes into crisis and shows up at the Emergency Department only to be accused of seeking narcotics. A family of a young man diagnosed with autism who needs emergency assistance but is afraid to call 911 for fear of an escalation leading to arrest or even worse, shot and killed. Or stories like mine (and many others) where mothers of color are dismissed or even ignored by healthcare providers for being too outspoken, asking too many questions or simply put – seen as the stereotypical angry black woman- when advocating for my child.

I was privileged to be able to act as the advocate for my daughter with special healthcare needs when she was just 2-years old. I became a sponge for information to help my daughter. Attending every meeting, doctor’s appointment, and training about her diagnosis.

My business was and is to help my daughter. I was always among a small group of parents and very quickly realized I was often the only parent or sole person of color. It was a lonely place. It almost felt like I was the “token” or there to “check a box.” I knew then that my duty is to speak for those who are not able and bring their experiences to the table where decisions are made. To that end, I have spent the better part of 20-years fighting for my child and other children and youth with special health care needs. I use my voice, experience, and influence to ensure the needs of people of color are addressed and that their voices are represented at the table from decision making all the way through to implementation.

Representation matters. We are not here to fulfill the status quo or to check a box. We are here to ensure structural change happens. Family engagement matters, but only if it is meaningful. People from marginalized communities bring important life experience to the table and given the chance can be powerful and effective partners in dismantling racism, bias, and health disparities. As is said by disability advocates, “Nothing about us, without us!”

Nanfi N. Lubogo is from Cromwell, CT and serves as the Co-Executive Director for PATH Parent to Parent/Family Voices of CT (PATH/FVCT), a statewide parent support network for families of children and youth with special health care needs/disabilities. She serves on various committees, councils, and boards both in CT and nationally. Her current appointments include the CT Emergency Medical Services for Children (EMSC) Advisory Committee & Family Advisory Network. She represents Consumers on the National EMS Advisory Council (NEMSAC) and is the Vice President of National Family Voices Board of Directors. Mrs. Lubogo is a Maternal and Child Health/Public Health Leadership Fellow (MCH PHLI) and Partners in Policy Making Graduate.