Image: George Floyd March - May 29, 2020 Houston Texas, Herman Square
We are not living in a post-racism society yet. There is still so much work to do, and our healthcare & criminal justice system are reflective of the broken promises of politicians/policymakers , as well as the unfinished work of the many civil rights movements of the past. As we all endure the ongoing war on COVID-19, the war on equity and police brutality,the looming financial crisis as a result of a pandemic and the US administration being very out of touch with the country it serves, it's easy to feel very overwhelmed.
2020 has been a very stressful and anxiety-filled year in the US, as many of us have endured quarantine & stay at home orders, as well as the immediate return to attacks on Black lives by rogue police officers before stay at home orders were even put in place (Breonna Taylor killed in her home on March 13th). Recall George Floyd, killed May 25, 2020 by officers kneeling on his head, neck, and body as he cried out, "I CAN'T BREATHE". He was arrested, beaten in the back of a police car and murdered shortly after because a store clerk believed he passed a counterfeit $20.00 bill off to them.
The marches and protests for justice. The risks that we took going out into the streets to march for justice were very necessary, and have spun the most attention many of us have ever seen in our lifetimes for the atrocities visited upon on communities daily. Police brutality, disparities in health care, banking policies targeting our communities, lack of fair housing practices, policing in our schools, erasure of our history in textbooks and curriculum, high incarceration rates, unfair employment practices and so much more related to structural and systemic racism.
Some of the resolutions and calls for justice amongst activists and advocates include reimagining the structure of the current criminal justice system and police departments, and doing away with oppressive laws and policies under systemic and structurally racist systems.
Black Americans understand the risks involved with coming into contact with police officers in our communities. Even if we are the ones calling for help, we can easily and without regard for our lives, be mistaken for a criminal or a threat. There are also no shortage of instances of family or friends calling 911 for an ambulance to help with a loved one who was in crisis, and police officers showing up to escalate the situation and seriously injure or kill a loved one who only needed intervention.
There are many factors that can cause Black Mental Health Family Caregivers much more stress than usual during this pandemic. Studies show there are still disparities and inequities in healthcare for our communities. Black people experience medical bias at a much higher rate than non-black people. Long-standing systemic social and health inequities place us at a much higher risk of dying from COVID-19.
There is so much work to do to stop suffering in our communities. To create equity and wealth we have been robbed of. To enjoy the same luxuries the national anthem promises and the current structural systems that provide freedoms for white citizens, at the cost of health and welfare of our communities. We want to see an increase in the quality of life for Us as Black people now and for generations coming after us.
A Pandemic On Top of The Epidemic of Racism
It's been a very long and brutal battle against an epidemic of racism, for human rights and civility for Black Americans. The Civil Rights Act of 1964 is only 56 years old. Let that sink in. We are still fighting for our rights to life, liberty, and justice.
John Lewis, a congressman who served in the United States House of Representatives for Georgia's 5th congressional district, he also served with Martin Luther King Jr. during the height of the civil rights movement. Congressman Lewis was at the March on Washington, and at the "Bloody Sunday" march in Selma Alabama. He passed away this year on July 17, 2020, succumbing to his battle with pancreatic cancer. At a high risk, Mr. Lewis still fought for his people. He was 80 years old. He'd been fighting for civil rights since he was 18 when he met Dr. King. Imagine fighting from 18 until 80 years of age. That's 62 years of fighting for freedom for your people. Congressman John Lewis, like many before him, was still on the front lines fighting for civil rights, and against police brutality for Black people. Even during a pandemic he continued fighting. Even though he was high risk because of his health.
The amount of resilience and determination required by Black people to live in this country, even around the world, is ridiculous, and we are expected to remain mentally and emotionally intact while fighting both racism and a pandemic. Racism and a lack of quality healthcare for us is a very heavy weight and the reason that so many of our people are casualties of this COVID-19 war AND murder by police officers.
According to the Center for Disease Control (Demographics CDC COVID Data Tracker), Black Non-Hispanic deaths as of August 5, 2020 are at 22.44%, but Black people make up only 13.4% of the population. The CDC lists the following as factors:
Discrimination - "Unfortunately, discrimination exists in systems meant to protect well-being or health. Examples of such systems include health care, housing education, criminal justice, and finance. Discrimination, which includes racism, can lead to chronic and toxic stress and shapes social and economic factors that put some people from racial and ethnic minority groups at increased risk for COVID-19." CDC.gov
Healthcare access and utilization - "People from some racial and ethnic minority groups are more likely to be uninsured than non-Hispanic whites. Healthcare access can also be limited for these groups by many other factors, such as lack of transportation, child care, or ability to take time off of work;communication and language barriers;cultural differences between patients and providers; and historical and current discrimination in healthcare systems. Some people from racial and ethnic minority groups may hesitate to seek care because they distrust the government and healthcare systems responsible for inequities in treatment and historical events such as the Tuskegee Study of Untreated Syphilis in the African American Male and sterilization without people's permission." CDC.gov
Occupation - "People from some racial and ethnic minority groups are disproportionately represented in essential work settings such as healthcare facilities, farms, factories, grocery stores, and public transportation. Some people who work in these settings have more chances to be exposed to the virus that causes COVID-19 due to several factors, such as close contact with the public or other workers not being able to work from home, and not having paid sick days." CDC.gov
Educational, income, and wealth gaps - "Inequities in access to high-quality education for some racial and ethnic minority groups can lead to lower high school completion rates and barriers to college entrance. This may limit future job options and lead to lower paying or less stable jobs. People with limited job options likely have less flexibility to leave jobs that may put them at a higher risk of exposure to the virus that causes COVID-19. People in these situations often cannot afford to miss work, even if they're sick, because they do not have enough money saved up for essential items like food and other important needs." CDC.org
Housing - "Some people from racial and ethnic minority groups live in crowded conditions that make it more challenging to followi prevention strategies. In some cultures, it is common for family members of many generations to live in one household. In addition, growing and disproportionate unemployment rates for some racial and ethnic minority groups during the COVID-19 pandemic may lead to greater risk of eviction and homelessness or sharing of housing." CDC.org
As hospitals submit more data and updates, the reality of this pandemic becomes more surreal everyday. What may normally be a trip to the ER for a loved one in crisis is now something a Mental Health Family Caregiver may have a second thought about. Hospital policies and procedures have been revamped to accommodate the safety and well being of the hospital staff, patients and their family members. Part of these new guidelines is that family and friends cannot accompany a patient into the hospital. That could be a death sentence for someone who is unable to regulate their emotions while in crisis and an overzealous medical assistant or medical professional calls for police officers who aren't trained in assisting someone in crisis. Past incidents of officers shooting and killing unarmed Black people in a mental health crisis have shown us not many officers respect our lives as valuable.
Incarceration Versus Treatment
A trip to the hospital could end with a loved one in jail or prison, instead of receiving the necessary treatment.
This current climate is the perfect recipe for triggering a loved one and having a family choose between handling the crisis as best as they can without intervention, or risking a trip to a hospital where police officers can still be called. As a Black Mental Health Family Caregiver, that reality is terrifying for me should my loved one require a trip to the emergency room, or arrive via ambulance. We are, more often than not, advocates for the care our loved one gets in the hospital and anywhere else. A loved one isn't always coherent when they are in crisis. The added stress and anxiety of being hospitalized with the worry of COVID-19 looming, is enough to cause a severe triggering episode. Hospital staff aren't always considerate of an individual who may not be capable of making rational decisions, or may react in a way that a medical professional doesn't rely on the training they received to assist someone in a mental health crisis. Not all emergency rooms have a mental health professional on staff.
Police officers who respond to a call of someone being uncooperative and combative don't always utilize their training in "de-escalation" when engaging with an individual who is clearly in a mental health crisis. Sometimes they aren't trained at all. An untrained officer can cause an individual to panic and become even more uncooperative. Imagine having a psychosis episode and seeing an officer come in to address you. Even people not having a mental health crisis can replay images of police brutality, seen online or on the news in their minds. As Black people, an officer who is unable to see our humanity first can make a very permanent decision by taking our lives as the result of a temporary crisis.
On top of working and caring for family, some Black Mental Health Family Caregivers are also responsible for loved ones who are incarcerated due to a broken criminal justice system that punishes people with mental illness with jail time instead of treatment.
The prison industrial complex in the US is a multibillion dollar industry, as is The Cash Bail industry. Again, Black Americans make up 13.4% of the US population and 40% of the US prison population.
Black Mental Health Family Caregivers are often faced with the costs of legal representation for their family members who were arrested instead of sent for treatment, in addition to the costs that only families who have supported a loved one who is incarcerated know about.
There is the constant fear of a loved one being mistreated by the prison guards, or targeted because of their mental illness. Sometimes loved ones will not want to disclose that they are battling a mental illness to the prison staff out of fear of stigmas attached to mental illness or because they can face isolation for not being compliant and taking their medication. Black Mental Health Family Caregivers are very aware of the dangers of a loved one being abused or neglected by prison staff, due to murders of Black men and women in the prison system. Keeping a healthy line of communication with a loved one open means taking phone calls, and visiting regularly to ensure they are in good mental and physical health.
Money for phone calls, food and basic items like toilet tissue and soap are necessary. In the case of COVID-19 procedures, prison systems are requiring inmates to be provided with PPE and other precautionary supplies not being supplied by the prison. Caregivers are hearing stories of failure in procedures and policies related to COVID-19, from their family members. Loved ones are being put at risk for contracting the virus because other inmates who are ill are not being quarantined, or incoming and new arrivals of people daily who are being put into general population without being properly quarantined.
Black Americans are over-represented in jails and prisons, making up 40% of the prison population. In 2016, the imprisonment rate for Black men (2,417 per 100,000 Black male residents) was more than 6 times greater than that for white men (401 per 100,000 white male residents).
Black people with mental health conditions, specifically those involving psychosis, are more likely to be in jail or prison than people of other races, according to Mental Health America.
Those of us who are caregivers for loved ones in the LGBTQ+ community like my husband and I, understand the unique challenges a loved one who is incarcerated must endure in addition to all of the other dangers of incarceration. Violence against people in the LGBTQ+ communities within the prison system is a very common occurance, especially for trans people. Caregivers must carefully and vigilantly pursue instances of sexual abuse and assault, and hope that retaliation isn't allowed against their loved one.
Another concern for Black Mental Health Family Caregivers are loved ones are at an increased risk due to being immunocompromised or other pre-existing conditions that make their loved ones predisposed to contracting COVID-19. It's very difficult to get information if a loved one becomes ill and is sent to the infirmary. As a caregiver who has supported someone who was incarcerated, sometimes you never know a loved one was in the hospital or transferred unless they have "dorm mates" who will call and let you know they are in the hospital. Otherwise you will be notified by your loved one if and when they are released.
There's no way to always predict how or when a loved one could be in crisis, and so along with the unpredictability of this pandemic, a political climate that grows more grim by the tweet, and many caregivers either unable to return to work or returning from work hoping they haven't brought COVID-19 back with them, it's easy to see how Black Mental Health Family Caregivers carry additional weight due to racism
Financial Burden and Housing Insecurity Threaten Our Communities
Mortgages and rent don't have pause buttons on them, just as utilities, food, and medical expenses don't.
Generation Xers are amongst the highest number of caregivers. According to National Alliance for Caregiving and AARP(April 2019), the average age of a caregiver is 49.2 years old, with 34% of caregivers being 65+ years old.
Caregivers are spending their retirement savings caring for loved ones, sometimes including aging relatives and Millennials who have had to return home due to the economy, unemployment, and a lack of affordable housing.
With so many families moving into one home, there are other hurdles they are faced with. Home ownership is down from the Baby Boomer generation. Owning your own home became a luxury as many Gen Xers weathered multiple recessions and housing bubble collapses. Layoffs and a change in the landscape for employees and the companies they worked for, were the result of many degreed professionals being kicked out into the "job search pool" after the 2007 crash of the Banking Industry Bailout. Many families lost their homes, and those who didn't own homes saw an increase in the costs of living with no change in their wages or salary.
Many of us Black caregivers in the "Sandwich Generation" are caring for loved ones in generations before us and after us. Many of us do not have the benefit of the generations before us passing down wealth. There are two separate "Sandwich Generations", a Black one and a white one. The accumulation of wealth by the white Baby Boomers who benefited from good retirement packages and life insurance, allowed them to pass wealth onto generations after them. I've personally spoken to white mental health family caregivers who were using their parents' retirement savings or money from selling their parents home, to build onto their existing homes to accomodate the parent they are caring for. One caregiver and her husband were selling the house her parents purchased for them and their parents' home to buy a bigger home to allow a full time nurse to live with them. I don't know too many Black families with that ability.
Homeownership for Black Gen Xers and white Gen Xers looks drastically different. The Great Recession dwindled down a good deal of the assets Black Gen Xers had. Many witnessed their only asset being seized by the bank, and depleted what was left of their retirement and savings to limp out of the recession into recovery. Other economic slowdowns in the years following the recession allowed an already biased job market to further exclude Black workers, meaning taking lower wage jobs to survive. Many Black Gen Xers are still not making what they were before the Great Recession. As the cost of living and health insurance climbs steadily, many Black Gen Xers are still carrying their adult children who haven't aged out yet on their health insurance. Some are shouldering the costs of healthcare and medications for their parents or other aging loved ones they are caregivers for.
This current pandemic will see many more Black Mental Health Family Caregivers shoulder the financial burden for both the Boomers and Millennials, and currently there are no resources in place nationally that offer relief. Many are still working full time jobs, managing the stress of trying to stay virus free, navigating racially charged workplaces and/or communities, and with very little respite or relief from the structural and systemic tools of racism that impact the well being of both them and those they care for.
"At 171,000, the net worth of a typical white family is nearly ten(10) times greater than that of a Black family($17,150) in 2016. Gaps in wealth between Black and white households reveal the effects of accumulated inequality and discrimination, as well as differences in power and opportunity that can be traced back to this nation's inception." - Brookings.edu , "Examining the Black-white wealth gap"
It is obvious that structural respite, or financial relief would better serve our communities and be a great deal more fiscally sound for the local, state, and federal fundings. Creating resources to save people from homelessness should be priority. Because so much happens before resources are approved at a federal level, it's important that we as community members who are able, become stewards of the communities we are a part of, that surround us, or who are amplified by other social activists and advocates.
Minor Children of Loved Ones Are An Increasing Responsibility
In addition to all that Black Mental Health Family Caregivers must navigate are the added responsibilities of minor children of the loved ones they are supporting and caregivers for.
Black families face an oppressive social service system in Department of Children and Family Services. There have been some changes of recent but there is still much to be improved.
Many caregivers take on the responsibility of minor children of loved ones they are caregivers for without the intervention of child protective services. Black caregivers understand the risks of children caught in the judicial system and foster care system. There is a lot of energy and responsibility that caregivers take on additionally to ensure the children in their care remain there. There's no shortage of horror stories of children harmed in foster care.
According to Childwelfare.gov "Black children are represented in foster care 1.8 times their rate in general population", and of the 437,465 children in foster care in 2016, 23% of them were Black children.
Black Mental Health Family Caregivers go to great lengths to protect the children of loved ones they are caregivers for from the fallout of mental illness and from the predatory institutions of systemic and structural racism that cause more suffering and harm.
Caregivers take on the added burden of daycare expenses, take early retirement, or quit their job to care for young children. Because of the guidelines for receiving public assistance if you are a family member, many do not receive cash aid, food stamps, or medicare for minor children. Non relatives are able to receive assistance and a host of other resources not available to relatives, which would incentivize children not being returned to their families.
There are caregivers who are in debt and in crisis because they are caring for children of loved ones they are caregivers for, sometimes in secrecy. This is a very dangerous reality given the mortality rate of Mental Health Family Caregivers and the additional stressors for Black Mental Health Family Caregivers due to systemic and structural racism. COVID-19 has restructured the educational system and how children attend school. Many children are at home and attending school online. Some of the barriers to education at home for Black children who live in impoverished communities, and may not have the benefits of schools in more affluent communities are:
- Lack of money to buy necessary school supplies including technology required for online schooling, i.e internet access, computers or laptops, electricity.
- Older caregivers who may have difficulty with helping with homework due to visual impairments, illiteracy, or medical conditions.
- Food insecurity
- Housing insecurity
- Children with IEP's or special needs Caregivers aren't prepared or qualified for.
There aren't always resources available to schools in Black communities, and Black Mental Health Family Caregivers are at a disadvantage when it comes to advocates who will fight for them because most don't even know they exist because they are well hidden amongst other parents, grandparents, and caregivers. Teachers who were overwhelmed before the pandemic are not asked to do even more as a result of online instruction as they themselves are juggling caring for children and and weathering the unpredictability of ever changing procedures due to COVID-19.
When we talk about redirecting funds from police departments that aren't serving our communities but getting a lions share of federal and state funding, this is a sector of public and social needs that could be better met by hiring specialized professionals to address the unique needs within our communities. Reducing harm and creating a better quality of life for our communities.
As citizens it's important to be aware of the suffering of others. We are at a time in this country and in our generations due to social media and it's ability to allow people to share their stories in real time, without the filter or editing of main stream media. Many are banding together who have more resources in their communities to help other communities that are struggling. In order for all of us to arrive on the other side of this pandemic, in tact and healthy; it's important to become invested in how we as individuals, families, and community members act socially responsible. Posting Black Lives Matter on our pages and in our profiles make for good aesthetics, but in order to truly stop suffering its going to take rolling up our sleeves and getting into the trenches. It's time to get uncomfortable with the suffering of others.
Understanding the importance that All Black Lives Matter both within our community and outside our community is imperative to the safety of us and our loved ones. It's why we as an organization want to call attention to the unique challenges faced by Black Mental Health Family Caregivers and our loved ones. When our humanity is questioned and not respected, it's easy for us to fall prey to or lose our life to those who are empowered by a system built on structural racism. Our experiences differ greatly than non-Black Mental Health Family Caregivers, and although some see that as trauma olympics, many of of us would rather not have suffering a part of our existence any longer.
Please follow us on all social media platforms as we seek to change policy and offer structural respite by using donations to help keep caregivers and their loved ones in housing, their utilities paid, able to buy food, help with paying for medications and assistance to elderly caregivers with caring for young children they now have the responsibility of. Look for the hashtag: #BMHFC4Justice
About the Author:
La Shawn L. Splane-Wilburn is the Founder of HOMAGI. An artist who loves painting, DIY home projects, and furniture restoration. A gardener, a novice harmonica player, who enjoys hiking, fishing, and nature. A Womanist, a wife, mother, grandmother, daughter, sister, and aunt. A Black woman on the front lines of activism and advocacy for civil rights. An LGBTQ+ accomplice, a Mental Health Family Caregiver of 6 years, a good human and steward of those in need of an amplified voice.
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