A few years ago, back when I still asked questions on our public Facebook page, I asked if people had chosen to become caregivers.
I was taken aback by how many family caregivers said things like “no, I talked with my siblings and we decided I would do it.” Clearly, there had been a discussion of the various options and they’d decided to take on the role of caregiver, but they still felt they had no choice.
I was especially surprised by how many home health aides, nursing home staff members, PSWs, etc. said they hadn’t chosen to become professional caregivers. They had been pushed into the job and had found various ways to make peace with the role they were forced into.
This is probably not a surprise to you. A number of books and articles explain this in detail, my favorite of which is Evelyn Nakano Glenn’s Forced to Care.
There’s a lot of messaging in the caregiving advocacy world that “caregiving is the hardest job I’ve ever loved” and how it’s not labor so much as it’s a calling.
This religious phrasing is no accident. When one is called by God they are appointed to dedicate their lives to others. There is no resisting the role that’s been chosen for them.
So many people become caregivers not by their own choosing but because they have been chosen. They’re conscripted.
Saying “no” is simply not an option when refusing to do care work is framed as being morally repugnant.
To say no is to shirk your duties, abandon your family, be a monster.
We’re told that we just need to set healthy boundaries and take care of ourselves, but when we do this we go from saint to sinner.
Sure, we hear over and over again how “self care isn’t selfish.”
This vague bromide is far less impactful than the medical staff who simply assume care work is our top priority and assign us task after task. It’s up to us to figure out how to do that work as well as whatever other responsibilities we have.
Someone needs to do these things. It’s clear that someone is us.
When I stumbled onto Margeaux Feldman’s Instagram account, I was struck by the way Margeaux acknowledges the complexity of care — how care can be a source of immense pleasure and it can also be a source of deep trauma.
From the age of 11, Margeaux gradually assumed more responsibilities for her father’s care. The care didn’t feel voluntary or mutual. They weren’t allowed to say no to the duties they were assigned. It felt like they weren’t supposed to have their own needs.
Taking care of their father was something done quietly, without acknowledgement, until his care needs grew so they couldn’t remain a secret. Margeaux went from being seen as a rebellious kid with tattoos and dyed hair to being lauded for being an angel.
They were taken from one box and put into another, with no one paying enough attention to see them for who they were.
As a caregiver, people often comment on how strong we are. Margeaux points out how any of us will be strong when we have to be. Or at least you’re strong until you fall apart.
No one said to them: “Wow, this must be hard for you. You shouldn't need to be this strong.”
Research on young caregivers is scarce and starts with the age of 14. There’s this whole group of kids being forced to care that no one is looking at.
It was after Margeaux’s father died that they discovered the term “caregiver.”
It was only as a young adult that they discovered a community of people who truly supported each other. A community based on values — a group of radical queers dreaming up a world of transformative justice — rather than a community based on proximity.
That’s where Margeaux experienced what it was like to have reciprocal, consensual care.
Giving care can be traumatic. Giving care can be healing. We shouldn’t have to go through the work of healing on our own.
Care work is so much more than the comforting hand holding at a hospital bedside. It’s more than providing encouragement, doling out medications, and putting fresh linens on the bed.
It’s going from having age appropriate chores to being responsible for all the cooking and cleaning. It’s going from babysitting your little brother to being responsible for him. It’s not saying anything when you’re yelled at because people in pain aren’t responsible for their behavior. It’s not having time to do your homework and no one paying enough attention to notice something is wrong, no matter how obvious it must have been. It’s not having the power to say no and still have a place to live.
A community is a web of interdependence. Where people can say what they need. Where care is given and accepted voluntarily. Where boundaries are encouraged and respected.
When there’s no shame for having needs, care can be acknowledged and valued. It becomes normal to say “thank you for holding space for me”, “thank you for the food you cooked for us”, “thank you for being in my life.”
Margeaux has found that giving care feeds their soul. When its consensual.
Most of the things I’ve read about care work from a disability justice framework focuses on receiving care that is not consensual. That doesn’t feel safe. That isn’t respectful.
So often both sides of care are non-consensual. The giver is conscripted and driven to give until they break down and the recipient is stripped of power.
We turn to the language of being “called” to make compulsory labor more palatable. We play games with language and reality to soften the dynamics and attempt to restore dignity for both parties.
Why are we poisoning our relationships with this dynamic?
There are other ways to provide care besides conscription. It’s not some mysterious problem with no solution. There are other ways to do this. People are living it.
There is not one perfect way, but there are endless imperfect ways and we can figure out as we go along.
We have everything we need to form a community of care.
It’s hard to build a community on Instagram, so Margeaux created the Soft Magic community. It’s a more intimate space for people to support each other. Members share the costs of keeping it running with a payment structure designed to be accessible to all.
Speaking of Instagram, @gendersauce made a boundary setting workbook for caregivers in situations where you aren’t obligated to do what you’re being compelled to do. When you’ve been forced to care in the past, it’s hard to recognize when you are able to establish healthy boundaries and figure out how doing that actually works.
So, did you take on the role of caregiving through choice? Or were you pushed into it?
Are you able to set boundaries? Or does that result in being punished or vilified?
How can we create a world where care work is consensual?
I would not consider myself being 'conscripted' as I decided to adopt 4 Special Needs children, all of whom are now in their 30's. I knew that caring for them would be a life-long care-giving role. Two of these children now live elsewhere as I could not provide the level of care they needed. The two who remain with me are not too difficult, at least on the physical aspect of care. The level of emotional and intellectual care is huge. I think for Three. I do for Three. I still have to brush the teeth for one of the two. I still have to bathe them though one does try to help. Covid-19 has messed up our lives. My sons no longer have Workshop so they are home, with me...24/7. I have no breaks so that is not easy. One of the two is displaying behaviors I had not seen at this level ever. He is angry and cannot understand why nothing is the same. Even still, I try to take them places. It helps a little. I am now also dealing with the recent Covid-19 Positive diagnosis of one of my two daughters. She is also quite Medically Fragile. I can only hope she will not develop symptoms and will get better soon. Despite all this, I just carry on and figure my way along whatever pops up in my life. I stay hopeful that things will eventually get back to normal, even if it is a partial normalcy.