Black Women's HealthHealthcare Inequality

Centering the health of Black women

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.

Even with ACA, people of color — for Indigenous, African American, and Latinx citizens most acutely — continue to be mis-treated under the U.S. healthcare system. From Key Facts on Health and Health Care by Race and Ethnicity | The Henry J. Kaiser Family Foundation

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:

Mural near my grandmother’s childhood home
  • 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.

human rightsPhysicsSocial Justice

The stateless quantum mechanics of Abdus Salam

A month back I watched a documentary on Abdus Salam, the first physicist from Pakistan to be awarded the Nobel Prize in Physics. During his lifetime, he made significant contributions to quantum mechanics and was awarded the Nobel for his development of theory of the electroweak interaction.

You can watch it on Netflix, here is a trailer

He was from Punjab, the region of my partner’s ancestors. Lately my partner and I have been talking through this sense of statelessness as a way of being. When the partition of India occurred in 1947, her grandparents had to flee Lahore — her grandmother and perhaps millions of others did not survive. My partner has survived “migration under duress” from Tanzania to Botswana and living in the U.S. as a permanent resident under an “evolving/devolving” immigration regime. Traveling on an African passport has brought me new insights on what exclusion and racism mean.

All that said, I have a deep lived compassion and empathy for the Abdus Salaam’s of the world. Salaam was a member of the Ahmadiyya Muslim community. Pakistan refuses to recognize it as a legitimate branch of Islam.

According to the just passed Indian Citizenship Act, there are no Muslims in Pakistan who face religious persecution. So the defacement of Abdus Salam’s grave would, according to the act, constitute fake news. You can watch the Netflix documentary if you like and view a photo of the headstone. It is hard to square the fake news proclamation with 150 years of documented persecution.

The world seems in the process of canceling the right of refugees to basic claims on humanity. At this point, I don’t know what to do, other than proclaim, affirm and support the right of all humans to a country, to a place to call home, to the right to exist. Please remember Abdus Salam and the millions of people — mothers, aunts, children, scientists, cooks, farmers, hawkers and all — who today struggle to find a home.

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The Color Purple

Joyce Earl, my mother, left this world in her purple room at home surrounded by the people and things that she’d spent a lifetime building. Ultimately that is what we each aspire to — at the end of it all, a reminder of what our lives have meant.

The Color Purple was the last movie that I remember seeing on “the big screen” with her. I was reminded of that a few days ago as my family sat looking at reruns of Fresh Off the Boat. The music brought back memories — fuzzy at first and then like the opening scene of a movie, the memory went from an impressionist canvas to sharp focus.

I have been thinking of how the medical system treats Black women — no I have been enraged at how the medical system in the U.S. kills its most valuable, precious, dear, treasure — the Black women who have held the people of this land to account since their arrival. Calling out that crime demands its own essay, but the important thing here is that in The Color Purple, Alice Walker gives the main character, Celie these words

I curse you. Until you do right by me everything you think about is gonna crumble!

It took me until now to understand who Alice Walker was speaking to. It took me until now to put together as I saw the indifference my mother received from white doctors, nurses against the love and recognition that she received from Black nurses. The Color Purple, among other things is an indictment of a viciously corrupt system.

I was obsessed during those last days that she hold a flower. I brought her a purple orchid. My how she was able to make orchids bloom year to year.

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Mickens family laughter

I sometimes run into Dr Ron Mickens at one of my favorite Atlanta bakeries. Dr Mickens is a physicist who teaches at Clark Atlanta University (the featured image is a mural that hang in the entrance to the old CAU library). A few months ago he dropped some insights on how physicists allow their minds to explore the universe starting from simple, quirky, thought experiments. His musings always come with laughter and the earnest smile of a pure soul enjoying each moment on earth as if it were his first.

Today, I was a bit somber. We had laid our mother to rest just a few days ago. My soul ached. Sleep had evaded me last night. I stopped in the backers to pick up a treat for my brother. I was hoping Dr Mickens was there — I was hoping to pass on a call for papers to him.

He was there and was delighted to share stories of his son, who’d just recently gotten tenure at Harvard. Like father, like son, Dr James Mickens tenure post brought me some much needed chuckles today. As did this piece Slow Winter

You might enjoy this talk also

Nothing like cheerful Black excellence to raise the spirits!

History

Gender and Racial Bias in Cloud NLP Sentiment APIs

Here’s analysis I recently did of gender and racial bias in cloud sentiment analysis APIs. The takeaway: test before you leap.

Data for Breakfast

At Automattic, I work in a group that frequently uses natural language processing (NLP) — a kind of artificial intelligence (AI) — that tries to understand text. We have used NLP for suggesting domain names, to tag some support interactions, and to understand the different verticals that our customers build sites for.

In the course of building these tools, we have often encountered and have had to work around gender and racial bias that gets baked into the machine learning models that we use for text analysis. This is an acknowledged problem confronting NLP and the solutions are not simple. Building fair and non-toxic NLP systems requires constant vigilance, and we are continuously auditing new platforms and models to make sure that the users of our systems are not adversely impacted.

In the course of these audits, I’ve found evidence of gender and racial bias in the sentiment analysis

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Social Justice

Because Peace Requires Bravery

The picture and words are from the The National Memorial for Peace and Justice in Montgomery, Alabama. It is a memorial to the 4,400 and some victims of racial terror — mostly African Americans were murdered between the years 1877 and 1950.

Last weekend as I tried to wrap my mind around the tragedy, my mind wandered back 18 years to a peaceful summer Sunday when my partner and I drove to the Gilroy garlic festival. Fresh garlic cloves, garlic fries, garlic bread, garlic ice cream. I remember the tastes and aromas yes, but more than that the sounds of ordinary joy on a sunlit day. Families. Children. Peace. Acceptance.

When we visited the museum in Montgomery last year, it had struck me that in 1898 — the year that my grandmother was born — over 100 Black people had been lynched — many for the crime of being the first Black person seen by the mob. According to FBI records, 2019 is on track to surpass the racial brutality of 1898.

The victims of racial violence in El Paso and Dayton — like those a hundred years ago — had committed no act other than being born Brown or Black, speaking Spanish to a loved one or friend, or being in the same crowd as their Black neighbor.

Tonight I did not have much more to offer than sitting with my children, embracing them, and offering prayers. Remembering. Tonight, quoting a line from the memorial “We will remember, with hope because hopelessness is the enemy of justice.”

The quote “Because Peace Requires Bravery” sticks with me. I meditate on Asociación Madres de Plaza de Mayo, the brave mothers of the disappeared in Argentina who steadfastly refused to be silent, refused to stop calling their country to account. Persistence. “With persistence because justice is a constant struggle.”

Persistence, action, bravery.

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Aspiring towards anti-racism

The Atlantic magazine posted an a day ago article “We’re All Tired of Being Called Racists”. The article presented views of some supporters of the current (as of August 1, 2019) U.S. president at a recent rally. Many were perplexed at being labeled “racist”.

One of those interviewed in the piece insisted that they couldn’t be racist because their children were of mixed race. Yet Strom Thurmond — one of the U.S.’s most virulent segregationists of the 20th century — had an African American daughter Essie Mae Washington-Williams. Eduard Bloch was a Jewish Austrian doctor protected from anti-Semitic terror for a number of years during the 1930’s — a lone act of compassion during the anschluss. There are many cruel contradictions in this landscape.

Strict definitions of what racism is and isn’t aren’t fluid enough deal with the capacities that we each have for compassion and prejudice. Showing compassion for a daughter when enacting so many repressive laws doesn’t seem an acceptable bar. Yet, don’t we all deserve a path to redemption.

It seems so much easier and just to think in terms of allow all of us to escape binary traps, to aspire to, and ultimately attain some better version of ourselves and our society.

I think that this quote from Dr. Ibram X. Kendi is spot on when he writes:

No one becomes ‘not racist,’ despite a tendency by Americans to identify themselves that way. We can only strive to be antiracist on a daily basis, to continually rededicate ourselves to the lifelong task of overcoming our country’s racist heritage. We need to read books that force us to confront our self-serving beliefs and make us aware that ‘I’m not racist’ is a slogan of denial.

We can each actively aspire to be the anti-racist. Some first steps could include:

If all else fails, think in terms of how the children of one hundred years from now will judge you, and then work backwards.