• AJ Hawkins

"I'M DISABLED."

No qualifiers. No euphemisms. And I’m not going to be a “spoonie” anymore.


Let me start with a disclaimer: this is not a critique against Spoon Theory, or those who find it a useful tool for expressing their experience. This is a query about why there has been such a wide scale adoption of the term “spoonie,” some of the ways that might be doing harm, and some ways that I’m changing my and KALMA’s relationship to the term.


Like many chronically ill adults, as a child I was routinely called a hypochondriac - for being achey, for being tired, for asking why my nose was squishy, for asking if it was normal to have my bones pop out all the time, for constantly having sprained wrists and ankles, for complaining that my knees burned when I went up the stairs. The refrains of “Suck it up, Sally.” and “Buck up, Camper.” ring in my mind. And to be fair, I did have a flair for the dramatics, but we now recognize these as early symptoms of my inherited connective tissue disorder. Five years after a diagnosis, I still constantly question myself - as if perhaps it’s not collagen I’m deficient in, but grit.


These doubts are only compounded by my forms of privilege and the narrow perspectives we’re given on disability. The ways that I feel able - my ability to move independently or work, and my ability to adapt to my needs by buying braces or becoming self-employed - are forms of privilege. For a long time, I’ve feared claiming disability because I felt like it wasn’t acknowledging that privilege. I just felt like I didn't qualify somehow.


At the same time, I know cognitively that a person doesn’t have to be completely incapacitated to be disabled. If a seemingly able friend came to me and said, “Oh, I’m dyslexic; I have a learning disability.” I wouldn’t question their identity as a disabled person for a second. But why is it so hard to extend that same acceptance to myself? It’s taken many years - like, up until this morning - for me to realize that the things I can do don’t detract from my disability, and my disability doesn’t detract from the things I can do.


I’ve been doing a lot of exploration and reflection around my identity lately. When we internalize things like racism, misogyny, ableism, transphobia, fatphobia - we don’t just internalize them against others, but against ourselves too. Because I’ve struggled with internalized ableism about myself, I have leaned on euphemisms like “spoonie” - terms that don’t really fit even - in order to navigate around this confrontation with myself. I’ve been party to a process of gentrifying disability and in doing so, I’ve been doing a disservice to myself, to you all, and to KALMA’s ethos of “embracing the diversity and right to respect of all humans.”


I’ve always believed that words have meanings, and using the right words matters. For a lot of people - myself included - “spoonie” isn’t really the right word. Not everyone experiences fatigue, not everyone’s fatigue operates the way spoons do in Spoon Theory. The spoons metaphor was created by Christine Miserandino - a member of the lupus community - to explain a concept called “pacing”, (a method for rationing energy). In the 17 years since Spoon Theory was published, and particularly in the last 5-10 thanks to social media, “Spoon Theory” has transformed from an analogy, to a social identifier, to a massive online community representing millions of people with hundreds of diagnoses and experiences.


With that community has come a sort of “club” mentality - join us, we’ve got jackets and stickers and tattoos and merch! - and I know I participate in this. A sort of in-group/out-group dynamic has been formed, further divided by the emic nature of the term. Most people outside the community, and many people within it, don’t understand that “spoonie” means, essentially, disabled. This lack of understanding means there is no stigma or marginalization that comes from publicly identifying as a spoonie. Many people who identify with the term “spoonie” use it almost like a badge of honor, sometimes making it one of the first identifiers they use for themselves in an introduction. I want to be very clear - there is no reason someone should feel a need to hide their illness, but I wonder: if it’s not about stigma, why is it so hard for so many of us to identify as both spoonie and disabled?


Even as many wear "spoonie" with pride, many people within the community feel ostracized - even offended - by the term. The word I encountered over and over was "infantilizing." For a lot of people, the term feels too “cute” - and as if it diminishes not only the severity of the experience of illness and disability, but also the losses and sacrifices people experience as a result of lack of accommodations for their illness and disability. Disabled people are already disenfranchised, often in multiple ways - is the “spoonie” label adding another barrier to us, and our needs, being taken seriously? In my experience, being ill and disabled is a brutality, and the ways I overcome and accommodate that make me feel like a Badass. It’s why I originally didn’t connect with the spoonie stuff I saw out in the world. It was a lot of pastels and butterflies. I created Spooky Spoonie as a way of reimaging being a spoonie, or expanding the representation of what spoonies were like. My disability has made me give up so much - I didn’t want to have to give up my style, my sense of individuality, or my penchant for the strange and unusual, too.


The more I examine this line of reasoning, the more I feel the imperative to shift my focus from “reimagining being a spoonie” to “destigmatizing disability.” By focusing my effort on empathy for the marginalization of the community, not on dismantling the oppressive system, I was failing to be the positive disruptive force in this world that I want to be; I was perpetuating the status quo. In an effort to do better, there are going to be a few changes around here. The first and biggest is that my category of content and products that has been called “Spooky Spoonie” will now be called “Disabled Darklings”.



This new name is meant to honor the validity and celebrate the diversity of disabled identities. The term “Darkling” is an old fashioned term for a spooky being, but it also means “being or occurring in the dark; obscured”; I think this secondary definition represents the very real social erasure and invisibility of many disabled and ill people. I’m incorporating a darkling beetle as a logo for this content, to replace the previous spoon design. The darkling beetle felt like an appropriate choice, not only for its name and favored diet of decaying matter and mushrooms, but for its adaptations that allow it to survive in the most inhospitable environments.


My spoonies, don’t fear! Within the Disabled Darklings category, there will still be spoonie themed products available. Over the next few months, there is going to be some pruning, phasing out, and updating of existing designs; as well as the introduction of new designs incorporating the word “disability” and imagery that is more expansive. Even with all these changes, I honor the terms you choose to identify with and any reasons you choose to identify with them. I do ask, though, that you examine your relationship to the term “spoonie” and your relationship to identifying as “disabled;” feel out the places where you find friction. You may find that “spoonie” is still a good fit for you; you may begin to identify as both; you may choose to leave “spoonie” behind. Any choice is valid.


As for me, I’m disabled.