Story by Tegan Shockley, December 11, 2020

The cat seems to know when Kati McFarland is emotional. It rubs its head against McFarland, who prefers gender-neutral pronouns and is a wheelchair user, as they contemplate the different ways they could die: starvation, a cardiac episode or dying from exposure if they become homeless again. McFarland thinks their death could easily be avoided, but in the United States, the combination of their disability and financial burden just might kill them.

  Looking at McFarland, 29, you can’t tell anything is wrong. You can’t see the IV port in McFarland’s chest. You can’t see the feeding tube that connects to McFarland’s small intestine and not their stomach, which is paralyzed. You don’t know the constant pain McFarland deals with or that stairs aren’t really an issue, but endurance is. 

  McFarland has an incurable disease called Ehlers-Danlos Syndrome. It is a group of genetic disorders that affect a person’s tissues and can cause overly flexible joints and stretchy or fragile skin. The average life expectancy for someone with EDS is 48 years, according to the National Institutes of Health. McFarland was diagnosed in 2015 when they were 24 years old.

  Arriving at McFarland’s apartment, it’s surprising to learn that they live on the second story of a white brick building. McFarland can get around by leaning on the narrow walls in their apartment, but they have to use a wheelchair for longer distances because their bones and muscles are weak. 

The rickety front door would come to be symbolic of the person living behind it: fragile but still standing. 

  On multiple occasions, McFarland has advocated for disability rights. They have spoken at rallies, went to Washington D.C. to protest and even tried to run for local office before their health declined. One goal is to go back to school to help make a difference. McFarland fights for their community not as if their life depends on it but because it does.

  For a couple moments in their life, McFarland’s activism has led to fleeting fame. With almost $1,700 a month in expenses, which mainly goes to rent for an upstairs apartment and a $450 treatment for chronic pain, McFarland turned to fundraising. 

  “When your parents are dead, you’re disabled, you can’t work, you have no prospects, you get kind of desperate,” McFarland said. “I finally had to put together a Go Fund Me … and I raised $50,000 (in 2017).”

  Although $50,000 seems like a lot of money, it lasted a little over a year. It was only possible because McFarland confronted Tom Cotton, a Republican Arkansas senator, at a town hall meeting in February 2017 about the Affordable Care Act. They went viral. 

  McFarland said without coverage through the ACA, they would die. McFarland continued to grill Cotton with questions that he continued to answer vaguely, despite loud boos from the crowd. McFarland’s vulnerability and the nation’s atmosphere in 2017 made the video popular. News stations reached out to McFarland, who ended up doing an interview with CNN’s Don Lemon.

  During the start of shutdowns for Covid-19, McFarland again went viral via Twitter. Their pinned tweet posted March 14 has 9.2 thousand likes, outlining their conditions. “I turned 29 2 weeks ago. I’m #HighRiskCovid19 & deserve to see 30.” McFarland has been outspoken on social media about the election and issues in society like LGBTQ rights. McFarland made sure to vote Biden this year with a mail-in ballot.

  McFarland’s activism does not stop at one town hall meeting in Arkansas or their presence on Twitter. They went to Washington D.C. 12 times in 2017 to protest the ACA repeal, which was not passed, with the Center for Popular Democracy.  Dozens of attempts were made to repeal it, but officials couldn’t come to an agreement. President Trump has carved away at the ACA and healthcare through executive orders since then.

  In non-violent acts, McFarland and other volunteer protesters confronted Congress members to voice their concerns. Despite the possibility of arrest, people would chant in hallways outside offices and demand meetings with representatives. McFarland was arrested seven times. 

  During one arrest, McFarland was transferred to the hospital because police didn’t know what to do with their feeding tube. 

  “I was handcuffed to an ER bed,” McFarland said. “They were like, ‘Well, we don’t want to deal with a disabled person, so we’re going to pawn you off onto the hospital.’”

  Cameron Smith, a student at the University of Kansas, also protested with the CPD in 2017. Smith thought it would be one of her only chances to fight for something she believed in at the capitol, so she took the red-eye to D.C. where she eventually met McFarland. 

  McFarland was sitting on their phone in a hotel lobby when Smith approached and asked why they were there. Smith wanted to connect with McFarland because they were one of the only people around her age. Three hours later, both of them were handcuffed.

  “We were banging on walls, we were chanting, ‘Kill the bill! Don’t kill us,’ Smith said. “It circled around one common goal of stopping the bill from passing because everyone there knew how detrimental that tax reform would be to people surviving off of Medicaid.”

  Because Smith works for the government as a legislative assistant, she gets to see advocacy from a different perspective. Once, she overheard democratic office members say they were happy and proud to see CPD people protesting at the senate. 

  “I immediately thought of Kati and all the other key members from 2017, and I was like, ‘That’s the crew,’” Smith said. “Kati mobilized the challenges of her life to make her a prominent figure in politics and advocacy.”

  Smith thinks McFarland is inspirational on multiple levels, from makeup skills to advocacy. Although they’ve struggled to stay in contact since D.C., they stay up-to-date on social media. 

  “I still am supporting her every day from afar, supporting her love of ice hockey and supporting her love of protesting,” Smith said. “She’s a living, breathing example of what everyone should strive to be.” 

  McFarland chose to spend energy when they could be an activist, yet they can’t work a normal job. Because of their condition, they have depended entirely on disability checks for income. In the U.S., there are two programs that provide benefits for people who the government determines are disabled: Social Security Disability Insurance and Supplemental Security Income. McFarland thinks the system could be better, especially because the income is barely enough to survive. 

  There is more to McFarland than their disability however. The herbs and mint leaves that line their windows tell you they like plants. Scrolling through Twitter you can see how much they enjoy the Korean boys band BTS. Their love for animals is evident too. One of McFarland’s four cats curls up on the wheelchair, which has a broken motor, as Red the rescue Greyhound gets cozy on his bed. But pain is also a huge part of McFarland’s life.

  “If you suddenly inflicted the level of pain that chronic patients feel on an able-body person, they would be completely incapacitated,” McFarland said. “Humans have a great knack for adaptation, but that doesn’t mean I’m functional. I’m still pretty much bed-bound.”

  McFarland grew up in Missouri. They lived in the Springfield area and started to share memories, like the 2007 ice storm that kept people inside for two weeks. McFarland is an only child, and both of their parents have passed away. 

  McFarland’s mom, who had Type I diabetes, died from cancer when they were 10, so Kati was used to the medical arena before getting diagnosed with EDS. By 4-years-old, McFarland knew how to call 911, and by the time they were six they knew how to inject insulin (via fruit practice). Their dad died from a stroke in 2016 while McFarland attempted CPR. McFarland is alone, so they depend on friends.

  “Without family, that really compounds things,” they said. “So my circumstances, because my family is either uncaring or dead, fucks me over extremely.”

  In the small room at St. Martin’s Episcopal Center at the University of Arkansas, McFarland and Kristen McIntosh talk about their recent trip to the store. McIntosh sews a vest while McFarland goes through old Instagram posts on their laptop. It’s late, but this is where they like to hang out. McIntosh is more reserved and doesn’t always catch McFarland’s dark-humored sarcasm.

   McIntosh, a student at Northwest Arkansas Community College, met McFarland at St. Martin’s. They share similar experiences of a deceased parent, mental health issues and being part of the LGBTQIA+ community. They are also connected because McIntosh cares about wheelchair access, and they joke about being broke.

  McIntosh wants to start a ramp building ministry in Northwest Arkansas. McIntosh’s inspiration stems from her father, who was a double-amputee, and McFarland, who is also a wheelchair user. It’s difficult to begin because she doesn’t have enough money. 

  “The only reason (my dad) could get to our house was because our church built a ramp,” McIntosh said. “I have a binder (of ideas) and I’m trying to figure out how to start one … because it’s something that I care a lot about.”

  On a good day, McFarland spends time on Twitter and takes Red on a walk. Because they don’t have a car, McFarland can’t go anywhere on their own. (Their wheelchair, which costs about $12,000, also needs repairs.) McFarland depends on friends to take them to the community center or to get groceries. McIntosh doesn’t see McFarland’s friendship as a burden, so anytime she’s going to the store she’ll reach out to McFarland. 

  “We usually go shopping together because if you get overstimulated, if you’re me or them, sometimes having another person there is really helpful,” McIntosh said.

  McFarland’s health is linked to money. When insurance and disability checks are in order, they can focus more on their physical well-being and hobbies like hockey or photography. When McFarland lost their health insurance in 2018, they quickly became homeless. After staying with a friend for a short time, McFarland moved to their aunt’s home in Joplin, Missouri, in November of that year.

  But things got worse. Without their social security check, McFarland couldn’t afford to replace their feeding tube. This forced them to take medication by mouth, leading to a bleeding ulcer that nearly killed them in January 2019.

  “I woke up at 4 a.m. vomiting blood,” McFarland said. “Well, I couldn’t even tell if it was blood because it looked purple and the walls looked green even though they were white … I kind of had an innate sense of ‘I am dying.’”

  McFarland remembers the atmosphere quickly shifted when the blood tests came back. In a blur, McFarland was rushed to surgery and stayed in the Intensive Care Unit for four days at Mercy Hospital in Joplin. Even though their new health insurance started Jan. 1, payments went wrong while McFarland was in the ICU and their car was later repossessed. 

  “My (conditions) are not inherently fatal, but I still sort of live on this knife’s edge,” McFarland said. “Without the kindness of strangers’ fundraising … I would either starve to death or, without my medication, I would eventually pass out more, hit my head and die that way.”

  McFarland has made new friends at the center that is right across UA’s campus, which she used to attend. They were getting a degree in violin performance and business, but McFarland had to drop out again because of their declining health and financial drain. The first time McFarland went to college was at Missouri State University in 2009. McFarland feels like it’s one blow after another that keeps them from fully moving forward in life.

 “I just want to finish my degree like anyone,” McFarland said. “I just want to finish my degree, and then go onto the next degree, finish that, get a job, do some good in the world, have a family and just have a good life.” 

  The next time McFarland can go to school, they want to become a doctor. I was surprised when they said this, but I realize it’s my own ignorance. McFarland knows medical professionals who have EDS, and they have inspired McFarland to pursue this career. McFarland feels like doctors and nurses don’t really listen to them, and if they were a doctor, they could make the field better.

  “For some reason people just don’t seem to listen to or think of disabled people as humans,” McFarland said. “I make a lot of very careful choices about how I present myself. You can’t look to put together or they think you’re a faker, but you can’t be too sloppy because then they will dismiss you even more.”

  McFarland’s persevering character must constantly battle the physical state they are in. Unless it’s an errand day with the help of friends like McIntosh, McFarland is typically bed or couch bound. Sometimes they skip basic daily activities like showering or brushing their teeth because they don’t have the energy. Days can be filled with calls to providers and debilitating migraines. McFarland tries to have a sense of normalcy by staying online, but what is a 29-year-old faced with the real possibility of death supposed to do? 

  McFarland chooses to fight, advocate and survive.