Mental health could be the great equalizer of COVID-19. But will it?
By Michelle Molitor and Nicole Young
What does it mean to grapple with a grief as voluminous as what we’re feeling right now?
Source: Center for American Progress
Image: Getty/Star Tribune/Stormi Greener
Are we mourning the lives we’ve lost, the humans who will not receive proper memorials or tributes? Is it the sadness of uncertainty that is weighing us down every day? Are our feelings rooted in the loss of both bodily autonomy and community? Is it all of these things?
The 1918 flu pandemic came in two waves. The first killed about three to five million people; the second, 40 to 50 million. It is this image of waves that best encompasses what we are encountering in the second largest pandemic in modern history.
Imagine standing in the ocean with your feet planted in sand, watching a wave approach with simultaneous awe and fear. To weather the wave requires utter surrender: an acknowledgement that the water, and not you, is responsible for what comes next. You can prepare but you cannot control.
Similarly, the second wave of grief and mourning that looms on the horizon is not within our control. But it is crucial that we prepare — especially as we consider the impact on mental health across our society.
“If the most resourced and privileged among us are feeling the impacts of physical distance and isolation, we know worse is true for those who have historically had the least legal and societal protection. ”
And if the most resourced and privileged among us are feeling the impacts of physical distance and isolation, we know worse is true for those who’ve historically had the least legal and societal protection.
We can lean into our stories both past and present to figure out how to weather this — and in doing so, we can ensure we’re serving those most marginalized by society.
1. Ground in history.
“Everyone has mental health, but not everyone has mental illness,” says Rebecca Cokley, Director of Disability Justice Initiative at the Center for American Progress (CAP), in a conversation with The Equity Lab in late April 2020.
Cokley reminds us that we only have to look at the country’s first hot spots for COVID-19 to understand the historical influences on the spread of this pandemic in our country. The first wave of the coronavirus pandemic in America started in institutions in Washington state, places like nursing homes and long-term care facilities, where we put people that society typically excludes: older people and people with disabilities.
In the late 1800s, cities across the US began passing what were referred to then as “ugly laws.” These laws were designed to criminalize disability and ensure that those deemed ugly — “diseased, maimed, mutilated, or in any way deformed” — were swept away from the delicate eyes of “good society” and then institutionalized. In Chicago, one such law stayed on the books until 1974.
What we enshrine in law both reflects and affects what we prioritize. And protections for the disabled and those with mental illnesses are relatively new in America.
As a result, those with disabilities or the elderly who suffer with mental illnesses like dementia, Alzheimer's disease, bipolar disorder, or chronic depression are last on the list for care, and in the case of this current global crisis, attention.
The Nursing Home Reform Act of 1987 put in place protections to benefit the elderly and disabled at nursing homes and mental health care facilities for the first time. Those protections were further bolstered under the Obama administration in 2016, despite counter-lobbying by many nursing homes. But the current presidential administration has consistently weakened regulation and oversight of nursing homes and long-term care facilities.
In July 2019, pressured by the lobbyists representing nursing homes and not their patients, Centers for Medicare and Medicaid Services lifted requirements that every such facility have at least a part-time infection control specialist on site.
In practice, this meant that not even eight months later — the week of March 23, 2020 — nursing homes across the country were caught flat-footed and completely unprepared when 146 care facilities reported COVID outbreaks. They were further overwhelmed and unable to recover when 400 reported cases emerged a week later.
Without a public imperative to provide care and protection for the most vulnerable, the support we all may need on the other side of this pandemic is at peril.
2. Listen to those most impacted.
Cokley defines disability more broadly than many. But as a little person and disabled woman, she believes that a more expansive definition of disability helps us rather than hurts us.
“Every time there is trauma in this nation, there is an uptick in disability,” she explains. It’s a statement that’s hard to grapple with — in part because of all of the stigma we’ve heaped upon people with disabilities historically.
Communities of color, especially Black people in America, have visceral reactions to these types of labels. It’s always dangerous to be Black, but to be Black with a disability means tracking and decreased opportunities in schools, institutionalization without consent, illegal experimentation, and sometimes death.
The trauma that Black people endure in a racialized country is widespread, and there is a legitimate fear that accepting trauma as a disability will lead to further pathologizing and mistreatment of Black people.
But Cokley believes by expanding the tent of disability, communities of color can gain greater access to the resources they need, and she has worked with several Democratic presidential candidates to develop their disability platform to that end — including Senators Elizabeth Warren and Cory Booker.
In Cory Booker’s K-12 platform, Cokley and her team at CAP proposed a policy fast track for communities facing trauma. Under this policy, in a community with significant trauma (for instance, lead contamination, high cancer rates caused by a power plant, or a police-involved shooting), a school district could reach out to the U.S. Department of Education and receive emergency funds on a temporary basis.
The impetus for this plan? The kids in Flint, Michigan, who went over a year without even the legal right to services that would remediate the new disabilities caused by the city’s contaminated water.
The conversation about mental illness during COVID-19 may seem niche, especially if we don’t struggle with a mental illness ourselves. But the reality is that trauma is a disability that often exacerbates underlying mental health issues or creates new ones. And there is no person in our country who will emerge from this pandemic unscathed by trauma.
It is imperative that the voices of disability and mental health advocates lead us as we chart a path through the choppy waters of this pandemic.
3. Advocate for radical change.
Those with mental illnesses like dementia, Alzheimer's disease, bipolar disorder, and countless other conditions are last on the list for care and (in the case of this current global crisis) public attention. The needs of those with mental illnesses are often framed as being at odds with the rest of the population — portrayed as a drain on resources, rather than as a critical part of a society that acknowledges the humanity of every person.
In Cokley’s assessment, community centered, home-based care is a large part of the solution. Large long-term care facilities are inherently inhumane, fraught with corruption, and often dangerous for those living in them, she says. Instead, in a community centered care model, the same government dollars that are used to treat a person in such a care facility would be directed for use at home.
For Anya Canache, a Licensed Professional Counselor based in New Orleans, community centered is rooted in honoring the connection between mind, body, and soul. In her more than 10 years of experience as a therapist, she returns over and over again to the reality that mental health cannot be siloed from overall physical and spiritual health. But because of strict limitations in our westernized healthcare system, Canache is also training to be a registered nurse. By adding nursing to her practice, she can prioritize holistic care and further channel her own ancestral knowledge.
Canache is one in a long line of shamans: Indigenous healers who focus on healing the whole being, not just parts. She believes that de-centering the white gaze in communities of color, particularly when it comes to mental and spiritual health, will significantly augment the quality of care those same communities receive.
When asked what that would look like in practice, Canache shares the sobering story of a young child who came into the emergency room during one of her nursing rotations. She performed CPR, the medical team did everything possible to save the child, but he ultimately died. In the moments after his death, the medical team decided to leave the mother in the room with her child and her grief. Alone.
And while Canache understands the norms of western medicine that led to that moment, she believes a holistic response would have honored the collective moment of grief they all shared in witnessing the child’s passing. In Canache’s view, "To not hold hands to support this mother, to not acknowledge" this passing of life deprived not only the mother, but also the practitioners themselves, of a moment of healing.
So what would radical change look like on a large scale? In Cokley’s vision, it would be a dismantling of the status quo by fully funding community based mental health care using Medicaid and Medicare dollars. For Canache, radical change involves a community based care model that is deeply rooted in holistic practice. But regardless of specifics, radical change must involve leadership by mental health advocates and the voices of those most impacted.
4. Build and iterate.
Whatever form it takes, a shift to community based care does not mean deregulation and lack of quality. Cokley believes that a fully funded government system of community based care could revolutionize mental healthcare by paying healthcare professionals (such as home health aids) a living wage and by assisting individuals and families with quality checks, resources, and personalized care. All of this would need to be bolstered by legislation that is agile and responsive to the needs of individuals, not corporations.
As we dismantle white-centered understandings of health, both mental and physical, building a new healthcare system that unites the many facets of a person’s life (mind, body, and spirit) will take time and patience. Especially during COVID-19, “There are no equalizers in a society that is so unequal,” says Canache. “If you have a landscape like this and you throw a blanket over it, it doesn’t make the landscape flat.”
There is a second wave of grief and pain coming in this pandemic. And bracing for its impact means creating a new mental healthcare system — one that is committed to unearthing disparities and to building a practice that is robust, caring, and holistic.
Want to learn more?
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Read:
4 Ways to Improve Access to Mental Health Services in Asian American Communities
The coronavirus pandemic is pushing America into a mental health crisis
This is the third in a series of blogs that examine current issues of race and equity through the lens of history. Read the first and second in the series.