Disability brings keen ability to frontline activism

The conversation started in late January, at a kitchen table with two friends in the disability community. We looked at each other and asked: Why are there so many of us at the front line?

It’s empathy, right? “I think we know what it’s like to be treated differently, and then we see other people’s pain,” P said. She has struggled with a combination of post-concussion syndrome aggravated by long-COVID. She can be in the middle of an almost-average day and suddenly be struck by debilitating disequilibrium, nausea, and light-sensitivity. “When you’ve suffered, you see other people’s suffering, and you have empathy for that.”

P shared about another friend who has fibromyalgia and is on the autism spectrum: “She’s driving around doing rapid response because she just can’t sit back and watch this happen to people.” P noted that every member of her book club is also involved in mutual aid. Each one either has a disability or has survived a profound life-threatening difficulty at some point.
Enhanced empathy is definitely part of the equation. But there seemed to be something more. Sit a while longer with two friends. Stare at each other. A deeper reason materializes.

K mentioned it first: “I think those of us who’ve overcome aspects of disability, have a resolve as well, that maybe others don’t.” She paused. Like me, K has a disorder that affects her mobility and the stability of her joints. They can dislocate with no provocation. All three of us pondered moments of brute resolve. “We know that we can get to the other side of this, where others might see only the insurmountable. Our bodies remember that and know how to do that,” K said. Other people who are new to disability, or new to serious suffering, don’t have that embodied experience.

“So, it’s a good skillset match?” I asked.

P’s eyes lit up. “I don’t take no for an answer,” she said.

K heartily agreed. “I do what’s important to me. I’ll tough out the ‘leg thing’,” she said, referring to the latest limb giving her exceptional trouble. “I’ll figure out what I can do, and I’ll monitor and adjust. But it’s not going to stop me… I’ve learned how to ‘figure it out’, while continuing to do all the things that are important to me.”

We know how to live life in the midst of pain, how to do joy in the midst. And how to balance “choosing joy” with knowing when the pain is so bad, you’ve got to hole up in a dark room with an ice pack and a stocky out-for-the-count med.

Life-after as life in the midst
That January conversation stuck with me these past months. There certainly seem to be parallels between “life with a chronic condition” and “life under occupation”.

What if we viewed autocratic regimes as chronic conditions: a subset of disability, specifically a degenerative, painful disease process. This body that is the U.S – or all of Anglo-Western culture for that matter – has a chronic condition. Those of us who live life in bodies with chronic conditions, know what it means to do “life in the midst”. Ever-present uncertainty management.

Remember this winter? That day you thought you were going grocery shopping. Instead, you stopped one block from the grocery store with a whistle and cell phone. It was like your nation had turned autoimmune: irreparably broken cells attacking good healthy cells. You were the little immunomodulator trying to bring some sanity to the situation. Or at least witness it and provide information to all the other immunomodulators.

But damn. You also wanted to pick up some Lunchables for the kids because they love that shit. And a pineapple. Just one luxurious splurge during that stressful time. But no. No groceries. Whistleblowing instead. Welcome to life with a chronic condition.

Perhaps disabled bodies moved into that space with a little more ease, from one pool of frigid water to another. We didn’t have to adjust to “life in the midst” because we knew how to do that.

I hear the assertion so often: People with disabilities and chronic conditions should be at the table. I know it’s meant well, but it often sounds like we should “be at the table” like mommy’s little helper: not really helpful.

We and all marginalized groups should be “at the table” because there are insights that we alone carry. We know viscerally how to live with unending challenge and do joy in the midst. We know how to do “life after” – carrying the constant knowledge that the underlying condition is not gone, but the pain has let up a touch and that matters.

There is nothing resolved about what happened here. It was a serious disease flare-up and, for some, it ushered in heightened or new awareness of the seriousness of our nation’s long-chronic condition.

For those who already knew, you know the drill. But for those who feel newly aware, that’s okay. Welcome. Find mentors. Talk to people with “life in the midst” skills. Don’t go back to normal. It’s not possible anyway. Become actively involved in caring for our nation’s spiritual health. Every joyful-painful day.

Anika Hanisch has lived in Montana for almost 25 years, but she was raised in the Twin Cities. She wrote this piece while staying in Minneapolis for a couple weeks, volunteering for Longfellow Nokomis Messenger, Southwest Voices, and Midway Como Frogtown Monitor.