Trapped in the Digital Poorhouse: On misogynoir, mandatory reporting, and Myalgic Encephalomyelitis

V. Copeland, Ph. D, MSW 

“Whether the Jezebel, mammy, Sapphire, and later the “welfare queen” or even the “strong Black woman” archetype, misogynoiristic portrayals of Black women shape their livelihoods and health. . . . Misogynoiristic caricatures materially impact the lives of Black women by justifying poor treatment throughout all areas of society and throughout US history.” – Moya Bailey[1]

“I imagine an African American mother of three who has worked two jobs to be sure that her family is well cared for, who suddenly is too sick to work at all and can find no explanation. . . . There are thousands of stories just like these. They deserve the strongest effort from their government to refute the image of ME/CFS as a "white person's disease" and to guarantee them a correct diagnosis. I will never stop fighting for this to happen.”  -- Wilhelmina Jenkins[2]

I believe that I am coming around the bend. My limbs no longer feel like they are being pressed down by iron weights, unable to budge regardless of any whispered prayer or herculean physical effort attempted. During these episodes, otherwise called Post-Exertional Malaise or PEM (Grach et al., 2023), the only thing I can do is surrender into the heaviness and lie still for hours. I am lucky. I had not had an episode like this in months. In fact, I considered myself to be significantly improved from the state I have been in for the past three years, where many days I could not lift my own head. As I slowly make my way out of this latest severe episode, I try my best to ignore the deep-seated fear that I am permanently worsening.  Instead, I find myself internally repeating “take it one day at a time”. Although these self-talks help to maintain stability in my mental health (as it is so easy to be hampered down by self-blame), they do little to take away the physiological pain and fatigue that so considerably impact me during an episode of PEM. This is my plight and my curse as someone with Myalgic Encephalomyelitis “MECFS”.

Stress, is what spurred this latest regression. Last week an Adult Protective Services or "APS" investigative worker came knocking on my door for an unannounced visit, just two business days after a slew of questions were sent to me from my In-Home Supportive Services “IHSS” worker from the Orange County Social Services Agency. The questions were so plentiful that I had to ask the worker whether his interrogation was due to some trouble I may be in with the county, to which I wasn’t aware. Based on my own experience with Child Protective Services, I knew that questions from county agencies were seldomly innocuous. Although he replied hastily with “no you’re not in trouble 😊”, just a few days later an investigatory worker came knocking on my door on the grounds of self-neglect. This started a torrential downpour of fear, anxiety, and confusion within me. Although they were not granted access, they said they’d be back. I immediately went into crisis mode, contacting all the attorney colleagues I knew and every legal aid center I could find. Because I am privy to these institutions as a social worker myself, I also consulted the Welfare Institutions Code and APS handbook. Though filled with trepidation, I knew I had to understand my rights.

The mental and physical energy I expended for a week straight on this sapped the few available energy reserves I need to survive every day. Rather than taking care of my needs, I spent my mitochondrial capacity sending emails, filling out online requests, and waiting on hold through my IP Relay app that frequently disconnects service. This required all of my limited energy reserves. As someone with severe MECFS, being able to prepare my own food, eat, and bathe myself is a privilege. The APS report and subsequent investigation was not only unnecessary and traumatic, it also made me feel significantly worse in every way.

Now that the coast is temporarily clear and I am not in imminent threat of caseworker surveillance, I can finally breathe and ask myself the many questions plaguing my mind. Some of these questions I will get into in the later parts of this piece, as many require a review of some key theoretical frameworks and terms including ableism (Lewis & Yancy, 2023), racism (Gilmore, 2007), misogynoir (Bailey, 2021), “matrix of domination” (Collins, 1990), organized abandonment (Gilmore, 2007), and extractive abandonment (Vierkant & Adler-Bolton, 2022). My intention in writing this piece is to better explore the ways in which various ideologies impact the care economy, and how these ideologies lead to a direct and significant impact on our social institutions, communities, and experiences as individuals.

Although my race, gender, income status and ability may not have directly or intentionally led to the specific APS report recounted above, the creation of a process that requires intrusion and surveillance to access “care” means that “care” is deeply steeped in logics of carcerality and eugenics. Consequently, we have come to know that the care economy is influenced by racialized, gendered, ableist ideas about safety, risk, and health. Mandatory reporters, like the one who presumably reported me, do not operate in a vacuum. Under capitalism and thus organized abandonment “care workers” become agents of the state who depend on the utilization of carceral tactics to dispense “services”. Care workers turned data workers, operate under a constant sense of manufactured scarcity, the idea that as a society we have few resources meaning we must surveil applicants and recipients of services to ensure that those who do qualify for government support are both worthy and compliant. This is not new, but an extension of the intrusive and violent tactics of surveillance that black, disabled, and otherwise non normatively classified individuals have experienced for generations (Browne, 2015; Gustafson, 2011).

Neither is this a simple, micro-level personal issue between me and the county. Caregivers registered with IHSS remain a largely low-income woman of color base of migrant workers that are underfunded and under protected. Registered care providers are burnt out, taking care of their own families, and being run out of the country by Immigration and Customs Enforcement or “ICE” and Border Patrol.  The reduction in already sparsely available caregivers has led to an inability for me to find stable caregiving through the county, which resulted in a subsequent report made to APS for “self-neglect” due to lack of stable caregiver. This is a clear example of how the expansiveness of what I call the carceral ecosystem – a framework that helps describe systemic issues of caging and categorizing people, impacts all parts of society from labor to childcare, to healthcare and domestic care. In these pages I will discuss how logics of carcerality and eugenics influence the care economy, including how it impacts both individual and institutional capacity to provide “care”, and how the care economy under capitalism is turned into a data economy in which care laborers like caseworkers and social workers become responsible for the collection, sharing, and use of data rather than the “care” most needed by our communities. Under capitalism prominent sectors of “care labor” become data labor, which necessitates a closer look into the ways data is extracted from and used to harm specific people, all in the name of care. To this end, I also use the term “digital poorhouse” by Virginia Eubanks (2018) to underscore the intentional and specific targeting of low-income communities.

References

Bailey, M. (2021). Misogynoir Transformed: Black Women's Resistance. NYU Press.

Browne, S. (2015). Dark Matters: On the Surveillance of Blackness. Duke University Press.

Collins, P.H. (2000). Black Feminist Thought. Routledge.

Eubanks, V. (2018). Automating Inequality: How High-Tech Tools Profile, Police, and Punish the Poor. Macmillan.

Gilmore, R.W. (2007). Golden Gulag. University of California Press.

Grach, S.L., Seltzer, J., Chon, T.Y., Ganesh, R. (2023). Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Concise Review for Clinicians, 98(10). https://www.mayoclinicproceedings.org/article/s0025-6196(23)00402-0/fulltext. 

Gustafson, K.S. (2011). Cheating Welfare: Public Assistance and the Criminalization of Poverty. NYU Press.

Jenkins, W. (2019, April 15). Unseen: Black People Living with ME. ME ACTION. https://www.meaction.net/2019/04/15/unseen-black-people-living-with-me/

Vierekant, A. & Adler-Bolton, B. (2022). Health Communism. Verso.

Yancy, G. & Lewis, T.A. (2023, Jan 8). Ableism is the Driving Force Behind All Forms of Incarceration, Says Abolitionist Talia Lewis. Truthout. https://truthout.org/articles/incarceration-and-ableism-go-hand-in-hand-says-abolitionist-talila-lewis/

(Excerpt from book draft, copyrighted)