The Pandemic, Caregiver Abuse, & the Survival of Disabled People
Written in honor of Disability Day of Mourning:
CW: caregiver abuse, elder abuse, abuse towards disabled people, ableism, mention of murder and death, neglect, the pandemic
As we enter the second year of a global health pandemic, many disabled people have been shoved further and further to the back. Our deaths are considered calculated casualties that we all should willingly accept as “that’s just what happens during a pandemic.” As if some weird Darwinism “survival of the fittest” bullshit is acceptable. The safety of disabled people is not of interest to a capitalist government that sees us as disposable. With more and more protections being rolled back, down to even wearing a mask, we have been put at an even higher risk to contract COVID and told to just “deal with it.” Even people in our lives or online have begun drowning us out for our reality is ruining their “good time.” I think there could very easily be a book written about public health response, capitalism, and disability when it comes to COVID-19 — and it actually would be extremely necessary. However, what I’m going to speak to today is something that often goes overlooked in mainstream disability conversations, especially so during the pandemic, and that is caregiver abuse.
When we look at the general definitions of caregiver abuse online, specifically Google (pictured below), it’s considered synonymous with elder abuse. But more disturbingly, in the first result, there’s a pre-emptive argument for “why” the abuse even happens as if that absolves the person causing such harm. Pictured are the very first results on Google, on February 28th 2022 at 11:34 am PST. There’s not just one problematic definition, it is multiple titles alluding to caregivers being abused by disabled people — specifically elders. Problem is none of these match the legal definition of caregiver abuse.
Due to feeling confused, this led me to look up: caregiver abuse legal definition. According to US Legal.com, “Caregiver abuse refers to abuse by the caregiver. Abuse means physical or mental maltreatment which often results in mental, emotional, sexual or physical injury. Abuse by caregiver can include deprivation of food or medication, infliction of bodily injury, beatings, oral assaults and isolation. Caregiver abuse can happen in any place that a person relies on someone’s ongoing help. It can occur in a personal care home, in a nursing or group home, a hospital, a school, in rehabilitation programs, and even a person’s home.” This is a very broad but still informative definition as we can see: caregiver abuse is not limited to the elderly and very much can fit in alongside intimate partner violence / domestic violence.
What I often notice lacks emphasis in the conversation surrounding abuse, in general, but in the case I’m speaking about towards disabled people is: neglect. I remember working at a teen to teen hotline in high school and it being drilled into us that neglect is the one form of abuse that is possibly the most overlooked and therefore, often forgotten about or not taken seriously. According to the National Adult Protective Services Association, neglect can be defined as:
“a form of mistreatment by individuals resulting from inadequate attention, especially through carelessness or disregard for the needs of others…
- Physical neglect: includes failing to attend to a person’s medical, hygienic, nutrition and dietary needs, such as dispensing medications, changing bandages, bathing, grooming, dressing, or failure to provide ample food to maintain health.
- Emotional neglect: includes causing emotional pain, distress or anguish by ignoring, belittling or infantilizing the needs of adults. This includes neglecting or discounting the emotional well being of others, as well as actions to isolate adults from visits or contact by family and friends.
- Abandonment: involves deserting the caregiving needs of an individual while neglecting to arrange sufficient care and support for the duration of the absence.
- Financial neglect: involves disregarding a person’s financial obligations such as failing to pay rent or mortgage, medical insurance or invoices, utility and garbage bills, property taxes and assessments.
- Self-neglect: involves seniors or adults with disabilities who fail to meet their own essential physical, psychological or social needs, which threatens their health, safety and well-being. This includes failure to provide adequate food, clothing, shelter and health care for one’s own needs.”
Signs can also include:
- “Sudden inability to meet essential physical, psychological or social needs which threatens health, safety or well-being
- Disappearing from contact with neighbors, friends or family
- Appearing hungry, malnourished, or with a sudden weight loss
- Appearing disoriented or confused
- Suddenly appearing disheveled or wearing soiled clothing
- Failing by caregiver(s) to arrive as scheduled — or disappearing without notice
- Expressing feelings of hopelessness, worthlessness or insignificance
- Failing to take prescribed medications or nutritional supplements
- Blaming self for problems arising with family or caregivers
- Living in squalor or hazardous situations such as hoarding or cluttering”
In fact, caregiver abuse, especially neglect, is so overlooked that many of us who are disabled do not realize we are being abused as it is happening. For many of us, we assume that we are deserving of such treatment as society also convinces us we are indeed worthless. It is also extremely difficult for us to comprehend that what is happening is indeed abuse when we are trying to survive. It’s pretty impossible for us to fathom and accept that someone we love is actively getting in the way of that and the care we deserve.
There is a reliance many of us have on our caregivers to help transport us to our appointments, to be present when we have visits with medical professionals, to help with medications, to help with keeping our spaces clean, aiding us with basic day-to-day needs such as showering, cooking food & helping us eat, and more. Realizing what is happening can also be extremely hard when the abuse is coming from someone we not only love, but who many of us live with, who we depend on so even the little sliver of “care” we may receive here and there is far better than being alone. Especially during a pandemic, we will rationalize the abuse even more so as something is better than nothing and nothing would be us alone, fed to the wolves. We perceive ourselves as burdens and will often silence ourselves in the face of abuse.
Unfortunately, with the onset of the COVID 19 global pandemic in 2020, many disabled people found ourselves even more reliant on those who care for us. To be clear, that doesn’t mean there were not people who needed the same exact amount of help pre-pandemic as they do now — I’m speaking to what another percentage of the disabled population experienced. Many of us became unable to work in the same capacity we used to, have had to forcibly isolate ourselves to the best of our ability, and we often have felt as though we are possibly more reliant on others.
Disabled and immune suppressed people are part of the extremely vulnerable populations who when contracting COVID, experience far more complications, hospitalizations, and deaths. Many of us continue enduring different forms of abuse from caregivers because, as we know, there is already little support in existence for victims of abuse. Now throw in being disabled / immune suppressed AND a pandemic — like I said before, fed to the wolves. So many of us: stay. And staying has its own consequences, ones no person should ever have to experience or take a “gamble” on when it comes to their own safety.
The image of the caregiver is championed as heroic beings who are so “pure” and “sweet” for taking care of disabled people: whether relatives, lovers, friends, or as part of work. Caregivers are seen as selfless individuals who experience burnout because disabled people are so demanding. That’s not to say burnout cannot happen and that caregivers do not shoulder a lot of weight. The perfectly crafted caregiver is usually the image and logic that will inform headlines surrounding abuse that escalates to death / murder. Somehow, we are immediately told to empathize with the caregiver alone for being driven to the edge of themselves just “trying” so hard to keep another human alive.
Meanwhile the disabled person who has experienced the harm, who has been murdered, who is now dead is more often than not: portrayed as high maintenance, relentless, exhausting, and even at times: entitled. Do these headlines even become national news? Hardly ever. But still it remains in limited media coverage: everything becomes about the caregiver as opposed to the real glaring issue: society pushes the disposability of disabled people as acceptable. Seeing these headlines, reading these stories, do have an impact on the disability community, especially those who’ve experienced caregiver abuse, for it shows us how we would be remembered if the narrative was written on our behalf.
This isn’t to say caregivers have a plethora of resources or that they can’t be disabled themselves, that is not the point of this piece. The point is that those factors don’t suddenly provide an “explanation” that absolves abuse — yes, even during a pandemic. Our relationships to one another are deeply impacted in a settler colonial society. The ways in which we relate to ourselves, each other, and the world at large are heavily impacted. None of that makes it okay for abuse to ensue. In many of my pieces, I emphasize the importance of communal care. Now more so than ever, I’m saying it again: if we don’t attempt to take care of one another buy building solidarity networks, by prioritizing our most vulnerable within our communities and organizing, by holding one another accountable, then we are going to swallowed whole in the belly of the beast: the amerikkkan empire. Truth be told, we aren’t *meant* to survive under capitalism if we are colonized peoples, disabled, LGBTQIA+, working class, houseless, and so on and so forth.
However, just because we are told we aren’t supposed to survive, does not mean we can’t try to ensure one another’s survival. I don’t have all the answers, nor do I claim to. But I do know, one step in this whole process is taking a moment, taking a beat to interrogate the ableism we all hold inside ourselves, and ask where it comes from, how did we come into contact with it, and how can we reframe our thoughts and actions to be in alignment with disability justice (Sins Invalid: 10 Principles of Disability Justice). Not just in theory but in praxis. That is frankly going to look different region by region, state by state, hell city by city, and neighborhood by neighborhood. Surviving abuse extends beyond leaving the relationship, surviving abuse happens during those relationships, when we safety plan, if and/or when we leave those relationships, and long after in the aftermath. The amount of material support needed cannot be undermined or assumed. It evermore remains: ain’t none of us getting free, if liberation is only prioritized for a select few & for too long, disabled people have been placed on the back burner.
For Further Reading: Beginner’s Guide to Disability
Capitalism and Disability by Marta Russell
10 Principles of Disability Justice by Sins Invalid
Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha *especially the resources and further reading section*
Disability Visibility — edited by Alice Wong / Disability Visibility Project
Resources:*naturally we all have complicated relationships with the state and police so please be mindful while reading that I did not write these, also there’s very limited resources, if anyone wants to add more, feel free to comment*
Creative Interventions Toolkit → I have personally used this and have recommended it
Disability Safety Planning → while specific to PA, it still brings up helpful points and things to consider when creating a safety plan
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