It has been three months since my mother died. Through the deep feeling of loss, I am learning that the process of grieving is a continuous reflection: a meditation to pull meaning, hope, joy, wisdom out of memories that are still sharp and vivid.
More than anything, I am left with a profound sense of gratitude. That she shared, loved, and praised so generously. That she rejoiced in giving, embodying her birth name Joyce. I feel gratitude that she lived a full and glorious 88 years, educating scores of children as a middle school teacher, enjoining her many friends to “Keep hope alive and keep your spirits up”, encouraging her neighbors, church members, and relatives with gestures large and small of love and acceptance. I feel immense gratitude that she left to this world friends, nieces, cousins, children who still continue to support each other and strive to carry on the essence of her soul. She never forgot a birthday — celebrating each with elegantly crafted cards adorned with exquisite calligraphy and thoughtful words. Her retirement was spent as a prayer to life: gardening, traveling, and loving three grandchildren. For these gifts, I am thankful.
She indeed gifted us many lessons. The way in which she died — to be specific her last few weeks in the hospital — is one among many; a kind of charge, a parting story to be unfolded by us the living to survey, understand, and learn from in order to improve and uplift the lives of the next generations. This particular lesson is on how health is provided and not provided to women of color; it is about how a system fails to understand and value the lives of Black women; it is about how to destruct and then rebuild a racialized hierarchy of who lives and who dies.
This life life lesson from Joyce is to figure out how to center the health and well being of Black women.
Let me explain. My mother had to be taken to the emergency room after dealing with stomach pain that had gone on for weeks. Like many Black women of that age, she had feared going to doctors — news is often bad, and for Black women born in the 1930’s the remembrance of Tuskegee experiments, segregated hospitals, visits to doctors who could not be bothered to appreciated and respect Black women’s bodies play into the oft-quoted “anywhere but the doctor” sentiment. There is a podcast How the bad blood started, that sets this in historical context.
When my mother arrived at the hospital, I don’t doubt that the immediate emergency surgery — removing a section of her intestine — was performed well. American excels at emergency and trauma response and has probably mastered what to do with Black bodies in physical trauma. You see this approach to care in the policies that govern many communities of color.
The tripartite system of the IHS, tribally operated clinics, and urban Indian clinics represent a unique ecology within which American Indians seek help for physical, mental, alcohol, and drug problems. This is particularly relevant when discussing health care challenges for American Indian elderly since the emphasis of the IHS system is on acute rather than chronic health problems
From Understanding Racial and Ethnic Differences in Health in Late Life: A Research Agenda. National Research Council (US) at https://www.ncbi.nlm.nih.gov/books/NBK24693/
In the days that followed — as my mother tried to recover from the stomach surgery — I began to notice a pattern. The Black nurses seemed to spend more time, ask more questions. One of the Black nurses braided her hair, spent the time to turn her gently, administer the massages to keep her muscles moving, southed her mouth with water to keep the dryness in check. They took the time to perceive and understand their patient, to build the bonds of knowing and trust that would facilitate care. They took the time to recognize her humanity and enter into the process of healing. The White nurses seemed indifferent at best. I noted in my journal trying to disbelieve my eyes.
The surgeons — they were all white — offered curt responses to our questions. When my brother and I asked why duplicate tests had been run, why we were not consulted about a procedure, we were met with defensiveness. You can’t imagine the the restraint required of a data scientist not to resort to physical violence when they dismissed and told not to ask questions, when their mother’s health is at question.
Along with one of the Black nurses, we — her children — figured out that she had likely had a stroke; that sometime on the Tuesday of her second week in the hospital she had lost a lot of the functioning on her left side. As she began to fade, we only got partial answers from the doctors. What was a minor stroke one day, was significant the next. She developed a throat infection, she began to fade. Again, it was the Black caregivers at a hospice center that insured that her final hours at home were calm, prayerful.
Three months after my mother’s passing, we are still consulting with Medicare and the insurer on procedures that may or may not have been necessary or duplicative.
Everyone will acknowledge that the U.S. medical system is in crisis. It assumes that cases will be resolved through litigation — so stories of mothers falling through the cracks of overworked providers are common. Billboards of malpractice attorneys feature prominently in Atlanta — they are on buses, on the radio, and their ads will track you on the internet. Yes, I get that, but there are other factors at work.
In this Longreads piece, Danielle Jackson talks about the mortality crisis facing Black mothers. Lest you think this is just about poverty and access to adequate health — it certainly is a factor — please remember how Serena Williams nearly lost her life in childbirth. Don’t take my word or those of my mother’s — physicians do not see Black women, they are not trained to see Black women.
It goes much, much further. Georgia’s governor proposed this year to cut funding for research aimed at improving maternal health for Black women. A study came out after my mother’s funeral which highlighted how algorithms used in hospitals to allocate care showed bias against Black patients. We are apparently just not worth saving. Further, if you are a Black scientist interested in doing research on how to improve the health of Black people, it will be harder for you to obtain research funding and obtain tenure.
The figures from the U.S. Centers for Disease Control tell bittersweet stories.
Thankfully, the racial disparities in mortality have decreased — from a five year gap in life expectancy between Black and White women in 1999 to a 3 year gap in 2013. But despite that drop, the gap seems to have been been constant over the first part of the 2010s. Further, disparities in the number of deaths around childbirth and Alzheimer’s disease have increased.
The day after my mother’s passing I learned that my oldest son and his companion were expecting a child. It brought joy to our family in a dark time, but there yet we have to go forward in the knowledge that his partner, and their child are at higher risk giving birth in the U.S. than in the Caribbean. They live in Illinois, where the Black infant mortality rate is 12.8 — higher than that of the Virgin Islands, Barbados, Granada, Saint Lucia, Antigua, and the Bahamas. In London, the infant mortality rate among mothers of Caribbean descent is 8% — although this is twice that of the general population it still gives children born to Black mothers better odds than Chicago or Atlanta. In other words, in nearby places with Black populations of 90% or greater, infants are faring better. There is nothing inherent about Black children that predisposes them to die like this.
As I contemplate the seriousness of these trends, I recall my grandmother who was lost to Alzheimer’s. As we sat planning the funeral, we received a visit from one of Mom’s college friends who was going through the early stages of the disease. She had been brought to our home by a friend who had explained that they were trying to participate in a clinical trial to address the low participation of Black women in experimental Alzheimer’s therapies.
But there is something more in these figures as I think about it. Does the United States preserve this hierarchy of healthcare because it would undo axioms of existence? As the Center for American Progress stated in this 2018 report
That is, the social and economic forces of institutional racism set African American and non-Hispanic white women on distinct life tracks, with long-term consequences for their health and the health of their future children. The experience of systematic racial bias—not race itself—compromises health.
Exploring African Americans’ High Maternal and Infant Death Rates, Cristina Novoa and Jamila Taylor
The racist hierarchy of how health in the United States is done is apparent in so many ways.
Among the Indigenous peoples of the United States, 30% have no access to health insurance, among African Americans, the uninsured rate is 12%. What are the lessons to be learned from the relative resilience of LatinX citizens? Are the racial categories of the 19th and 20th century, constructed out of a context white supremacy appropriate for the challenges that are faced in the 21st century? What are the objective ways in which these disparities can be effectively addressed?
There are people that are wrestling with these questions. Healers like Brittany Kellman are trying to create health centers that actively engage with the unique health situation of Black women. But the barriers of access, physician engagement, perception, and systemic pressures are huge.
Ultimately, radical change in healthcare options depend upon the willingness of government and systems to address disparity. The access to health and being should not be left to the luck of the draw — where you live, who your parents were.
In my desire to be an optimist, ideas and thoughts on addressing the problem:
- If you’re African American, talk to your friends and loved ones about health. Discuss what’s worked, what hasn’t. The challenges you’ve faced. Document your interactions with the healthcare system. Knowledge is power, sharing is love.
- Find the healers, providers, institutions in your community that care and are invested in improving the health of Black people generally and Black women in particular.
- Encourage your mothers, aunts, daughters, partners to get care from the providers that care. Work with each other to take ownership of care, health and healing.
- If you’re a healthcare professional, it’s time to demand a rethinking of how nurses and doctors are trained to interact with their patients. You cannot save our lives if you cannot appreciate our humanity.
- Regardless of your political affiliation, you can work to ensure that everyone in the U.S. has access to healthcare that keeps them alive and well. Ask yourself if the county you live in ever worried about the cost of endless wars or drone terrorism.
No, I have not solved this gem of a puzzle that Joyce bequeathed. It is one of the many meditations of grief.
