Spoonies, Internalized Ableism, Work Ethics

A quick August 2022 note.

First off, “Work” here includes all occupations such as standard employment, student, homemaker, caretaker, child raiser, sex worker, running your own business, etc. It applies a bit more to situations where there’s pressures to perform to a certain level or you may lose the occupation.

This was inspired by a conversation in the autistic community on Twitter, but applies to all folks with disabilities, chronic health issues, mental health issues, and neurodivergence — all the folk under the “spoonie” umbrella.

Sometimes we think we “should” be doing more, and we push ourselves too hard which can cause more symptoms or illness. Neurodivergent folk, especially with autism, may be most susceptible to this (as we’re “rules followers” generally speaking). So we may take the idea of trading our time & efforts on the job for money very literally and push to get work done above and beyond expectations. Don’t expect your workplace to suggest you meter your efforts or take breaks other than those required by law; most workplaces will exploit employees for everything and just replace them with a new employee when they break.

And what is that break? Burnout. Meltdowns. Loss of ability to self-care outside of working hours is a trap that doesn’t end well for the employee.

A wise person said “If you don’t take care of your body, your body & illness will make you take care of your body.” The same goes for other factors of our health. If we’re not doing proper self-care, and replenishing our energy, our energy system in our body will burn out.

Our work ethics & internalized ableism often cause us to do much more work than neurotypical folk (one person in the conversation had cited it took at least 2 hires to replace them when they left a workplace, and that was their wake-up moment). Internalized ableism is when we have adopted the expectations — or the perceived expectations — of those around us and we pressure ourselves to meet these unreasonable expectations. Sometimes these expectations are “what abled people can do” and sometimes they’re fictional (“what a superhero can do”). We can tell if our expectations are based around internalized ableism when living up to them sacrifices our health or safety, or if meeting those expectations will cause an increase of symptoms such as a flare or autistic burnout.

Many of us may have multiple disabilities as well — PTSD or C-PTSD, chronic pain or illness, several mental or physical diagnoses, and so on. This can add additional layers of complications where symptoms or self-care difficulties collide with each other. It’s like the catch-22 of needing to eat less processed foods to stabilize one’s health markers, but not having the spoons to prepare meals from scratch or the money to purchase less processed ready-to-eat meals.

This all adds up to the good possibility that those of us who work may be blowing all our spoons at work because we’re ethically driven to “give our all” at work and then we come home, collapse, can’t do any self-care, etc.

Another issue may be that those of us interested in working “can’t” work because we think an unreasonable or unattainable level of effort has to go into working, and we don’t have it in us or know we need our self-care to be functional at all.

So it’s important to note that able, neurotypical folk don’t give 100% of their spoons at work. They mess around, chat at the cooler, take breaks, get up, walk around, doze off, etc. and get away with it. Then have enough spoons to go home, make dinner, deal with herding kids into homework or whatever before zombie in front of TV and going to sleep.

But spoonies feel “less than” so we have a problem where we sometimes push ourselves as much as twice as hard at work, afraid of being called out about being lazy or slacking or not doing enough.

A rule of thumb to consider is to allocate 1/3-1/2 your daily spoons to work. This includes if/when you use the stuff you learn about bringing Better Spoons to your work through this course. Apply what you learn in this course to your self care tasks as well as to your occupation. In other words, as work generally occupies say 8 hours a day or so, you may want to aim to still have the energy to get ready for work, travel if needed, decompress from work, and perform self-care tasks including meal preparation, exercise, relaxation, housekeeping, and some zombie tasks (mindless things that don’t require thinking) to allow mode changing and prepare for restful sleep.

None of us will prove anything by throwing everything we have into work until we have nothing left for anyone or anything else including ourselves. Workplaces (including schools & colleges) are in the business of squeezing productivity out of people, and when someone doesn’t meet their bar of productivity they may hire (or promote, or give a scholarship to…) someone else. And if you burn out and leave a workplace, you may be even more sick and disabled when you leave.

If this describes you, please check out our Let’s Talk About Shame presentation from the 2022 Plural Positivity World Conference (optional, 44:51 mins). We mention procrastination & perfectionism, shame around making mistakes, and fears of being rejected from the groups we belong to. Burnout is addressed head-on in this course, but we wanted to also make sure to mention and help folk circumvent this shame/internalized ableism component that many of us experience.

There’s so so many caveats to add to this in terms of disabilities and chronic illness. Such as getting time off for doctor visits. Having to spend our vacation time for surgeries. All the “disability tax” items like mobility aids, van conversions, medications or treatments that may not be covered by our health plans. The additional stressors with the pandemic, and folk being forced back into offices even when being in an office is unnecessary for the job to be done well. There’s many many caveats, and we can’t cover all of them.

Y’all are still valuable employees regardless and you don’t need to “make up for” being disabled by being extra anything for the job’s sake. You’re valuable, enough, worthy of having a job, and you deserve all the accommodations you’re entitled to, and you should not be expected to do inhuman amounts of work and sacrifice your health out of guilt for working.

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United Front: Developing Better Spoons Course

Spoonies, Internalized Ableism, Work Ethics

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