"'Spoon Theory' was intended for the chronically ill and its appropriation erases the concerns of a marginalised group," writes Naomi Chainey. Photo: Stocksy
To casual observers, the schedules of chronically ill people appear erratic. We are active today, housebound tomorrow, and the next day is anyone's guess. We require flexibility from others, but rarely provide it in return. As many of us present a deceptive picture of health, resentment can build over the inconvenience of our behaviour. Accusations of being lazy, inconsistent or bludgers follow us everywhere, and can be more demoralising than the symptoms which limit our activity in the first place.
One of the more effective ways we've found to gain support for our baffling time management strategies is Christine Miserandino's 'Spoon Theory'.
How do spoons relate to chronic illness? Technically, they don't. But Miserandino was in a diner when asked to share her experience of Lupus with a friend, and she used spoons as a visual aid. She explained that healthy people have unlimited "spoons" (potential activities) and freedom to use them at will. A "spoonie" (chronically ill person) has limited spoons, and must manage carefully.
On a particularly bad day, I might have five spoons. I get up, pour cereal, eat, pee, and feed my cat. That's it. No TV, no Facebook, no shower, no getting dressed, no washing dishes. Spoons are for essentials. The remainder of the day is for bedrest. Any more activity will result in less spoons tomorrow.
Most days I have more spoons than that. I'm active as spoonies go. Still, I'm constantly calculating: doctor's appointment or groceries, shave legs or do laundry, sex tonight or paid work next week? When life presents unexpected tasks that can't wait, my spoons get rearranged. My daily quota doesn't always match my plans.
Spoon Theory gave us a fantastic shorthand for communicating this reality to friends, employers and family. Awareness and understanding of why we chose to avoid the work and play expected of us became more achievable.
But then something unfortunate began to occur. The wider disability community cottoned on and started using spoons to describe any unusual fatigue. People struggling with particular tasks (rather than all tasks) began to say they'd run out of "social spoons" or "walking spoons". One friend claimed she'd found the key to increasing spoons (sex!). Healthy disabled people used it to describe entirely normal fatigue. Able-bodied activists got hip to the lingo and suddenly lacked the spoons to deal with mansplainers and racists. And on it went.
Let's be clear. This is appropriation. As tiring as your mansplainer is (and I feel you), I doubt he ever reduced anyone's world to eating, peeing and cat-feeding. As energising as sex (endorphins) can be, spoonies feel our "can do tomorrow" lists shrinking as we orgasm, and don't need well-meaning folks suggesting sex as a solution to our ills.
Spoon Theory was intended for the chronically ill. There's a fair argument that it applies to mental illness and people on the spectrum. It's hardly a universal disability experience though, and the appropriation effectively erases the concerns of a marginalised group.
We don't discuss it much (it's a faux pas), but in disability politics there are divides. Invisible and visible. Congenital and acquired. Mental and physical. Healthy and ill. Politics tend to differ depending on the combination experienced by the individual. We face different discrimination and have different needs. As with all social justice movements, some voices are privileged over others in the shared dialogue.
Most (not all, but most) spoonies fall into the invisible illness category. Jill C. Humphries summarises our predicament in her paper, Disabled People And The Politics Of Difference:
"The propensity to treat only tangible impairments as evidence of a bona-fide disability identity clearly marginalises those with non-apparent impairments... refusal to [identify difference] bolsters up the the claim by people with apparent impairments that they represent all disabled people."
When I raise invisible illness concerns in disability forums, the response is mixed. Despite the adoption of our terms, actual discussion of our needs and frustrations are labelled divisive. We are encouraged, sometimes aggressively, to pipe down.
One example is a loaded public post I was recently tagged in by an "ally" after suggesting disability activism become more inclusive:
It's the equivalent of asking someone with an intellectual disability if they can spare some IQ points. Incredibly rude, unacceptable, and a sign that better inclusion really is in order.
Ultimately, what all this appropriation and erasure sets out to achieve is a one-size-fits-all disability activism. The presentation of a united front in the face of society's ableism. It's understandable, but we have an incredible diversity of experience within our ranks that must be respected and embraced if we are not to leave the most vulnerable behind.
Perhaps this makes solidarity a challenge, but we may end up stronger for rising to it.