Fiona Cauley: Comedy, Friedreich's Ataxia, and Finding Your Voice

Fiona Cauley: Comedy, Friedreich’s Ataxia, and Finding Your Voice

Based on a transcript from This Past Weekend featuring Fiona Cauley.

Executive Summary

Fiona Cauley, a comedian and podcaster known for her appearances on Kill Tony and The Tonight Show with Jimmy Fallon, sits down with Theo Von for a wide-ranging and deeply funny conversation. Cauley lives with Friedreich’s ataxia, a rare progressive neurological disease that affects roughly 5,000 people in the United States. Their discussion covers her diagnosis journey, the realities of navigating the world in a wheelchair, how comedy gave her a second wind after years of depression, and why she believes connection is the most important thing in life.

Key insights from this conversation:

  • Friedreich’s ataxia is caused by a deficiency of a single protein called frataxin, and all three of Fiona’s siblings have it
  • She was misdiagnosed and dismissed for years before finally getting an answer at age 18
  • Kill Tony changed her career overnight, growing her following from 30,000 to over half a million
  • New treatments like Skyclaris offer hope for pausing the disease’s progression, and researchers believe a cure may come within five to ten years
  • Comedy became her way of processing grief and giving a voice to the disability community
  • The disability community remains the largest minority group yet has seen the least progress in accessibility

What Is Friedreich’s Ataxia

Early in the conversation, Theo asks Fiona about her condition, and she explains it plainly. Friedreich’s ataxia is a rare progressive neurological disease. The root cause is surprisingly simple: her body does not produce enough of a protein called frataxin. Both of her parents were carriers without knowing it, and all three of their children ended up with the condition.

The disease is progressive. Fiona was once an athlete, then began walking unsteadily, transitioned to using a cane, and now uses a powered wheelchair. The condition also affects her speech, since the tongue is a muscle, which means she speaks more slowly and deliberately than she once did.

When she was first diagnosed at 18, doctors told her the life expectancy was around 40 and that she would progressively lose the ability to walk, talk, see, and hear. That prognosis sent her into years of depression and reckless behavior. She is now on a medication called Skyclaris, the only approved treatment for Friedreich’s ataxia, which aims to pause the progression. Researchers are also working on frataxin replacement therapy, and Fiona expressed genuine optimism that a cure could arrive within the next decade.

The Long Road to Diagnosis

One of the most striking parts of the conversation is Fiona’s account of how long it took to get diagnosed. Symptoms appeared at age 15 when she was playing volleyball. She started stumbling during practice drills, and her coach thought she was not taking things seriously. Her school principal would smell her breath, assuming she was drunk. Her family accused her of copying her older sister, who had other health issues like scoliosis.

Fiona describes being gaslit to the point where she believed the problem was mental, that she was making it all up. She got detention for using the school elevator because no one believed she needed it after repeatedly falling on the stairs. It was not until she was 18 that she took herself to a neurologist, and even then her mother told her this had to be the last attempt at finding something wrong.

When the diagnosis came back, Fiona was just excited to be proven right. She did not fully grasp the severity of what she had been told. Her older sister was then tested and received the same diagnosis, followed by her younger brother a year and a half ago. He still walks.

Kill Tony, Fallon, and the Comedy Breakthrough

Fiona has been doing comedy for about five years. She was working the Nashville comedy scene, featuring at Zanies, when someone suggested she go on Kill Tony. She did not even know what the show was at first. Her appearance changed everything practically overnight, taking her social media following from around 30,000 to over half a million.

She describes the Kill Tony experience as intensely stressful. It is not just the room of 300 people watching you; it is the millions who will see the clip online. The show’s format, where panelists can be brutal to performers, gives it a Roman Colosseum energy. For Fiona, the logistics are also different. She has to be carried up back stairs, wait by dumpsters, and navigate spaces never designed for someone in a wheelchair.

She has also appeared on The Tonight Show with Jimmy Fallon, which she found less stressful since the host is not there to roast you. She noted an interesting cultural difference between the two platforms: Fallon impressed her grandparents and gave her mother something to send to people as proof her daughter was really a comedian, while Kill Tony has a bigger digital reach but is more divisive. Late night is no longer what it used to be.

Fiona has now been on two Netflix specials through Kill Tony, including one filmed at Madison Square Garden and another called Once Upon a Time in Texas. She was featured on the Netflix promotional poster, and the show let her plug her foundation to raise money for Friedreich’s ataxia research.

Wild Stories from the Road

Some of the episode’s biggest laughs come from Fiona’s storytelling. She recounts a night in Nashville that escalated from terrifying to surreal. She was headed to a comedy show called Stone Cold Sober, where she was playing the drunk contestant. Having pre-gamed at home, she ordered an Uber and ended up with a driver who was swerving, ranting about liberals, and then pulled a gun from the glove compartment mid-drive on the interstate. The driver poked Fiona in the arm with the gun, not as a threat but to make a point about the Second Amendment.

Fiona was texting a group chat in a panic, but no one was at the venue when she arrived. Fueled by adrenaline, she jumped out of the car and pulled her own wheelchair from the backseat, something she would not normally be able to do.

The night got stranger from there. A married couple she had met at the Las Vegas airport recognized her at the show, bought her drinks, and then brought her to what turned out to be a private party hosted by rapper Yelawolf. He had security kick out the married couple when they got too forward, fed Fiona pasta and pizza, and posted her on his Instagram story. She woke up to 60 missed calls from friends who had seen the posts and thought she had been kidnapped.

Fiona opens up about how the diagnosis affected her romantic life. While she was still walking with a cane, she would try to hide the severity of her condition from dates, calling herself “clinically clumsy.” She knew the disease was progressive and felt it was unfair to sign someone up for that future without telling them.

She met her husband Matt, also a comedian, at an open mic in Nashville. He proposed outside Zanies comedy club with her name on the marquee, after tricking her into thinking a famous comedian wanted to meet her. She recalls not actually saying yes but instead repeatedly telling him she was going to throw up on him.

Matt signed up knowing the full picture, including the original life expectancy of 40. Now, with new treatments offering hope for a longer timeline, they travel and perform together. Matt features for Fiona on the road, and they are beginning to alternate headlining weekends. She credits the relationship with teaching her that connection is what matters most.

Disability, Accessibility, and Being Underestimated

Throughout the conversation, Fiona shares observations about what able-bodied people do not realize. One of the most common misconceptions is that people assume she is mentally disabled because of the way she speaks. She tells a story about being at a bar where she witnessed someone attempting to drug her friend’s drink. When she intervened, the man told security that Fiona was mentally disabled and did not remember him. She could not convince the security guards otherwise, and they were all thrown out, though she succeeded in keeping her friend safe.

She talks about people assuming her husband is her caregiver rather than her partner. She discusses the frustration of unsolicited sympathy that is really about the other person imagining how terrible their own life would be in her situation. She points out that the disability community is the most inclusive minority, since anyone can join it at any time through accident or illness.

Accessibility remains a major issue. Fiona notes that making spaces accessible is expensive, and since it always comes down to money, progress is painfully slow. She mentions that many comedy clubs, especially in New York, are simply inaccessible. At restaurants, her husband goes inside, photographs the menu, and texts it to her while she waits on the sidewalk.

She cites Judy Heumann, the disability rights activist who helped pass the Americans with Disabilities Act, as an inspiration. Before the ADA, some businesses displayed signs refusing entry to disabled people because they made other customers uncomfortable.

Comedy as Purpose

Fiona describes how her diagnosis stripped away everything superficial and brought her to a core truth: connection is all that matters. Before the diagnosis, she says she was vapid and did not value her relationships. Losing physical abilities forced a reckoning with what actually matters in life.

“All you have is connection. So the more you can connect with people, the bigger the impact you leave.”

She sees deep irony in the fact that the disease threatening to take her voice is the same thing that gave her something worth saying. She wants to use comedy and her platform to give a voice to the disability community. She has a YouTube series called Capable, a TEDx talk in the works, and her podcast Ramping Up with her husband Matt.

She also floated an idea for two comedy specials: one called Before, recorded now while she is in a wheelchair, and one called After, once the anticipated cure arrives and she is walking again.

Key Takeaways

  1. One protein, massive consequences: Friedreich’s ataxia comes down to a frataxin deficiency, showing how a single molecular difference can reshape an entire life
  2. Advocacy starts with being believed: Fiona spent years being told nothing was wrong before a diagnosis validated what she already knew
  3. Kill Tony is the new launching pad: The show’s digital reach now exceeds traditional late-night television for breaking new comedians
  4. Disability is the most inclusive minority: Anyone can become disabled at any time, yet the community sees the least progress
  5. Connection over comfort: Losing physical ability forced Fiona to discover that relationships and human connection are the only things that truly matter
  6. Hope is returning: New medications and active research into frataxin replacement therapy give Fiona reason to believe a cure will arrive in her lifetime
  7. Accessibility costs money, so it moves slowly: The built environment remains hostile to wheelchair users, from comedy clubs to apartment buildings to entire cities
  8. Ask, do not assume: Disabled people know when they need help and know how to ask for it; unsolicited assumptions about their capabilities are more harmful than helpful

Follow Fiona Cauley on social media and check out her podcast Ramping Up with her husband Matt Taylor.