I’m not a fan of people suggesting that something is only a problem because of my negative attitude. Even when it’s true, or at least a contributing factor to the issue, having someone tell me so is not the road to harmony. As someone with basic social skills, I know that telling someone to calm down when a conversation gets a little heated is another way of suggesting we take it outside. I don’t think anyone has ever calmed down when told to calm down or suddenly adjusted their attitude when told they’re upset for no reason.
That said, sometimes an experience can forever shift my mindset. Many years ago I saw a burlesque routine at the Slipper Room that changed my life in a small but significant way. Nasty Canasta did a fan dance routine to the sound of a car alarm [nsfw obviously, depending on where you work]. Before seeing her brilliant perform that night, the sound of a car alarm drove me batty. Ever since, I can listen to the woop woop woop bip bip bip wouoh wouoh wouoh of a car alarm without clenching my jaw. Her work is truly a gift.
Hearing “you can't pour from an empty cup!” is a lot like the sound of a car alarm. It elicits the same sort of visceral response from those of us who have heard it so many times.
I'm not going to perform a fan dance for you (sorry/you're welcome). I will tell you this: When people say you can't pour from an empty cup it's not an order; it's an explanation.
Did you mix up the medications? Of course you did, because you can't pour from an empty cup.
Did you forget about the appointment? Naturally, because you can't pour from an empty cup.
Did you lose your temper? No one can keep their cool forever, because you can't pour from an empty cup.
Do you look like a total mess and smell funky? That’s to be expected, because you can’t pour from an empty cup.
In There Are No Accidents, Jessie Singer points out how almost all “accidents” are actually predictable and preventable. By blaming individuals, we let the institutions creating dangerous situations off the hook. Institutions create the environment where it’s inevitable that a disaster will unfold and then blame whoever happens to be at the wrong place at the wrong time.
For all too many caregivers, you’re right in thinking someone needs so much care that you can’t possibly provide it all and take care of your own basic needs. The answer can’t possibly be that you should somehow become superhuman, do more, be better, never make a mistake even when you’ve gone days without sleeping. This is not a situation anyone should be in. And yet…here we are.
“Self-care is the internal hard work of making tough decisions for yourself and by yourself. It starts with recognizing that you have limits, and you really do have to choose what you prioritize because just like everyone else, you are human. It’s actually not that pleasant of a process, because it means you have to set boundaries.”
Sometimes we are so afraid of disappointing other people that we are willing martyr ourselves rather than risk being honest about our own needs. Sometimes this denial of our needs is the manifestation of internalized ableism, a way to set ourselves as superior to those mere mortals who have limits to their abilities. Sometimes this denial of our limits is a refusal to choose between things that seem too essential to select from among. Sometimes we’ve stayed in emergency mode for so long that we can’t shift out of it; we see no other options. Sometimes we are in one long emergency and there are no other options.
As Lakshmin continues:
“You should also know that it can feel bad to set boundaries. Self-care is valuing your own feelings and thoughts, despite knowing that you may let other people down. It means being able to tolerate other people’s disappointment and trust that it is not a moral failing on your part.”
Caregivers face a particularly brutal version of boundary setting. Accepting our limits is to accept what none of us want to accept. Sometimes self care means accepting that people we love will suffer greatly. Sometimes self care means we cannot protect them from the human condition. Sometimes self care means acknowledging our own powerlessness in the face of an immoral system that is crushing us with externalities. You can’t pour from an empty cup.
Our government, our corporations, our institutions have all set it up to ensure your cup goes dry and there is no opportunity to refill it. Someone decided that long-term care is a luxury good not covered by health insurance. Someone decided to implement hospital at home programs where the family is obligated to provide 24/7 care with little or no training. Someone decided that equipment for safe transfers and the prevention of bedsores are convenience items. Someone decided children with disabilities age out of support services. Someone eliminated home visits by medical professionals. Someone decided to build public transit systems that impossible for many people to navigate. Someone decided the laws promising disabled access would be enforced through individual lawsuits rather than building permits or guaranteed recompense. Someone decided that accessibility online, for events, and in public services would be a special add-on by request rather than the default. All these callous bureaucratic decisions, made for convenience and short-term economic thinking, leave caregivers with no room for error. They are emptying the cups.
It’s not you who’s created this accident. It was never an accident.
Donna Thomson is doing a caregiver recipe exchange. And of course Harriet Hodgson has a cookbook for caregivers.
Disability Day of Mouring is coming up on March 1st. The stories that really gut me are the ones where a family caregiver murders the person they’ve been caring for after they’ve repeatedly reached out for support and faced nothing but dead ends. Just as no one should be forced to choose MAID [medical aid in dying] due to a lack of support, no caregiver should be left so totally alone that murder-suicide seems like the only way out.
Bosnia has tied disability benefits to the minimum wage. Feel free to share that with your elected officials to remind them that we can peg things to inflation and/or the numbers our governments consider a living wage.
Sometimes it’s fun to get angry. Wendell Potter is ready to wind you up with his reporting on the US medical system fleecing us all.
“Although my example is drawn from my life in the U.K., I’m from the U.S. originally and I know that virtually all Americans will experience a version of this story. And plenty of them won’t know their rights, or won’t be able to spare 20 hours on hold, and they’ll take on huge debts as a result. Many people won’t just waste time on hold with private companies but with the government as they try to navigate the maddening labyrinth of benefits programs.
We tend to simply accept such experiences as a feature of modern life. But we shouldn’t. Good governments should make fixing these everyday failures a priority—and they just might help bolster the case for democracy if they do.”