See the Cripple Dance: Finding agency and autonomy through isolation and grief

Do you know about crip-time? Do you know about crip-grief? Do you ever consider what it means to befriend loneliness?

In the Eight of Cups, we see a figure holding onto their cane and walking away. A non-disabled reader might think of spiritual ascension, a retreat in nature, ‘raising your vibration’ (haha, ew). I see barriers, inaccessibility, and loneliness. It doesn’t look like a hike into the wilderness. It looks like being misunderstood, alone, unseen. It looks like leaving.

When I talk about crip-time, I mean: Slowness. Moving slowly, responding to emails and letters slowly, and walking slowly. Reading entire books in waiting rooms, spending time in multiple waiting rooms a day, and hanging out with sick friends once or twice a year. Getting all dressed up with nowhere to go, showering once a week, and taking meds to wash my hair. Giving my friends permission for all the same.

When I talk about crip-grief, I mean: Missing out. Saying no to invitations, no longer being invited at all, being abandoned and forgotten. No longer being able to hop on a bus and go somewhere else, forgetting what it’s like to walk a few blocks without thinking about it, crying in public, crying with pain, crying with daydreams. Becoming somebody else. Knowing that I’m not the only one.

Crip-time and crip-grief both involve isolation.

When Pamela Colman Smith, aka Pixie, designed this card, she may not have been thinking about disabled and chronically ill queers and trans folks, but we have unexpectedly shown up and found ourselves in her cards (then again, I like to imagine she knew we’d be here after all).

I’m writing this column at the library, after spending the morning at yet another specialized clinic for chronic pain. It’s the end of Winter, which means I haven’t been inside a library for four months because I was housebound. I was on the waitlist for this particular exam for nearly a year. I don’t use public transit anymore because it’s become inaccessible to me.

Instead, I use a service called WheelTrans, which is public transit for disabled folks that costs the same as the regular fare. Sometimes it’s a bus that picks me up, but usually it’s an accessible van or car since the city has contracted cab drivers to get us around. It’s a dream compared to regular transit, but has its issues too. Like, sometimes rides are late. Very late. Sometimes there are multiple pick-ups and drop-offs, so even if you’re moving between the same destinations again and again, it’s impossible to predict if the ride will be fifteen minutes or an hour or what. Sometimes you’re on a waitlist for a medical exam for a year, and you miss your appointment because WheelTrans was late.

This is another case of crip-time. When I booked my ride to get to my appointment (you can’t just be spontaneous and go somewhere, you’ve gotta book online or by phone a few days in advance), I was given the option to choose a ride that would get me to the hospital ten minutes late, or one that would get me there two hours and fifteen minutes early. So I woke up at six in the morning and got there even before the receptionists.

That gave me time to make art.

One of the ways I’ve found to cope with chronic pain and illnesses is to pretend each appointment is an Artist’s Date. You know, like Julia Cameron? It took me a few years of tinkering, but I’ve finally found the perfect combination of meds that makes these appointments not only tolerable but maybe even kinda fun, too (sometimes). I used to arrive sad, angry, barely able to stay present or upright; I hunched into a corner, tense and frightened, crumpled, and I was pre-emptively mean to doctors because they have so often been mean to me.

A few years ago, if I had a moment alone, I began taking pictures. Of myself, of paperwork, of the instruments around me. It became easier to breathe this way, and slowly, like a bad cliché of a flower in bloom, something about me unfurled, and I began to feel more like a person and less like a patient. And during that process, I found the work of people like Audrey Wollen, who created Sad Girl Theory, and Karolyn Gehrig, who created #HospitalGlam.

Audrey said, “I’m trying to open up the idea that protest doesn’t have to be external to the body; it doesn’t have to be a huge march in the streets, noise, violence, or rupture. There’s a long history of girls who have used their own anguish, their own suffering, as tools for resistance and political agency. Girls’ sadness isn’t quiet, weak, shameful, or dumb: It is active, autonomous, and articulate. It”s a way of fighting back.”

Karolyn said, “If you can photograph yourself in a space and exist in it, that space is yours. When you can take a selfie, you can remain yourself in those environments. You don’t have to perform illness.”

I understand what they mean. Documenting my medical appointments, making art of them, is one way I’ve found to become more myself, to be someone beyond a body-shaped object in a white room. It’s how I remain autonomous and creative while seeking care in a too-often invalidating and incompetent environment that denies my personal agency, let alone my political agency. (Interestingly, one description of the reversed meaning of the figure’s back turning from the viewer suggests grumbling about one’s disabilities – a reminder to consider internalized ableism, too.)

Ten years ago, the first time I was admitted to a psych ward, staff forgot to confiscate my digital camera. It had only a few settings: black-and-white, sepia, colour. Close-up, landscape. I snuck a series of black-and-white photos. My face. A glimpse through a narrow window looking into a single-lane bowling alley, just like Girl, Interrupted (yes, I got to play). And I feel grief when I remember those photos because I don’t currently have access to them

That urge to document pain has always been with me.

After my appointment, I had a conversation with a friend about the impossibility of being able to fully comprehend another individual’s internal worlds. With all the books, all the cards, and all the conversations in the world, our imaginations still remain limited. We can only know so much before we draw (another) blank.

She likened this blank space to meeting on a staircase – and laughed, of course, at the idea of two disabled queers choosing to meet on a staircase. But sometimes it’s not a choice. And it’s not a literal staircase, but a staircase as a metaphor for the space in-between, for the unknown worlds.

Taken literally or metaphorically, the staircase in the Eight of Cups need not mean anything like transcendence or acceptance or divinity. It can mean fighting. It can mean falling. It can mean missing out. It can be a symbol f/or a reality of what we are not given access to. It can mean that some experiences, some thoughts, some feelings, cannot be shared or grasped by others, but that we can find ourselves whole within them anyway.

The Eight of Cups is the slow and unpredictable WheelTrans ride, my body in a quiet examination room, my cane as my friend, a feeling of making myself at home wherever I need to be.

There are things we know that non-disabled people can’t know. We know what it’s like to contort ourselves in an attempt to fit within inaccessible spaces, to have only the most convenient or cute parts of us seen while the messiness is ignored or overlooked, and to stay home and wonder if we exist. We know the joys of sick crazy crip connections and the resentments of the trade-offs we make to access connections. We know what it’s like to spend more time with doctors and nurses than our friends.

Scarcity of love, affection, intimacy, and tangible support for disabled folks is real. But there are pathways we create on our own. And tracks, alleys, secret corridors, and orbits, too. Some of our cups do remain upright, even if they appear empty.

I no longer name feelings of not-belonging as personal failures.

My losses, strengths, daydreams, skills, and fears happen within larger contexts of capitalism and ableism, etc. Although loneliness and abandonment can and do feel personal, the Eight of Cups is my reminder that they are also political. Disability is political, and in/accessibility is political.

When this card comes up, try asking yourself questions like:

What do I love about being disabled, sick, and crazy? How can I love and value myself and my pals as we struggle to survive impossible circumstances? How can I mourn what I’ve never had, or no longer have access to? How can my friends and I support one another when we cannot be physically present? Can I find pleasure in loneliness, not just aloneness and solitude? What insights have come to me through my experiences with mental illnesses, chronic illnesses, and trauma recovery that I could not have discovered otherwise?

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4 comments

  1. Julie Reeser says:

    This meant a lot to me, thank you. I have found peace with my loneliness, but I struggle with any public display of my needs. I often suffer and hurt myself more by trying to fit in or not be a bother. It’s a huge issue for me, and I know it, but have yet to find a way to step up to it.

  2. anemonerosie says:

    Limping around the TTC today I’ve been feeling a lot of this, too. I don’t like needing to take the subway two-three stops (it shouldn’t cost $1/stop!) but sometimes it hurts too much, and I just need to be *home*.

  3. H. Klaus says:

    8 of cups has definetely meant physically leaving for me. I struggle a lot with mental illness and something bad happened in my home a while back. The 8 of cups kept showing up and I didn’t fully understand where I was supposed to go or what to do. I isolated myself a lot, was sad a lot… and then I realized it was time to move house because I could never be happy living there (and it was super impractical too, my shower froze in the winter because there wasn’t proper insulation by the door!) It was a struggle since I hate moving, it was something I had to do alone and stress a lot about, but after I moved house I’ve not seen much of the 8 of cups anymore. This gave me a bit to think about in addition to my very literal “it’s time you leave”-experience with this card!

  4. Blanche says:

    Thank you, this is really valuable. I didn’t know about the terms crip-time and crip-grief – so relevant to my crip-life. Thank you.

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