Disclosure

The following piece was written during a class by memoirist and athlete, Emily Rapp Black called ‘Reading and Writing Disability’. The prompt for this piece was:
Share about a time when you were glad that you disclosed having a disability.

Thank you to Adriana and Annie for inviting me to be part of Making Visible’s series on Disability Justice & Mindfulness, where I shared this piece as part of the talk I gave.

Standing in the sun, I looked around the circle at my fellow Buddhist chaplains in training. We were a few days into this intensive—a mix of classes, meditation, and Jukai preparation— and finding the rhythm we always did in the schedule of the day. After morning meditation and breakfast, this gathering of chaplains and residents was when the whole community was in one space, just before we moved on to our work assignments. It was the space where announcements were to be made, first by the group lead for the day on behalf of the general community, and then by anyone else who had anything to share. My hand trembled as I raised it to indicate I had something to say.

All morning and the previous evening I had been rehearsing, but still, my throat clenched when the circle leader nodded, inviting me to speak.

“So, uh,” I began, awkwardly, fumbling to reach the rehearsed message in my head. “I have a condition I was born with, a disability that means I live with chronic pain. I promised myself that, on this intensive, I would listen to my body and take care of it, and so I’ve been using a backjack on my cushion for meditation. But people keep cleaning it up. They keep moving it away and every time we go to meditate, I have to find it again. So please, if you see extra cushions or a back jack or someone has a chair set up in a certain way, don’t touch it. Trust that it’s there for a reason.”

My palms are sweaty and it’s not just because of the warmth of the day. I swallow hard and look down, knowing there won’t be a response because there never is when someone makes an announcement. The group lead thanks me and asks if anyone else has something to announce. No one does, and so we break to go about our assigned tasks for the next hour.

The first person to approach me blushes, looking slightly ashamed. “I cleaned up your back jack, it was me,” she says. She was my roommate during the first intensive for this programme. I know her well and I know she is deeply committed to social justice and radical political change.

I smile, reassuringly, “You certainly weren’t the only one to do it, but thank you for the apology.”

She looks sheepish, and I understand. Ableism is insidious. My own journey to notice it is ongoing. I am grateful to have a practice that is about being present, about asking questions, about becoming familiar with the poison of ignorance.

The next person to approach me wants to understand my condition. “What is your disability?” she asks. I have become used to this question. The condition I have is not noticeable at a glance and we are taught that disabilities are obvious or ought to be.

I explain hypermobility, and my very recent realization that the way pain gets talked about in Buddhism doesn’t really account for the chronic sort. That I’m learning not to push stoically through meditating in a particular way, risking migraines, dislocation, and immobility, just because it’s taught at “superior”. I’m learning to accommodate the reality of my body, to listen to it, to honour when my muscles need a rest.

She thanks me. She says she didn’t know and that she will be mindful in the future of the language she uses.

The third person to approach me also wants to know about the condition I have, and we quickly realise we are both zebras born with elongated tendons and a host of unpredictable symptoms, rarely the same in any two people. “I gave it to my daughter. She bruises so easily. Do you bruise?”

“No,” I say, “I don’t get the bruising, but the head rushes and the heart palpitations. I’m scheduled to see a cardiologist soon, after finally getting a medical diagnosis for something I’ve obviously always had.”

She nods, knowing. She is in her sixties but also didn’t get diagnosed until later in life, when doctors gave a reason for the elasticity of her daughter’s skin. We bond as we share tips for meditation, for posture support, as well as dietary things and simple, easily sustained muscle-strengthening exercises that won’t make things worse for us.

We also laugh in that way you need to about the absurdity of internalized ableism. How it teaches us that disability is permanent and fixed, and how, even as Buddhist practitioners, as people with insights into the impermanence of reality when it comes to relationships and jobs and other aspects of health, it’s been a journey to acceptance for this aspect.

Before I made my announcement I had a little voice in my head telling me people would take it the wrong way. I was worried about coming across as blunt, rather than simply asserting my needs for access, a thing that everyone has to some degree. I feared being met by all the worst sides of an ableist culture.

Instead, I was met with an apology, gentle curiosity, and a fellow bendy-spoonie who had also been learning to listen to the particular story their body had to tell.

~~~

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Thank you again to Adriana and Annie for inviting me to be part of Making Visible’s series on Disability Justice & Mindfulness. Making Visible is an online mindfulness community committed to the internal and external work of social justice. Visit their website to support their work and watch other series they have done on topics like Latinx Immigration & Belonging, challenging anti-Blackness, and uplifting the QILT2BAG+ community.