Images: Georgia Hess(Maternal Great Grandmothe), Almatia Williamson(Maternal Grandmother), Debera Splane-Sutton(Mother), and LaShawn Splane-Wilburn(Me)
It’s National Women’s Month and according to Whitehouse.gov “Each year, Women’s History Month offers an important opportunity for us to shine a light on the extraordinary legacy of trailblazing American women and girls who have built, shaped, and improved upon our Nation... Throughout American history, women and girls have made vital contributions, often in the face of discrimination and undue hardship. Courageous women marched for and won the right to vote, campaigned against injustice, shattered countless barriers, and expanded the possibilities of American life. Our history is also replete with examples of the unfailing bravery and grit of women in America, particularly in times of crisis and emergency...”
One of the contributions by Women I’m focusing on is in the world of Family Caregiving, with an emphasis on Black Mental Health Family Caregivers, and the unique and overlooked contributions made in the scope of informal healthcare, or rather healthcare in the family setting at home.
It wasn’t until I became a Family Caregiver myself that I even knew what Family Caregiving was. It wasn’t until I was well into my caregiving journey that it hit me that the women in my family had been in this role long before I was born.
In my research for this blog entry I came across the some of the most interesting research and studies, although few were out there, the ones I found were empowering.
In a journal article of JSTOR by Rhona Wells-Wilbon and Gaynell Marie Simpson it stated:
“Caregiving traditions of African American women are deeply rooted in African origins throughout the Diaspora. Although these traditions are highly valued, there is minimal information on how these caregiving roles are passed from generation to generation, and less is known about women’s enduring resilience and the ways in which caregivers alleviate challenging stressors.”
What Space Do We Belong In?
As a Caregiver I ran into very little blogs or articles about the the experiences of Black Family Caregivers, and even less about Black Mental Health Family Caregivers. I remember entering a chat room for Caregivers of mental health, I won’t mention the App, because I also found very good resources that lead me to researching and building better Caregiving tools for myself. Also it wasn’t the App it was the other Caregivers there who weren’t used to Black people in those spaces.
I found trying to discuss the challenges I was facing in healthcare with my loved one, was foreign to many of them. I would get spotted replies like, “that’s horrible that’s happening to you..”, or “I’ve never personally experienced that, but I’m sorry that was your experience...”. Others would internalize what I was saying and reply, “I don’t think it was so much about race. How did you ask for what you needed..?”, or “maybe they were just overwhelmed with all of the patients they were seeing...”.
Needless to say, it made talking about what I was facing on my journey with my loved one, very difficult to talk about in that space. Eventually I gave up and never went back, even after the notifications in my email of other caregivers sending emojis. Eventually I closed my account.
I thought about those encounters and many like it offline, last year(2020), as I prepared to run a new campaign to raise awareness for Caregivers, and the needs we need to address for us in this new age of “Reimagining Healthcare”.
I thought about how my mother had been part of the caregiving team with my grandmother for my grandfather, my aunts and uncles. Then it hit me...wait...my grandmother was a caregiver. Then it hit me, my great grandmother, who I challenged about my uncle and letting him move out and get on his own, was a caregiver as well. I wondered just how many generations back, did caregiving go with my family.
Research on this topic kept revealing more and more about Black Women and caregiving. We are all to familiar with our ancestors in the role of wet nurse and nurse on plantations...I chose to forego that period and focus instead on the history of the Matriarchs in caring for their families. Why? Because there is no shortage of examples of nursing abused, maimed, emotionally, spiritually, and mentally broken people back to health in our communities during chattel slavery and Jim Crow.
According to The Exceptional Role of Women as Primary Caregivers for People Living with HIV/AIDS in Nigeria, West Africa
By Ekaete Francis Asuquo and Paulina Ackley Akpan-Idiok ( Submitted: December 15th 2019Reviewed: August 21st 2020Published: September 29th 2020)
“In Africa, women play an indispensable role in family life. The normative roles of women extend from reproductive role to the raising of children and caring for sick family members. These roles are very unique and are dictated by culture, religion and beliefs. Despite these, their contributions in caregiving remain unrecognized except by the beneficiaries...”
I thought how telling, “Despite these, their contributions in caregiving remain unrecognized except by the beneficiaries..” was. How many women in our communities have been in this role of caregiving and endured, at least from my experiences as a Black Caregiver, barriers from society, healthcare professionals, AND family?
As a Black Woman the pushback I receive in society, as I advocate foe myself is based on the “Angry Black Woman” narrative. Caregiving adds in a whole other layer of villanizing, “Controlling Angry Black Woman”, and not matter how calm and composed we remain, the response more often than not is aggressive.
How Policy Negatively Impacts Black Family Caregivers Who Are Women
The Women’s Suffrage Movement according to
Sarah Elizabeth Adler in February of 2020, in an article, “Black Women Had to Fight for the Right to Vote on Two Fronts”
“Honoring black suffragists means first acknowledging how they were sidelined from the mainstream suffrage movement, whose leaders feared alienating white women and losing support in the South, says Ida Jones, a university archivist at Morgan State University in Baltimore...Sometimes, the discrimination was overt, as when organizers of the 1913 women's suffrage parade in Washington, D.C., ordered black participants to march at the end. At other times, it was more subtle: The National American Woman Suffrage Association, formed in 1890, declined to include black women or suffrage groups in its ranks...That exclusion spurred the formation of separate organizations such as the National Association of Colored Women, founded in 1896 in the nation's capital. Prominent black suffragists such as Mary Church Terrell, who was born to former slaves in 1864, led the group and also went on to help found the National Association for the Advancement of Colored People in 1909 in New York City....”
When you delve into the world of policy in healthcare and how it negatively impacts communities of BIPOC communities, specifically for Black Caregivers, the results are glaring. During the Obama/Biden administration there was so much pushback regarding the Affordable Care Act, coined “Obama Care” by Republicans, to raise even greater resistance to its acceptance.
According to “THE UNEQUAL FINANCIAL BURDEN FOR BLACK CAREGIVERS” on Ozy.com
“... the financial strain on African American caregivers is particularly acute when compared with their White counterparts. Generally, African American caregivers have lower household incomes than White caregivers, but spend similar amounts of money on caretaking, according to research by the AARP. Effectively, they face a greater financial “care burden”...Some 57 percent of African American caregivers spend more than 34 percent of their annual income on costs associated with providing care, compared with 14 percent for White caregivers....This commitment extends to people’s time — 57 percent of African American caregivers meet the standard of “high burden” and spend on average 30 hours a week caring for their loved one...”
During the last administration, (2016 - 2020) Trump/Pence, much of what the the Obama/Biden administration did in the interest of BIPOC communities were stalled or reversed. According to Pew Research, “47% of White Women voted for the Trump/Pence administration”.
Wealth Disparities Amongst White Caregivers and BIPOC Caregivers In Comparison to Financial Burden of Caregiving
“New data from the 2019 Survey of Consumer Finances (SCF) show that long-standing and substantial wealth disparities between families in different racial and ethnic groups were little changed since the last survey in 2016; the typical White family has eight times the wealth of the typical Black family and five times the wealth of the typical Hispanic family... In the 2019 survey, White families have the highest level of both median and mean family wealth: $188,200 and $983,400, respectively (Figure 1). Black and Hispanic families have considerably less wealth than White families. Black families' median and mean wealth is less than 15 percent that of White families, at $24,100 and $142,500, respectively. Hispanic families' median and mean wealth is $36,100 and $165,500, respectively...”
Disparities in Wealth by Race and Ethnicity in the 2019 Survey of Consumer Finances
Neil Bhutta, Andrew C. Chang, Lisa J. Dettling, and Joanne W. Hsu with assistance from Julia Hewitt ( Dated: September 28, 2020) [link: https://www.federalreserve.gov/econres/notes/feds-notes/disparities-in-wealth-by-race-and-ethnicity-in-the-2019-survey-of-consumer-finances-20200928.htm ]
In comparison according to an article on AARP, “The Cost of Family Caregiving: Out-of-Pocket Spending Surprisingly High”:
“Hispanic/Latino family caregivers spend an average of $9,022, which represents 44 percent of their total income per year. By comparison, African American family caregivers spend $6,616, or 34 percent; white family caregivers spend $6,964, or 14 percent; and Asian Americans/Pacific Islanders spend $2,935, or 9 percent.”
The financial impact of caregiving on the households of Black Caregivers being impacted by 34% of their income translates into a good deal of their families living expenses on top of that. Meaning Black Caregivers are upside down and in the red managing caregiving in additional to other stressors.
The weight of societal stressors combined with financial stressors, and other sociology-economic factors places Black Caregivers at a greater risk of stress related illnesses. Increasing the mortality rate for Black Caregivers exponentially.
Criminal Justice and Mental Health Intersect for Black Caregivers
Another factor of stress and caregiver barrier is the higher likelihood that a Caregiver winds up supporting a loved one that’s incarcerated, is the higher probability that a loved one will be redirected to jail/prison instead of receiving mental healthcare.
According to an article on NAMI.Org “Racial Disparities in Mental Health and Criminal Justice”:
“there is evidence that prosecutors are more likely to grant pretrial diversion to white defendants than to black or Latinx defendants with similar legal characteristics. This could have especially negative effects for people of color with mental illness, since pretrial jail incarceration has significant negative health impacts. Other evidence shows that mental health screening tools used by jails reproduce racial disparities, resulting in fewer black and Latinx people screening positive and thus remaining under-referred and undetected in the jail population.”
Also:
“Vera’s Arrest Trends tool—which maps annual, nationwide arrest data—shows that black people were 2.17 times more likely to be arrested than white people in 2016. Our Incarceration Trends tool shows even greater racial disparities, with black people being 3.5 times more likely to be incarcerated in jail and nearly five times more likely to be incarcerated in prison nationwide.”
This means in addition to the 34% of their annual income, Black Caregivers may also carry the additional burden of a loved one incarcerated. Sometimes requiring the caregiver to hold multiple jobs, or to leave a job because of increased responsibility of caring for children of a loved one incarcerated.
According to “Collateral Consequences: the Experiences of Black Women with Incarcerated Loved Ones”
Keiondra Jné Grace
Western Michigan University:
“An overwhelming majority of work focuses on the economic burden to families of the incarcerated. Literature highlights that men from low-income communities are more likely to experience incarceration; therefore in many cases their incarceration may exacerbate the financial hardship already being experienced by families (Turanovic, Rodriguez & Pratt, 2012). One impact is the perceived loss of income from the incarcerated individual. Mumola (2000) found that close to 70% of incarcerated fathers earned income the month prior to their incarceration. Further, Arditti (2012) notes that many caregivers for incarcerated individuals’ children—primarily current and past partners—experience the loss of jobs or income due to increased responsibility for the well being of the children. Scholars also highlight new expenses that families incur with a period of incarceration, including telephone calls, postage fees for letters, travel costs for visitation, attorney fees, and money sent directly to the inmate for commissary purchases (Arditti 2012; Comfort 2014; Turanovic et al., 2012)...”
Additional costs of supporting a loved one who’s incarcerated:
“Nearly 2 in 3 families (65%) with an incarcerated member were unable to meet their family’s basic needs. Forty-nine percent struggled with meeting basic food needs and 48% had trouble meeting basic housing needs because of the financial costs of having an incarcerated loved one...
Women bear the brunt of the costs—both financial and emotional—of their loved one’s incarceration. In 63% of cases, family members on the outside were primarily responsible for court-related costs associated with conviction. Of the family members primarily responsible for these costs, 83% were women.
In addition, families incur large sums of debt due to their experience with incarceration. Across respondents of all income brackets, the average debt incurred for court-related fines and fees alone was $13,607, almost one year’s entire annual income for respondents who earn less than $15,000 per year...”
These factors alone, by themselves add a very heavy burden on Black Mental Health Family Caregivers, add them to all of the other factors? That’s an immense amount of burden on Black Mental Health Family Caregivers. We haven’t even added the health disparities in healthcare.
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It was important to me that this National Women’s Month we give flowers to the Black Mental Health Family Caregivers who carry a huge burden, and who go unrecognized for the amount of physical, mental, spiritual, and emotional labor that goes into supporting and advocating for loved ones.
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