I speak and write a lot on sexuality and disability. From classes on Negotiating BDSM in Disability Context to working on multiple writing project, the topic of sex and disability is a pretty big part of my life. And one part of how I talk about/with/in regards to living with disabilities is the Spoon Theory, originally created and written by Christine Miserandio, a woman with lupus. However, I find that the concept of spoon theory applies to most people with disabilities, and actually, to life in general. She talks about how “healthy” people (in her case, those without lupus) have an endless supply of spoons…but I beg to differ. I think spoon theory works very well in regard to polyamory/non-monogamy, in that you have a set supply of spoons, and have to figure out how many spoons each relationship gets. It also works well in general, when you’re trying to explain to people that they may want to be the best employee, the best parent, the best partner, the best sibling, the best soccer coach, etc, but they only have so many spoons in a day/week to divide between all of these things.
Basically, taking the concept that we all have limited resources, and have to decide how to best use them in our life, can be related to anything. In regards to disability, it is truly a great way to get friends and partners of people with disabilities to understand some of the difficulties that PWD may go through in life.
When I teach at a Kink conference, I often have to choose between attending all the workshops and skipping the play parties, or attending a few workshops, napping and then hitting a play party or two, because I just don’t have the spoons (or physical/emotional resources) to do it all. Often, people don’t get it, and view me as snobby or lazy because I don’t “make the most” of the kink conference, but I know that if I don’t practice this self care, I’ll spend the next day or two doped up on percocet and unable to do anything. Putting it within the spoon context often helps people to “get” what I’m talking about.
Here is the beginning of the spoon theory story:
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.