I’m fascinated by the animosity that flares up between care workers and the people they provide care for. At the most cursory of glances, it would seem that they should be on the same side, if we are going to choose sides.
Of course, this falls apart under the slightest hint of scrutiny.
Maybe my hobby is taking simple things and making them as complicated as humanly possible. Hopefully this trait is more charming as a newsletter than it is in my personal life.
This tweet caught my eye as I was reading Anne Helen Petersen’s Can’t Even: How Millennials Became the Burnout Generation:
In Can’t Even, Peterson writes that “the idea that you should make money from the things that give you pleasure is societal.” To be a millennial is to feel pulled to monetize everything that matters.
Do you cook well? You should start a catering business out of your kitchen! Have a good eye for color and pithy captions? You should become an #influencer! Found assembling your IKEA haul satisfying? Sign up for TaskRabbit! Lost 30lbs? Become a personal trainer! Enjoy hosting guests? Rent out your spare room on AirBnB and curate ‘experiences’! Always been good at math? Start a side hustle as a tutor!
Anything worth doing is worth being the best at. Anything worth doing is worth optmizing. Anything worth doing is worth getting paid for.
Care work seems like a lone holdout in the monetization of life.
What else in life do we hold to be irrevocably tainted by money? What else is it viewed as morally wrong to be paid for? I have gone so far down the rabbit hole of care work, sometimes it’s difficult to get my brain onto other topics.
It’s unfortunate that monetizing care work remains taboo. Providing unpaid care work can be incredibly costly. Just as freelance writers and designers cannot pay their bills with the exposure provided by unpaid gigs, care workers cannot pay their bills with the heartwarming moments and life lessons of care work.
Petersen’s latest Vox article clarifies the costs of eldercare:
"Laura found herself with a decimated retirement account, no other savings, and no income. “I’m 63, and need to find a job,” she said. “But who wants a 63-year-old? I can’t even manage to put together a decent résumé. I’ve gone from a strong, confident woman who could handle anything to someone who can barely function.”
Over the past eight years, Laura lost much of her support system; she couldn’t go anywhere, couldn’t socialize, couldn’t maintain friendships. She can’t remember what her family used to be like and keeps replaying scenes in her mind, wondering whether she could have provided better care. “It’s a weird sort of amnesia I’m left with,” she said. “I think this is PTSD."
I often find myself wondering where caregivers belong in the world of disability. The divide between caregiver and disabled can be illusory. Many of the “caregivers” in our support groups have the same conditions as the “care recipients” of other caregivers.
I’m skeptical about the oft-cited statistic about how many caregivers die before the person they’re supporting. Still, it is clear that taking on the role of caregiver can be disabling. The traumatic experiences of care work haunt us in ways that are diagnosable as disabilities. Types of care work are physically demanding in ways that have high rates of injuries.
Like the classic example of defining a chair, the more I try to pin down who is disabled and who is a caregiver, the more the whole thing turns to mush in my mind.
When I was with someone with a disability, who did not identify as disabled, both of our lives were limited by the lack of accomodations and her abilities, because our lives were tied together. Certain things were effectively not options if they weren’t options for both of us, either because they weren’t viable or because they simply weren’t worth doing alone.
When working in a “traditional” full-time job is not an option, we turn to monetizing our lives. Enter the side hustle. In Petersen explains:
“In today’s economy, though, it’s often a privilege to ‘protect’ one’s hobbies from monetization. Jimmie, who lives in southern Wisconsin and describes his class position as “not homeless anymore and owns a home,” works eighty to one hundred hours a week patching together gigs in broadcasting, social media, digital content creation, and design. “I’ve monetized almost every aspect of my life that isn’t being a parent, and I’m a couple medical bills away from starting a dad blog,” he explained. “I even broadcast my video game tournaments.” He’d love to keep things to himself, but he has two kids to support. “We need money and I don’t have time to waste being unproductive,” he told me. “It’s not as fun, but we have a roof over our heads.”
Later in Can’t Even, Petersen writes something about motherhood that could easily apply to anyone who needs care:
“Children, themselves, aren’t social problems. Children are great...But the current organization of society — of school, of work, of the way gender intersects with both — turns children into mini-life bombs. Not them, exactly, so much as the expectations and financial and labor realities that accompany them.”
That is the burden of having a disability and of having the privilege to grow old. Our social and economic reality takes these aspects of the human condition and transforms them into mini-life bombs.
Can something be an act of love when it’s compulsory? When we have been coerced into it, regardless of our own needs and abilities? When there are criminal penalties for failing to do it? When the suggestion that it has too high a cost shifts us from saint to sinner?
Monetizing the things that are meaningful and enjoyable does taint them, as Petersen explores in Can’t Even:
“A monetized hobby might be periodically enjoyable, but when the activity becomes a means to an end — whether profit or perfection or entrance into school — it loses its essential, and essentially restorative, quality.”
Which leads us to burnout:
“A reckoning with burnout is so often a reckoning with the fact that the things you fill your day with — the things you fill your life with — feel unrecognizable from the sort of life you want to live, and the sort of meaning you want to make of it. That’s why the burnout condition is more than just addiction to work. It’s an alienation from the self, and from desire. If you subtract your ability to work, who are you? Is there a self left to excavate? Do you know what you like and don’t like when there’s no one there to watch, and no exhaustion to force you to choose the path of least resistance? Do you know how to move without always moving forward?”
The taint of money is hardly the only road to burnout. When we are so rushed that we are treating the people we care for as objects to be acted on, as the personification of needs, as tasks on our to-do lists, we mistreat them and we become alienated from ourselves. This is what it is to rely on someone who is getting through each impossible day moment by moment, year after year.
In Sorrow and Bliss, Patrick is the devoted husband to a woman struggling with mental health issues.
Patrick confesses to Martha that he did enjoy having people see him as the perfect husband for standing by her and supporting her through her mental illness. This adulation helped stem the pain of feeling useless to make her happy or okay or even to calm her down enough for her to stop throwing things at him in a rage.
Martha’s mother has the same unnamed illness. In a scene that felt poignant until it turned saccarine, her mother explains how she had long viewed Martha’s illness as the worst thing that had ever happened to her. To watch her daughter suffer and struggle just as she did.
Now, she declares, she has discovered that it happened for her. To make her a better person.
Mothers of disabled children shoulder the social stigma that persists from discredited theories blaming the “refrigerator mother” for autism and their thoughts and actions during pregnancy for disability.
Nearly all mothers say they would do anything for their children. It’s society that codifies that into a legal responsibility.
Monetizing your hobbies isn't easy. Few blogs and social media accounts make any money. Fewer still provide the kind of stable income that grants security. The investment required is huge and many get nothing from it.
The Caregiver Space has Google Adsense ads on our site. Adsense contributes so little income that looking at the dashboard makes me think I should just remove it entirely.
I use affiliate links when I mention books (which happens a lot) and other products (a rare occurance). I switched to Bookshop maybe a year ago (primarily, since there are many books they don't list) and have yet to earn enough in affiliate income to get a check.
I’m sure someone out there is paying their medical bills this way. If The Caregiver Space was relying on it to pay our bills, we’d be in big trouble. Adrienne is the one putting money in our bank account (and mine) each month.
Why do mothers of disabled children and caregivers more generally grasp the label and turn it into an identity? Because it’s too much to do alone.
There is power in the way an identity pulls and binds us together. In Caliban and the Witch, Silvia Federici provides the forgotten historical context:
“If we also take into account that in medieval society collective relations prevailed over familial ones, and most of the tasks that female serfs performed (washing, spinning, harvesting, and tending to animals in the commons) were done in cooperation with other women, we then realize that the sexual division of labor, far from being a source of isolation, was a source of power and protection for women. It was the basis for an intense female sociality and solidarity that enabled women to stand up to men, despite the fact that the Church preached women’s submission to men, and Canonic Law sanctified the husband’s right to beat his wife.”
Is it disability activism or is it caregiver activism? Is it fighting for someone else’s rights or our own survival?
One is not automatically the other. They can work in concert.
Is it wrong to want to be paid for and recognized for your labor?
It’s our responsibility to form a caregiver identity that is with the people we care for. To reclaim our own humanity by never forgetting theirs.
If you’re interested in learning more about care work PTSD, there’s a great video on trauma in parenting available on Facebook.
If you’re in the UK, CarersUK is conducting their 2021 State of Caring Survey.
If you’re in Canada, The Care Economy is advocating for informal and formal care workers in the coming election. If you’re interested in talking to people to make sure they understand the issues before voting, you can learn more on their website.