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Hi everyone, and good morning. Um, if you're joining here or this presentation in person, just wanted to thank you for being here. Thank you for waking up early. I know for us, a lot of us who are disabled or chronically ill, it's really early, so I do appreciate you all for joining. And if you're catching this on video, thank you so much for taking the time to watch this or listen to this.

My name is Victoria. I'm a social worker by trade, and I'm also a disabled person who is bed bound and has a fun assortment of chronic illnesses, so I'm just happy to be included today. And I just wanted to start us off with an understanding, or rather maybe a conversation, about rest and this idea about self care.

So on the screen you will see an assortment of different headlines, and some of these may sound familiar to you: "reclaiming rest, why black women deserve to prioritize themselves"; "rest or rot, too much bed too little health, guardian article"; "I rested my way to recovery from long covid, I urge others to do the same"; next, "A new study explores the transformative power of deep rest; and one of my favorites from the nap ministry, rest is a form of resistance because it disrupts and pushes back against capitalism and white supremacy".

And so as you're reading or listening to these different headlines or quotes, you might think, yeah, I've definitely heard these things said to me before. I've probably said them myself, and I resonate with some of them. Some of them sound kind of ableist, but something I've been thinking a lot about is how a disease like ME/CFS really deepens our understanding of rest and how it's connected to our understanding of care.

That brings me to this article by Trey Washington that was published in Scalawag, and the title is "Rest Is Not Resistance and That Is Okay". It was published on March twenty eighth, twenty twenty four, and there's a screenshot of the magazine cover which has a black person sort of leaning over the kitchen counter, just taking a beat, taking a rest, taking a pause, and they're in the kitchen.

And you know, before I was bed bound, I was an organizer, I was in the streets protesting. I was also a doctoral student, and I was always told, you know, you need to rest and rest is the way we fight back. And not that I disagree with any of those sentiments, but I was so tired of rest being tied to labor in a way, or work, or just being tied to something at all times. Why couldn't I just drift without it being tied to more demands, more extraction from me? And it just felt so individualistic. And again, this is no shade to people who really highlight that rest can be empowering and resistance and all of these things. I definitely agree, but there's also an aspect of rest that can sort of ignore how individualistic we use it sometimes, especially when someone is disabled.

And so I read this article by Trey Washington. I thought it was so beautiful. I encourage people to read it. And the subtitle is On Cancer, Grief and Audre Lord. It really got me thinking about what is needed to rest. How do people with diseases like mine conceptualize rest? And we'll get more into that. And what does rest look like when it's not tied to a liberation or a fight against white supremacy? And again, I'm gonna say this a bunch, this is no shade. I love the nap ministry. I love that we're encouraging each other to rest, but I just wanted to deepen our conversation about it, particularly in the way that disabled people and people with chronic illnesses navigate it.

Presentation: So this, the title of my actual presentation is called When Rest Isn't Resistance: Lessons About Rest and Self Care From People With M E C F S, or Myalgic Encephalomyelitis. On the cover page here is a bed and a bird cage kind of situation to really encapsulate some of the things that I'm going to talk about.

Overview: So as an overview, this presentation is going to dive into some preliminary results from an ongoing open ended survey I have going on right now that's focused on Myalgic Encephalomyelitis. I'm taking basically a snapshot of the sample, which right now is at two hundred and two people, with most of those people being severe. And the presentation is gonna really talk about how people with mecfs provide insight into rest, reconceptualizing rest, or expanding our ideas about rest and care, and how to live out disability justice principles.

Study Design: The study design, so just some of the technical things: there are three surveys that are part of the study. There's a low energy survey, a general survey, and a provider survey. I split the people with mecfs survey into two versions. One is tailored more to people with lower energy thresholds, so really focusing on not provoking pm, and there is a reduced number of questions. So there weren't any questions specifically about experiences of pm, just because we know that people who are more severe can have p m provoked by less, including emotional exertion. So I did minimize the amount of questions there.

And then there's also a focus on transparent informed consent. So the number of questions, type of questions, were all included in the informed consent. People had options to choose between low energy or general. And if you were a provider of medicine or healthcare and you have worked with people with me cfs, those were also included. I'm not sharing results from the provider survey, but just wanted to give some context.

Study Demographics: And these are the study demographics for the low energy and general survey sample combined. Most of the people who participated in the study did have severe form of the disease. So we have forty two percent severe, twelve percent very severe, one percent extremely severe, forty three percent were moderate, and four percent were mild. So I thought it was really interesting that a lot of people with severe mecfs contributed to the survey.

Disease duration was also very interesting. Forty percent of the sample basically have had amy for one to five years, and thirty two point five percent had amy for more than ten years. So two different sides of the spectrum, but I thought that was really interesting, and it speaks a lot to having a shared experience when you see the results coming up in the following slides. For other identities, sixty one percent of the sample was identifying as lgbtqia plus or gender diverse, and only thirteen percent identified as racially minoritized. And yeah, I thought that this is a really interesting sample of people with ME.

Patient Centered Research: Just a quick note about patient centered research and why it matters. Patient centered research can help destabilize the normalization of abandonment. In other words, it disrupts the idea that lack of treatment is normal. It disrupts the status quo, provides counter knowledge. It also provides insight into real world experiences and disease burden. So what does this actually look like day to day, to have this disease? And last but not least, it helps contest problematic treatments, treatments that harm not help. It gives some testimonies and experiences with various treatments and how people with mecfs are navigating this landscape.

Content Warning: So there is a content warning. If you do have mecfs or just energy related diseases or you're chronically ill or disabled, some of the content we cover may be triggering. It does talk about physical emotional discomfort, loneliness, isolation, things like that. So please take care if you need, turn this off if you need, or step out if need be as well.

What is ME/CFS: So what is mecfs? I know this is a bit backwards, we're kind of working backwards here, but what is mecfs? According to a cme continuing medical education course or article that came out by Grach et al., mecfs is a chronic neurological disease. And there are estimates that between one and two point five million people in the us alone are impacted. And this disease also remains one of the least funded diseases. To the left you will see a picture of me when I was earlier in my mecfs journey, with my still sick still fighting tank top on and eye mask cover on as well.

So part of mecfs, a unique characteristic of the disease, is post exertional malaise, or pem. And this is defined as a flare in symptoms or appearance of new symptoms after exertion, often presenting after twelve to forty eight hours. And as for the cdc, patients must also present with fatigue and refreshing sleep and orthostatic intolerance or cognitive impairment for diagnosis. And I did use the cdc guidelines for mecfs for inclusion in the study, whether self diagnosed or diagnosed by a medical professional.

PEM quotes: I thought it was important that when we talk about pem, we are giving real world examples. And so I wanted to include a few notes from my study about what pem feels like.

The first quote says it's like a deep in your bones kind of tired, unrelenting. It's like I've spent everything inside of me and there's nothing left to give, nothing at all.

Second quote, feels like being poisoned, limbs heavy like concrete, brain feels inflamed and full like it can't handle anymore, eyes get puffy and sensitive, body and brain desperately want nothing, no stimuli, no movement.

Next quote, pm is without doubt the worst feeling I've ever experienced. In its worst form, it feels as if my veins are filled with concrete and I will never be able to move again. Even during milder episodes of pm, I have intense feelings of impending doom and depression. I only experience depression during pm, and it's often the first indicator.

The last quote, torture, poison my body like I am dying, like I am getting the flu, like I have been hit by a big truck, like my body is getting pulled apart at every limb, like I can't catch my breath and my heart is going to beat out of my chest just from sitting up or going to the bathroom.

And so while we talk about pm being just a flare up of symptoms, it's really important that we understand what exactly patients are feeling on a physiological level, a psychological level, everything. And I feel like the quotes that people provided really illustrated this.

Pacing: What is interesting about having mecfs is that, unlike able people, able bodied people as well as people without energy limiting diseases or disorders, they may not have to think about rest so often, and rest is often restorative for them. But for people with this disease, who have things like pm, rest is so consuming. It takes up all your time. It's what you schedule your entire life around.

And this screenshot on the screen right now is talking about pacing. So it says, stop. Stop what you're doing before symptoms start or as soon as you notice symptoms getting worse. Rest. Take regular rest breaks during the day and while doing activities. Pace. Break activities into smaller parts and rest in between. This helps your energy battery recharge. Everyone is different, so take time to learn how much you can do and how much rest you need.

Some questions to consider: how much rest do you need to recharge? Are you getting enough? Are you constantly draining your battery without taking time to charge? Do you need to build in more rest time?

And so this is nothing, there's nothing negative I have to say here. It's just to point out that rest is so central to every single aspect of our day when you have mecfs, and it's not necessarily something that is meant to restore or make you feel better, but it's something that is needed because your body is just not functioning how it should be. And so these are constantly the things that people with this disease, my disease, are thinking about.

Finding 1: And when I asked people in the survey, your first initial reaction, when I say rest, what does that bring up for you? How does it make you feel? Most people who took the low energy survey reported that the first emotion they think of when it comes to rest is solitude and loneliness. And these feelings of solitude and loneliness were most often accompanied by sadness and stress or anxiety. And you see here how this is completely contradictory to how we talk about rest normally. If you remember going back to the first slide, it talks about the transformative power of deep rest and how rest helps us recover and how rest is a form of resistance. But when I asked people with mecfs, this disease, they said it makes me feel solitude and lonely and sad and stressed and anxious.

And when we dive in more to the quotes, this is what people had to say.

The word rest makes me feel very tired in itself. I'm apathetic and tired about it. And that was a person with moderate mecfs.

The next quote: resting and pacing is now my whole life. Sometimes I'm so tired that even when lying down I wish I could lie down to rest. I have to rest after anything I do. I miss not having to rest. That was a person with severe mecfs.

Next quote: rest feels like both a needed thing and a jail cell. A necessary evil, something unavoidable that should bring happiness and comfort, but it doesn't. My whole life revolves around resting. That was a person with very severe mecfs.

The last quote: letting go of control and turning off. Sometimes it is relaxing, but when I'm too tired or crashing, it feels almost violent to rest. And that's a person with extremely severe mecfs cfs.

 Finding 2: When I asked, how would you define rest in terms of all of these things that we are constantly hearing? What is rest to you? The number one option people picked was rest is something I have to do. Second, which was a close second, was rest does not feel restorative. And three, rest is not the same as sleeping. And I thought this was just, again, so interesting because it's sort of counter intuitive in a way. You would think rest is extra and rest is something that feels good and it helps, but for people with the disease, that's just not really always the case.

Finding 3: So next I asked about, okay, well what are the barriers you experience that prevent you from resting? Because even if rest is not something we like to do, there's still things that get in the way of it, even though our body so desperately requires it. So what are those barriers? What do they look like?

From the full sample, so people from the low energy survey in general, the number one was physical symptoms or experiencing pm. So having physical symptoms, pain, discomfort, agony, that got in the way of rest, which creates more p m. So it's just this cycle of continuous suffering. Number two is caregiving and parenting obligations. People with this disease, they have full families. Some don't, but a lot do, and a lot also have children. Some are taking care of other disabled family members. Some have pets. And so caregiving and parenting obligations were second.

Third was financial constraints, not having enough money, not being able to afford doctors appointments and medicine and just food, a roof over your head. And four was having no relational support at all. So people who don't have a significant other, a partner, parents to rely on, siblings.

Findings 4: Next I asked, do your friends or family understand rest and energy limitations? Sadly, fifty three percent said sometimes, and twenty nine percent said no. Only sixteen percent of people with mecfs in the study said yes, their friends and family understand rest and energy limitations.

Discussion: So what does this data tell us? People with mcs experience a variety of consequences from medical abandonment, navigating physiological torment on top of limited relational and monetary support. So again, a lot of this is coming from me cfs not being treated as a serious condition and not getting the medical attention that it requires.

People with mecfs are advised to adopt individualistic management practices as a means to survive. So we're not told to rest to heal, to restore. We're told to rest to survive because there are no other treatments. There are no other options. And so few people understand, even our loved ones.

What else do we know? Mainstream treatments for mecfs are not treatments. Telling people with mecfs to just rest is not, that's not a treatment. Treating mecf is a priority, and so is dismantling the structural, societal, and relational inequities or issues that make it difficult to navigate the world as a person with mecf. So it's not just that we have to treat me, but we also have to dismantle these different structures and inequities that make it really difficult for us to survive.

Disability Justice: So for those of us who do not have the power to create the treatments, there are better ways to show up for people with mecfs. That brings us back to the sins invalid disability justice principles that we're going to be focusing on. And there are ten of these disability justice principles: commitment across disability solidarity, leadership of those most impacted, collective access, intersectionality, sustainability, interdependence, anti capitalist politic, collective liberation, recognizing wholeness, and commitment to cross movement organizing.

The few I'm gonna focus on today that I think are especially relevant to the study are these here: commitments across disability solidarity, interdependence, collective liberation, commitment to cross movement organizing, shifting how social justice movements understand disability and can sexualize ableism, disability justice lens itself to politics of alliance.

Finding 5 & Cross-movement Organizing: So an additional finding was that when asked what types of supports people need, they said relational caregiving support as number one, pacing schedule flexibility as number two, and financial support income security as number three.

So how do other people organizing in these spaces show up for each other? Well, you can do that by learning about the disease and providing relational caregiving support. So it's not just about helping advocate for changes to get us funding for the disease, but actually physically and through online networks and things like that showing support relationally, helping us be not just understanding but accommodating, and making accessible spaces that allow for pacing and scheduling flexibility, and also showing up in terms of finding ways to provide financial support and income security.

So there are so many different ways that we can really honor mecfs from different spaces across other disabled organizing spaces, racial justice spaces, economic justice spaces, immigrant rights and justice spaces, things like that.

Committment to Cross-disability solidarity: Commitment to cross disability solidarity as well. We honor the insights and participation of all of our community members, knowing that isolation undermines collective liberation. Again, when we take into account people with this disease, we can really come to an understanding that we can't just tell people with mecfs to "take care of themselves" and "self care and I'm so glad you're resting", "rest is resistance". We have to really think about how saying those things might be harmful to somebody with disease.

But more than that, or in addition to that rather, how do we make our spaces more accessible for people who have energy-limiting diseases? Even within disabled advocacy spaces, are we providing ample opportunity for a wide range of communications? Are we giving ample time to review things and contribute to things meaningfully, not just as an added, but actually meaningfully crafting spaces for people with mecfs to participate and feel part of? and this is so important because as we saw earlier, so many people with ME/CFS struggle with isolation to begin with. and so it's really important for us to think about youknow, how do we bake in accessible spaces for people with Myalgic Encephalomyelitis even if we are already working from a baseline of, everyone here is disabled uhm our disability might look different and might require additional planning and consideration.

Interdependence and Collective Liberation: And this obviously relates to interdependence and collective liberation. And these are defined as we meet each other's needs as we build toward liberation, knowing that state solutions inevitably extend into further control over lives. No body or mind can be left behind. Only moving together can we accomplish the revolution we require.

So again, just really thinking about how can we together not just think about rest as self care or active resistance or yada yada, but how do we actually make it easier for people whose lives revolve around rest as survival? How do we make it easier for them to do that? How do we make it easier for them to survive? And in many cases, this is life or death for people with mecfs. How do we make it easier for people with this disease? How do we meet their needs? And in doing so, that creates relationships, that creates trust, that creates new ways of thinking about revolution. But we can't even get to revolution or fighting white supremacy if we're constantly not even able to meet our bare minimum requirements of survival.

Ending: Self care is not possible without collective care. That is one of the number one things I want you to take from this. Self care is not possible without collective care. As you saw from the findings, so many people with mecfs are suffering because they don't have adequate supports, whether that's financially, relationally, institutionally. It's a group of very abandoned people, and I am included in that group.

And so when Trey Washington was saying rest is not resistance and that is okay, it's really not just a statement, but it's a call to action. How can we collectivize rest, collectivize care to get us to be able to rest? How do we make it easier for each other? How do we show up for each other? How do we support each other? Again, self care is not possible without collective care, and collective care requires real solidarity. Show up for people. How do we do that? That requires real solidarity.

That is the end of my presentation. I know it's a little scattered, but I hope that it was helpful and provided some insight, rethinking rest as not just an individual act, but an act of collective care and solidarity. Really grateful for the opportunity to speak about this. The study is still open, and I'm looking forward to discussing more of those findings soon. And yeah, I just appreciate you all for listening and for being here. Thank you.

Citations:

1. Rest is Not Resistance, and That is OK - Scalawag

2. Grach et. al (2023)

3. Emerge Pacing Framework

4.  Sins Invalid 

Full video: https://youtu.be/pR6GoPogTwM?si=XP6COp3P3EXR4FcW

(almost verbatim)

Slide 1

Slide 1 Description: The title slide says "ethics in long covid research design" in blue and purple colored font. Underneath it says V. Copeland, Ph.D, MSW with input from Catherine Romatowski and individuals in the tired and wired and recover representative groups.

Audio transcription: Hello my name is Victoria and I wanted to thank the organizing team for inviting me to speak today. Im a policy researcher and social worker with a PhD and masters degree and I’m here today to share some points for reflection from myself and other people with severe manifestations of long COVID. Thank to Catherine and the other groups for feedback on this presentation.

Slide 2

Description: The title says Stats in purple font. On the side there are citations. The stats are as follows: 

• - One of most frequent symptoms after 6 months is post-exertional malaise (n=3762)
• - RECOVER Index PEM was prominent in all but one “subtypes” (n=13647)
• - Health outcomes study 36% of hospitalized patients reported PEM after 3 years 
• - In a RECOVER study (n=13224) people who had COVID-19 were ~ 5x more likely to meet diagnostic criteria for ME/CFS compared to those who did not.

Citations:

1. https://pubmed.ncbi.nlm.nih.gov/34308300/
2. https://jamanetwork.com/journals/jama/fullarticle/2828329
3. https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(25)00082-1/fulltext
4. https://link.springer.com/10.1007/s11606-024-09290-9

Audio transcription: Today I’m talking about clinical long COVID research and post exertional malaise. For those new to the term, pem is often defined as the prolonged worsening of symptoms following exertion whether that exertion is physical or cognitive. This is not just a form of exercise intolerance. It a serious adverse reaction to exertion and a serious condition. Pem can be temporary but it can also cause permanent worsening of one’s condition. Symptoms can include: syncope, seizures, severe. Neurological disturbances, excruciating pain and muscle weakness, nausea, and extreme sensory sensitivity. According to the research pem was found to be one of the most frequent symptoms following a COVID infection, with patients even reporting pem three years post acute infection. So Why is this important?

Slide 3

Description: title says Stats "Inclusion in Long covid trials" in blue and purple font. Under the title it says who are we missing? And why does it matter?  To the side is a rectangle with three parts. At the top of the rectangle is a green box that says no PEM, accessible. Beneath is a yellow box that says moderate PEM. Access considered. PEM inevitable byproduct. Beneath is a red box that says severe PEM. No access, non inclusion. On the side of the rectangle is text that's says this image os a hypothetical and not based on any research. The bottom of the slide is a citation box: https://www.mdpi.com/2075-4418/9/1/26.

Audio transcription: Well if we know that many people with long COVID also experience pem it’s very important that we take this into account when designing research.  this should not be just an afterthought for researchers but should be considered and planned for when designing trials from their conception.  one study shows that 67% of people with Myalgic Encephalomyelitis report crashes that never resolve. And this is vital information to know as we craft new clinical research. 

Here I’m highlighting that people with severe pem, meaning they rarely leave their homes or beds, are often fully excluded from trials. Further, upon hearing testimony from people who have pem but are not fully home or bedbound, they also have to expect pem as an inevitable byproduct of participating in a clinical trial. Although access may be briefly acknowledged by researchers, it is not baked into the research design and thus people with moderate pem risk permanently worsening just to participate in a trial and potentially be helped.

 If people with long COVID and severe PEM are largely stuck in their homes or beds and excluded from trials, is the long COVID research as it stands representative of the full population of people with long COVID? If not what and who are we missing? Further, is it ethical to knowingly conduct trials that may cause long term health consequences ? 

I pause here to acknowledge that Of course this is a difficult discussion to have. many patients fear speaking up for fear of losing the ability to participate in a trial and others fear that they cannot speak up about accessibility when there’s so much political pressure and controversy  around funding long COVID research in general. Patients with severe pem are stuck between a rock and a hard place. And I know some researchers are trying their best to navigate this contentious landscape.

Slide 4 and 5

Description: Just text below. Citation box to the side: 

https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html#xbenefit. 

Audio transcription: But this is still important for us to figure out. I wanted to take us back to the Belmont report. If you have a doctorate you have heard of this before but for those who may not know, in response to  the  violence of the Tuskegee experiments, the National Research Act of 1974 was passed and the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was created. The Belmont report came from this commission in efforts to set guidelines for research involving human subjects.  

One of the three ethical principles in the report is beneficence. Under this principle it states that: 

"Persons are treated in an ethical manner not only by respecting their decisions and protecting them from harm, but also by making efforts to secure their well-being"

"…beneficence is understood in a stronger sense, as an obligation.”

(1) do not harm and (2) maximize possible benefits and minimize possible harms."

Additionally it states that:

“investigators . . .  are obliged to give forethought to . . . the reduction of risk that might occur from the research investigation”

“Risk can perhaps never be entirely eliminated, but it can often be reduced by careful attention to alternative procedures.”

I bring up this point to say that it is not just medical doctors who are responsible for upholding just and equitable care for their patients, but also researchers who are obligated to ethically navigate the risks and benefits of all research involving human participants.

This is not to say that trials should not be happening, but that we may need to become creative about the ways we engage in these trials, as we are dealing with a population of people who are incredibly ill and vulnerable to worsening without proper care.

Slide 6

Description: The title says prioritizing the individual. There's a picture in the center of an unbalanced scale with the left heavier than the right. To the left is text that's says: planning for confounding variables, internal and external validity, and finding constraints. To the right is text that says planning for: well being of trial participants, long term health impact.

Audio transcription: And yes of course this does not happen in a vacuum. It’s important for us to remember that researchers have to contend with planning for confounding variables, and the validity of findings. However we also have to weigh the well-being of patients which is what beneficence is pointing too. I have been on a call before where researchers were saying they cannot provide certain accessibility measures due to potentially muddying the data. However we also need to back these claims with science. 

To what extent will providing access impact the validity of the findings? Is that reduction in validity (either potential or proven) worth potentially disabling a participant by causing repeated or prolonged pem? These are the questions I am hoping researchers sit with.

Slide 7 & 8

Description: Just text as below. The title says beneficent action. 

Audio transcription: Here are some ways that patients have expressed we can reduce pem in trials. 

Reducing exertion: 
More capacious framework for time allotment, while acknowledging trial urgency. Here this is speaking to the need to understand that people with pem need more than one or two days for testing. Making patients choose between a 5-6 hour day of testing or two days of 3-4 hours of testing each may not actually be ethical when we are speaking of people with moderate or severe PEM. That is because even an hour of testing can cause a severe episode of pem. Several hours and back to back days both have ramifications on ones well-being that should be considered.

Use of mobile phlebotemy and at home tests and Requiring PPE at testing sites, and proper ventilation. I am shocked that it has to be stated so often but Infecting someone with COVID at a long COVID trial is just extremely offensive and violent and should not be happening. Providing lists of community resources upon visit. Multiple versions of consent, including plain language, written, and spoken prior to visit. Compensation for least exertional transport to site whether train, rideshare, gurney or wheelchair.

Slide 9

Description: Slide says thank you for watching and listening.

Audio transcription: I hope these questions and points raise some discussions about making more ethical trials and thank you for your time.

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)

During grad school my medicaid was denied. After months and months of no insurance i finally got a court date, the final level of appeals. At the appeal i asked the judge where all of my sensitive documents went, he said "good luck finding that out". My experiences as a consumer of social services played a huge role in my interest in social services/data during graduate school.

In the U.S. we have normalized the unregulated use, storage, & sharing of data to the point that handing over a multitude of sensitive documents to a caseworker has become unquestionably normalized. Agencies retaining data for decades is normalized. It is near impossible for a consumer to track where their documents are and who has their eyes on them. This is because biocertification has become embedded into the social fabric of our society. Caseworkers are often caught in the middle of this. The push to automate and "AI"ify (see budget reconciliation bill) decision-making processes for "efficiency" make the work of caseworkers more difficult and more precarious, not the other way around.

Pouring $500billion into data infrastructure will make them more efficient yes, but not in the ways that workers OR consumers need. What will happen? We have seen it before. More cases will be erroneously flagged for case closure, more humans will have to fix these errors. More appeals will back up the system. In accordance w/ the budget reconciliation bill and the provisions to increase the frequency of verification's and add work requirements, more doctors will have to spend time going through documents, and more caseworkers will have to increase their already burdensome caseloads.

Many proponents of AI try to convince the masses that automated decision-making is both inevitable and immensely helpful. But in the realm of social-services-under-capitalism, they are first and foremost biocertification tools that operate under eugenic logics. They perpetuate the stratification between the undeserving and deserving poor simultaneous to extracting labor from the working surplus (including caseworkers who largely work low wage labor). They make life so very difficult for so many low income consumers and workers.

Right now I am trying to meaningfully write about the proposed changes to the ACF - Administration for Children & Families written in Pr*ject 2025. I have found it difficult to articulate how often misogynoir is at the root of policy changes that specifically target the broader trans community. The hatred of Black people and specifically Black women specifically has been a driver for government policy, the paradigms in Pr*ject 2025 are a recapitulation of what we already know. I do not believe you can or should fight for trans rights without fighting against anti-Blackness. They have always intersected.

As Spillers states,

“Under these conditions, we lose at least gender difference in the outcome, and the female body and the male body become a territory of cultural and political maneuver, not at all gender-related, gender-specific. But this body, at least from the point of view of the captive community, focuses a private and particular space, at which point of convergence biological, sexual, social, cultural, linguistic, ritualistic, and psychological fortunes join. This profound intimacy of interlocking detail is disrupted, however, by externally imposed meanings and uses…”.

C Riley Snortons conversation with Spillers work, and their focus on “uncensored flesh” is what I am currently diving into so that I can better appreciate and articulate this discourse around gender fluidity, racialization, and the mechanisms of upkeeping a captive flesh via policing.

Digression aside, I  say that Project 2025s aims are a recapitulation, due to the lineages of suffering that stemmed from the transatlantic slave trade, much of which we already experience - including that which has flourished from the seemingly mundane (to non Black folks) policy changes of the 60s, 80’s, & 90’s.

Right now I am honing in on the 60’s — a time when in response to desegregation jurisdictions, particularly in the south, were attempting to creatively destabilize the Black family by instituting several new criminalization measures/tactics, ie: diminishing ADC access by deploying suitable housing & parenting requirements which were enforced by welfare workers via raids. Too many Black women on AFDC meant having to find new ways to kick them off it. The focus on waste and fraud became more prevalent and necessary to uphold the white supremacist order. Segregationist, in retaliation to the freedom rides, pushed Black women out of their cities by claiming they were lazy, aid-dependent, & draining the community. Moynihan's cementing of this discourse in “tangle of pathology” paved the way for Reagan’s obsession with Linda Taylor & the welfare-queen-dramatics-turned-full-fledge-policy-agenda. The goal was and continues to be domination of the white cis-nuclear family, & anti-Black racism drives this.

As evident in Pr*ject 2025, there is still an effort to solidify this image of what is a “healthy”, normative,  “productive” family. As this posts describes, this has been the case decades prior to Trumps second election. It has surfaced in significant ways locally. In my dissertation work I found that Los Angeles, as of 2020, has had a “red flag” warning for mothers who have a boyfriend living in their home . This red flag was suggested by the LA Civil Grand Jury. Single Black and Latine mothers in LA talk about experiencing this in real time through additional surveillance from caseworkers and even having to sit through interrogations abut their sex life — as teenagers. I have no doubt that this has been occurring throughout the country. 

But why is this all important to remember now? Because solidarity and cross movement organizing is what is going to keep us alive. Back when legislation passed in Florida to criminalize gender affirming care, making it a reportable crime by child maltreatment agency workers, caseworkers stepped up to outright refuse to comply. But once legislation started to change for the better, those caseworkers went back to business as usual, dismissing all of the presently-normative ways that they still harm of the youth in the system. It is this way because these youth are disproportionally Black. Even if they are trans, they are seen as Black first, making their suffering less critical and urgent. In 2025 we have to care about Black liberation, even when it’s not convenient.

My first pitch since 2021 was just published by the Forge! This piece was inspired by my friends with Myalgic Encephalomyelitis who have expressed feeling left out of post-election organizing spaces due to inaccessibility. I love you all and am so grateful to have the support from such a loving community. This piece is about grief, severe disability, and community.

If you're seeing this, I am on a medical break due to a procedure planned on Monday 2/24. Keep me in your prayers as I navigate a crucial month (including possible biopsies in March) for medical care. 

luv,

v