Notes from the middle of everything
Part 1 of 8
Now that I’ve moved into the maintenance stage of having had breast cancer, I’m finally feeling like I can put my attention and focus back into dating seriously. Unfortunately, there are very few readily available role models for dating while disabled. That’s why I was intrigued to break open Datable by Jessica Slice and Caroline Cupp.
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I recently finished the 2013 book Good Kings Bad Kings by Susan Nussbaum. Overall, it was a good read. The linguistics she uses with some of her characters left me a little uncomfortable, as Nussbaum is a white author writing as BIPOC characters. I hope that, at the very least, she consulted BIPOC readers and had them test-read the novel before publication.
Also, fair warning, there’s a fairly graphic scene where one of the kids is sexually assaulted by a staff member. Just something to be aware of if you decide to pick up the book. It’s most explicit on pages 64-67 in the paperback copy and 47-49 in the e-book.
All that said, one of my course assignments was to choose a character in the book and provide a character map focusing on a specific trait. We were then to connect to a book theme, which I decided to choose was disability culture/community. It was an interesting exercise and I thought I’d share my thoughts with you all as well.
Btw, I chose Joanne because I see so much of myself in her, both in how she became disabled and in her crip attitude and wry sense of humor. Honestly, I could hear her words coming out of my mouth. So, here goes:
Character Map: Joanne is Observant
One of Joanne’s defining traits is that she is deeply observant, not just of people but also of the subtle cultural and political dynamics surrounding disability. She notices things that other staff either ignore or normalize, and she identifies the underlying patterns of ableism shaping everyday life at ILLC. Early in the novel, Joanne observes how the institution uses euphemistic language to disguise harm: “Naming these places is all about misdirection” (p. 10). She even points out how “The kids here are called patients” (p. 11), or in Mrs. Phoebe’s case, “her angels” (p. 11). Joanne recognizes that the language of “care” functions as a mask, allowing the institution to appear benevolent while maintaining control over disabled youth. Her attention to language reflects how sharply she perceives the dissonance between what these systems claim to be and the lived reality inside them.
Joanne’s observations often extend to cultural knowledge that only emerges through shared disability experience. For example, she notes, “It’s well known in crip circles that the best place for a crip to get a job is a place that’s swarming with other crips” (p. 9). This is more than a practical comment. It shows her awareness of disabled community patterns, norms, and insider truths. She sees disability culture not as an abstraction but as something shaped through everyday survival and solidarity. Joanne’s observational skills are rooted in her lived experience as a disabled adult who understands the unspoken rules governing the world she navigates.
Theme: Disability Culture/Community; Joanne & Reclaiming “Crip”
A powerful moment of disability cultural expression comes when Joanne explicitly discusses her own language use: “I myself prefer ‘crip,’ or variations on ‘crip,’ strictly for personal use… Why not take back the king of all pejoratives, ‘cripple,’ and re-empower it by giving it the crip imprimatur?” (p. 106). This quote is a textbook example of disability culture asserting itself against the dominant norms that stigmatize disability. Joanne situates herself within a community conversation: some disabled people prefer not to use “crip,” others actively reclaim it. She then frames her own choice as an act of empowerment rather than as a source of shame.
What makes this passage especially meaningful is that Joanne articulates a distinctly crip-cultural logic: reclaim the slur, redefine it through community usage, and resist the stigma imposed by nondisabled society. Her language choices reflect an identity grounded in pride, solidarity, and political consciousness. In claiming “crip” for herself, Joanne marks herself as part of a cultural lineage within disability activism. This moment reinforces how disability culture is built through shared language, humor, resistance, and the refusal to let outsiders define what disability means.
I’ve never settled for the pink-washing of my experience. Even with the best of possible outcomes, my cancer story has been gruesome, painful, and arduous. It’s also been full of unexpected beauty and eroticism. The idea of being a “survivor”, while helpful to many who need the narrative to get through the ordeal, feels problematic for me personally.
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It sneaks up on me… just a twinge, slight pressure rumbling just beneath the surface. Realization hits me on a subconscious level, not quite aware of what some part of me already knows is on the way.
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This commentary is a reflection on poems Folsom Follies and Scartography, both of which now have original art that I’ve created attached.
Brueggemann (2013)1 asserts that when disability is claimed as a “positive identity marker,” it enables the creation of art that celebrates human variation (p. 286). Claiming crip as an identity has allowed me to create from pride and embodiment rather than repair or recovery. My poems, Folsom Follies and Scartography, are acts of crip life-writing that explore sexuality, pain, and the body as sites of resistance and beauty. Together, they reclaim narrative control from systems that label and contain disabled lives.
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I’ve often struggled with meditation because it triggers my post-traumatic stress disorder (PTSD). If I close my eyes, I tend to go into flashbacks. Opening my eyes doesn’t seem to be much better because I become too distracted by everything around me. I don’t like guided meditations. My physical impairments make it nearly impossible to do movement meditation (such as walking or doing the dishes).
If you recognize yourself in any of these experiences, you are not alone. It is quite common for individuals with PTSD to struggle with meditation practices. I’d like to share with you some alternative mindfulness practices that may be more accessible to you. However, before I jump into that, I’d like to put in a plug for David Treleaven’s book Trauma-Sensitive Mindfulness. It helped me put my experience into a broader context and understand that nothing was wrong with me and that there were still options available to me.
Now, let’s jump into some PTSD-mindful mindfulness practices!
PTSD-mindful mindfulness is centered around accessibility, self-compassion, and gentleness. You don’t have to look like a Buddhist monk, sitting on a cushion with your eyes closed and your legs crossed, falling into a deep state of nirvana.
That’s not to say that these practices can’t get you closer to enlightenment. I would argue quite the opposite. PTSD is a serious psychological condition that does its best to force us back into past trauma. I believe that these exercises can serve to bring you back into the present, and that’s where nirvana exists.
Every January, people flood the internet with promises to “be better.” But if “better” still means faster, thinner, stronger, more productive, that’s just ableism in a sparkly party hat. This year, instead of fixing yourself, try unlearning the stories that say you were ever broken.
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Part 4 of 4
Using creativity to explore my trauma and rage has allowed me to integrate it on a pre-verbal level. It touches a part of my soul and psyche that talk therapy and writing prose cannot reach. I’ve been able to process overwhelming internal states by externalizing them in my art, and in turn sharing that art with others.
I have translated the chaos that exists inside me, the confused and desperate parts of myself, into coherent shapes and expressions. I’ve reclaimed voice, even if it’s not in the traditional sense of speaking it aloud in linear narrative form.
The rage gripping my bodymind releases its grip a little more each time I allow some of it to seep out. My muscles relax, and my lungs can take in more air. When rage becomes art, it is the fire making room for new growth.
Rage is sacred, generative, and transformative. I choose to claim it as a force that builds, not breaks. It is my creative companion and muse, not my destruction. It transforms me, just as the goo in the cocoon coalesces into another beautiful form.
Part 3 of 4
Content note: incest, sexual assault, physical abuse, self-harm
To be clear, my rage refuses to be pretty. It will not be sanitized into a palatable, socially acceptable form of anger—that is not too loud, not too explicit, not too real. There is a pressure to be “reasonable”, especially for women who are often not afforded the same leeway to express their rage. I claim my right to express my rage in its rawness and unrefined truth.
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Part 2 of 4
Accepting the rage within me is also about learning to set boundaries. The emotion of anger is a signal that something is wrong, a violation has occurred, and it gives us the energy to do something about it. It is our body’s wisdom communicating our need for healthy separation from that (and whom) which is causing harm.
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