Identity

The Disability Advocate Risking Her Life to Save Health Care

Kati McFarland has traveled the country—facing arrest and detention multiple times—to confront Congress members seeking to repeal the Affordable Care Act.
December 29, 2017, 3:50pm

You Know Who Rules? is Broadly's December interview series highlighting women and non-binary people who accomplished incredible things during the dumpster fire of a year that was 2017.

After the recent tax bill passed, President Donald Trump bragged that he "essentially repealed Obamacare"—a statement a majority of Republicans surveyed believed. In truth, only one piece of the Affordable Care Act—the individual mandate—was scrapped in the bill; the rest of the legislation has been preserved. How? Despite repeated efforts from the GOP, a group of persistent Americans spent 2017 reminding our representatives how much we need ACA protections and subsidies.

One of these activists is Kati McFarland. I met Kati on a muggy day in Washington, D.C. last July after we were both arrested in the halls of Congress and taken to the same site to be processed. We sat together in plastic zip-ties, alongside 80 others who had blocked the Senate doorways in protest of the ACA repeal. The Capitol police had cuffed most of our comrades in the traditional way, hands behind their backs, but Kati and I had our wrists restrained in front of us. I needed this accommodation due to an arm condition I have called lymphedema, which is the result of breast cancer treatment. Kati needed it because of her own medical history; she has Ehlers-Danlos Syndrome, a genetic disorder that impairs her ability to walk and stand.

Both of us came to D.C. and engaged in non-violent civil disobedience to fight for our lives. It was my first time participating in a direct action of this type, but Kati, 26, was already something of a veteran. In February, the music and business student had a public showdown with her Arkansas senator, Tom Cotton, at a town hall meeting, explaining that she had pre-existing conditions and depended on elements of the ACA to manage them. "I will die [if the law is repealed]. That is not hyperbole," she told him. Kati later traveled to Washington from her home in Springdale, Arkansas, joining a variety of social justice groups, including Housing Works and the Center for Popular Democracy, to confront her Congress members, facing arrest and detention multiple times.

Broadly spoke with the activist about emerging as a leader of the growing movement of "healthcare warriors" and what we can do to make progressive politics more inclusive.

Kati participating in a "die-in" in Bentonville Square

BROADLY: How did you first get involved in healthcare activism?
KATI MCFARLAND: It boils down to the election. I felt scared, directionless. I literally hopped on the first ride out of town into direct action, joining my church's young adult lay chaplain and about half a dozen others on a four day trip to deliver firewood to Standing Rock, North Dakota, in November of [2016]. I met a lot of wonderful people, and though it was terrifying…it felt right. We left in the middle of the blizzard the next night. [At home] Senator Cotton's town hall ultimately brought me to the attention of people who got me to D.C. later many times this year, and it was the first thing I did since Standing Rock that felt like real action. For me, no matter the physical and psychological cost, face time and direct action is now what I feel called to and the only thing that makes me feel like I'm making a difference.

When we were in the halls of Congress, you said that you would starve to death without your feeding tube. Do you think the public fully understands that the Trump/GOP agenda is actually life threatening for sick people like us? Do politicians?

I think people get it, but they don't want to—the reality of disability and chronic illness as something that could strike anyone, at any moment, scares people…due to fear of the unknown, and fear of disabled people themselves because of what society perpetuates about us. Politicians are much the same, but in addition to the self-delusion, or maybe instead of it, I think there's an element of being even further removed and isolated by the privilege and power that either got them into office or was afforded to them once they got there. Politicians know that even if they do get sick like us, they won't have to choose between COBRA premiums and rent.

What has been the single most meaningful or exciting moment for you during the past year of your activism?
Being arrested in the House gallery was huge; having the entire floor look up, knowing from some of their expressions, on both sides of the aisle, that for a moment you've shattered that bubble I mentioned earlier, of isolation, of thinking it could never happen to you. Confronting them with a reality that so many Americans like myself face, just for a moment, the rush of speaking truth to power, is unique.

Do you have anything to share about what it’s like to be arrested and detained as someone with the extra vulnerability of being a wheelchair user and needing access to fluids and medications?
It's scary, honestly. The first time I was arrested, my IV infusion finished a bit too early, thanks to a mis-calibrated pump, and I was left needing to Heparin lock my port to prevent any clots while in cuffs. In the police van, I was honestly scared for my life. You're supposed to Heparin lock a port within 15 minutes, and my family is pre-disposed to clotting and stroke, but despite…the urging of doctors and nurses I was arrested with, the cops dug in their heels and it wasn't until the 20-minute mark that they faced me to a wall and swore me to silence about removing my cuffs so I could heplock myself. [Later], being handcuffed without feeding tube formula or medications for over 20 hours, to an ER bed, was painful, uncomfortable, and humiliating. But there's a certain vulnerability you have to open yourself up to, to express your healthcare story, which extends to opening yourself up to possible bodily harm.

Are progressive politics in general—and "the resistance" in particular—accessible, inclusive, and diverse enough?
No. I can't count the number of Women's Marches that had no disabled speakers…And even just getting to events, the lack of busses with lifts, the immediate default to climbing of stairs, in big actions, the forgetting to let rollers go ahead of the pack a bit so we can even see above heads. I can't begin to encapsulate it because I can't…remember the myriad of microaggressions I face even from my good, able-bodied friends and mentors in this fight.

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Do you have any advice for other sick and/or disabled folks who want to join this fight but have a hard time physically managing things like air travel, arrests, long days of shouting and moving around, etc? Where does self-care come in to play here?
Let yourself recover, let yourself accept help, but don't push yourself beyond what you can handle if it's not something you won't be able to live with. I think I've trained my body into these cycles of exertion and rest. I've accepted the risks of bodily harm and worsened health in exchange for the movement and the work of resistance. I get the question a lot, but basically: if you can't [do it], don't, and no one should think any less of you. But if you're like me and you feel pushed to do it in your soul, you will find a way to do it anyway, and pay the price if you must.

Where do you see healthcare activism headed in 2018? Should we be fighting to take back the House and Senate, or will there be other opportunities to resist before the November elections? Strategically, where should our energy be going?
Our energy has already been spent so thoroughly, sometimes I wonder if there is anywhere to go in 2018. But the answer really is everywhere. We must push progressive candidates to truly commit to things like the Disability Integration Act and ACA stabilization, if not universal healthcare. We must involve ourselves in local campaigns and perpetuate [the idea] that we are humans, worthy of consideration and attention and effort. We must continue in direct action and non-violent civil disobedience to shame those who have voted wrongly…We must organize on all fronts.