My friend Lee Caggiano, who died several weeks ago, was not famous. But through her work, she changed one particular corner of the world: Lee made people who stutter, like me, want to talk.
Like 99 percent of the population, Lee was fluent, meaning she never knew what it was like to stutter herself. But her son did. His experience with stuttering made her pivot her life and go back to school. She completed a master’s degree in speech-language pathology in her early 40s and went on to treat patients and teach at NYU and elsewhere.
Her greatest accomplishment, and the reason hundreds of stutterers across the country have been mourning her death, is the profound work she did to de-pathologize this disorder. Lee didn’t see stuttering as a weakness, a failure, a flaw. She didn’t think she could “cure” you. She didn’t try to. She refused to infantilize us because of the way we speak. Do you know how good that feels?
Lee helped me see a purer version of myself, even if it was something I had avoided wanting to see.
There is no shortage of support groups, camps, and conferences devoted to people who stutter, yet the community remains fairly fragmented. Some of these organizations aim to promote self-acceptance while also championing work toward a “cure” … for the very thing you’re supposed to accept. Twenty-six years ago, Lee co-founded Friends: The National Association of Young People Who Stutter. Friends stands out for its unmatched rawness and humanity, and for the way it takes fluency (smooth, stutter-free speech) off a pedestal. It’s a nonprofit organization with a DIY ethos; Lee never even took a salary. The group’s main event is an annual summer gathering. Those three days are infused with a candor that’s hard to describe unless you experience it firsthand.
[John Hendrickson: Why I dread saying my own name]
Lee knew that getting stutterers and their families to talk about the depths of the communication disorder was the only way that stutterers would start to move toward lucidity, toward fluidity. But not fluency: She implored parents to stop caring about the smoothness of their child’s speech. This was a radical message, and she was among the small percentage of speech-language pathologists in the United States who unequivocally embraced this approach. It’s a refreshing perspective if for no other reason than that it expands the worldview of patients and their families: A stutterer can be considered a success if they simply find the courage to live their life.
I came to adopt this perspective later than most. I only learned about the organization in the fall of 2019, when I wrote an article about President Joe Biden’s lifelong journey with stuttering. And I only attended my first in-person Friends convention in the summer of 2021 as part of the research I was doing for my book about stuttering.
I saw how stutterers and their families crammed into a no-frills hotel and faced the reality of this multilayered disorder in drab conference rooms. Here, stuttering was not treated as a “good” or a “bad,” but as something far more complex: an “is.” At many points throughout the weekend, attendees stood up and spoke extemporaneously. You never knew what anyone, child or adult, was about to say when they approached the mic. Often, what came out was profound.
Some people offered a positive, empowering message about stuttering when it was their turn to speak. Others opted for the exact opposite: how draining the disorder is, how isolating it can be, how some people find themselves using alcohol or other drugs to cope. Such moments can be tense. Watching someone else stutter and block, even if you yourself stutter, can be uncomfortable. But, following Lee’s lead, everyone learned to lean into the uncertainty, to the gray area. Though she was technically in charge of the event, Lee had an almost pathological avoidance of policing anybody, especially when it came to the content or form of their speech. She trusted that everyone in the room could handle whatever was about to be said.
I stayed at an Airbnb about half an hour away, rather than at the hotel with everyone else. I spent my days lurking in the back of the conference room, jotting down notes, occasionally finding people to interview. I was careful to keep an emotional distance—playing the role of a journalist on a story, even though I was writing a reported memoir and those rules didn’t necessarily apply.
Lee politely, and then less politely, rolled her eyes at me and, in the space of a few words, asked what my deal was. When I told her, she pushed me to not merely document what was happening but to let my guard down and become part of it. She needed me to understand that I already was part of this community, given the way I talked. She implied that others were waiting for me to put my pen and notebook away. I nodded, but I kept my distance. Then on the final day, I unexpectedly approached the mic and shared something that I had never articulated before: that the fluent people in your life may never truly understand what it’s like to stutter, and that at some point, you, yourself, have to be okay with that. She stood a few feet away from me, looking on, not with a smile or tears, but with a satisfied nod.
The following year, Lee invited me to be one of the keynote speakers at the conference. The speech I wrote was titled “Closing Distance” and attempted to expand on what I had said the previous summer. My parents, my brother, my wife, and my sister-in-law had all come to support me in the audience. I remember taking the elevator up to my room as my time slot approached to rehearse my words and change into nicer clothes. Back downstairs, right before I went onstage, Lee rolled her eyes at me again. “Are you going to wear that blazer the whole time?” she teased. She hadn’t asked to see a copy of my speech in advance, nor had she even wondered what it was about. But she could clearly see that I was still trying to play a part, to put distance between myself and the others, who were dressed more casually. She wasn’t trying to cut me down—she was treating me like she treated everyone: as someone who didn’t need to be given slack, or pitied, or babied. We were all equals. Once again, she was challenging me to see myself as a community member, not as a guest speaker or an interloper.
Lee died a couple of weeks before Thanksgiving, of metastatic lung cancer at the age of 68. She was an old-school New Yorker with a thick Long Island accent, but several years ago she had moved to Colorado to be closer to her adult children. One of them, her daughter, gave birth to a baby girl over the summer, shortly after Lee had received her diagnosis. Many stutterers and therapists saw Lee as a surrogate mother, and she knew this, but she rightly prioritized her own family. She spent the final days of her life stiff-arming texts and calls and emails from the many people whose lives she had changed, because she wanted to spend those last moments with her husband, children, and grandchildren. She died at home in a bed facing a window, looking out at the mountains.
[Read: An ‘absolute explosion’ of stuttering breakthroughs]
Some people are natural community builders and leaders, with a gravitational pull. Lee of course had those qualities, but she also shirked attention. She would have told me that writing about her was a waste of time—that I should be focusing on other, more “interesting” or “important” people. The reality, which I’m not sure she ever knew, and which I now realize I never properly told her, is that she was one of the most compelling people I’ve ever met.
In November, hundreds of stutterers and their families gathered on Zoom for an impromptu memorial. People shared stories and reminisced for hours—parents speaking of how she’d brought them closer to their children, old patients and students noting how she’d reframed their outlook on the disorder. Barry Yeoman, a freelance journalist and longtime leader in the LGBTQ stuttering community, talked about how, at a Friends conference nearly 20 years ago in San Francisco, Lee fostered a space where he could be his full self and encourage others to do the same.
On the first Saturday of December, scores of people flew to Colorado to sit around her home and swap more memories. And a week after that, a group gathered in New York to toast her at a bar. The night ended with karaoke—singing relies on a different neural pathway than speaking, and no one stutters when they belt out songs off-key.
Because of her illness, Lee had missed this past summer’s Friends convention for the first time. She had sent a video message; she hoped to be there next year. Of course, she won’t be, but people will show up anyway. They will walk to the mic, even if they don’t feel ready to, and they will speak.