HealthMatters
My pal Lee Caggiano, who died a number of weeks in the past, was not well-known. However via her work, she modified one specific nook of the world: Lee made individuals who stutter, like me, wish to discuss.
Like 99 p.c of the inhabitants, Lee was fluent, that means she by no means knew what it was wish to stutter herself. However her son did. His expertise with stuttering made her pivot her life and return to high school. She accomplished a grasp’s diploma in speech-language pathology in her early 40s and went on to deal with sufferers and train at NYU and elsewhere.
Her best accomplishment, and the explanation lots of of stutterers throughout the nation have been mourning her loss of life, is the profound work she did to de-pathologize this dysfunction. Lee didn’t see stuttering as a weak point, a failure, a flaw. She didn’t assume she might “treatment” you. She didn’t attempt to. She refused to infantilize us due to the best way we communicate. Are you aware how good that feels?
Lee helped me see a purer model of myself, even when it was one thing I had prevented desirous to see.
There isn’t a scarcity of assist teams, camps, and conferences dedicated to individuals who stutter, but the group stays pretty fragmented. A few of these organizations purpose to advertise self-acceptance whereas additionally championing work towards a “treatment” … for the very factor you’re supposed to simply accept. Twenty-six years in the past, Lee co-founded Mates: The Nationwide Affiliation of Younger Folks Who Stutter. Mates stands out for its unmatched rawness and humanity, and for the best way it takes fluency (clean, stutter-free speech) off a pedestal. It’s a nonprofit group with a DIY ethos; Lee by no means even took a wage. The group’s primary occasion is an annual summer time gathering. These three days are infused with a candor that’s exhausting to explain until you expertise it firsthand.
Lee knew that getting stutterers and their households to speak in regards to the depths of the communication dysfunction was the one approach that stutterers would begin to transfer towards lucidity, towards fluidity. However not fluency: She implored mother and father to cease caring in regards to the smoothness of their little one’s speech. This was a radical message, and she or he was among the many small proportion of speech-language pathologists in america who unequivocally embraced this method. It’s a refreshing perspective if for no different motive than that it expands the worldview of sufferers and their households: A stutterer could be thought-about a hit in the event that they merely discover the braveness to dwell their life.
I got here to undertake this angle later than most. I solely realized in regards to the group within the fall of 2019, once I wrote an article about President Joe Biden’s lifelong journey with stuttering. And I solely attended my first in-person Mates conference in the summertime of 2021 as a part of the analysis I used to be doing for my e-book about stuttering.
I noticed how stutterers and their households crammed right into a no-frills lodge and confronted the truth of this multilayered dysfunction in drab convention rooms. Right here, stuttering was not handled as a “good” or a “dangerous,” however as one thing much more advanced: an “is.” At many factors all through the weekend, attendees stood up and spoke extemporaneously. You by no means knew what anybody, little one or grownup, was about to say once they approached the mic. Usually, what got here out was profound.
Some folks provided a optimistic, empowering message about stuttering when it was their flip to talk. Others opted for the precise reverse: how draining the dysfunction is, how isolating it may be, how some folks discover themselves utilizing alcohol or different medicine to manage. Such moments could be tense. Watching another person stutter and block, even for those who your self stutter, could be uncomfortable. However, following Lee’s lead, everybody realized to lean into the uncertainty, to the grey space. Although she was technically accountable for the occasion, Lee had an virtually pathological avoidance of policing anyone, particularly when it got here to the content material or type of their speech. She trusted that everybody within the room might deal with no matter was about to be stated.
I stayed at an Airbnb about half an hour away, somewhat than on the lodge with everybody else. I spent my days lurking at the back of the convention room, jotting down notes, sometimes discovering folks to interview. I used to be cautious to maintain an emotional distance—enjoying the position of a journalist on a narrative, though I used to be writing a reported memoir and people guidelines didn’t essentially apply.
Lee politely, after which much less politely, rolled her eyes at me and, within the house of some phrases, requested what my deal was. Once I informed her, she pushed me to not merely doc what was occurring however to let my guard down and develop into a part of it. She wanted me to grasp that I already was a part of this group, given the best way I talked. She implied that others have been ready for me to place my pen and pocket book away. I nodded, however I saved my distance. Then on the ultimate day, I unexpectedly approached the mic and shared one thing that I had by no means articulated earlier than: that the fluent folks in your life could by no means actually perceive what it’s wish to stutter, and that in some unspecified time in the future, you, your self, must be okay with that. She stood just a few toes away from me, wanting on, not with a smile or tears, however with a happy nod.
The next 12 months, Lee invited me to be one of many keynote audio system on the convention. The speech I wrote was titled “Closing Distance” and tried to increase on what I had stated the earlier summer time. My mother and father, my brother, my spouse, and my sister-in-law had all come to assist me within the viewers. I bear in mind taking the elevator as much as my room as my time slot approached to rehearse my phrases and alter into nicer garments. Again downstairs, proper earlier than I went onstage, Lee rolled her eyes at me once more. “Are you going to put on that blazer the entire time?” she teased. She hadn’t requested to see a replica of my speech prematurely, nor had she even puzzled what it was about. However she might clearly see that I used to be nonetheless attempting to play an element, to place distance between myself and the others, who have been dressed extra casually. She wasn’t attempting to chop me down—she was treating me like she handled everybody: as somebody who didn’t should be given slack, or pitied, or babied. We have been all equals. As soon as once more, she was difficult me to see myself as a group member, not as a visitor speaker or an intruder.
Lee died a few weeks earlier than Thanksgiving, of metastatic lung most cancers on the age of 68. She was an old-school New Yorker with a thick Lengthy Island accent, however a number of years in the past she had moved to Colorado to be nearer to her grownup kids. Considered one of them, her daughter, gave start to a child lady over the summer time, shortly after Lee had obtained her prognosis. Many stutterers and therapists noticed Lee as a surrogate mom, and she or he knew this, however she rightly prioritized her circle of relatives. She spent the ultimate days of her life stiff-arming texts and calls and emails from the many individuals whose lives she had modified, as a result of she wished to spend these final moments along with her husband, kids, and grandchildren. She died at residence in a mattress going through a window, looking on the mountains.
Some persons are pure group builders and leaders, with a gravitational pull. Lee after all had these qualities, however she additionally shirked consideration. She would have informed me that writing about her was a waste of time—that I ought to be specializing in different, extra “attention-grabbing” or “essential” folks. The truth, which I’m undecided she ever knew, and which I now notice I by no means correctly informed her, is that she was probably the most compelling folks I’ve ever met.
In November, lots of of stutterers and their households gathered on Zoom for an impromptu memorial. Folks shared tales and reminisced for hours—mother and father talking of how she’d introduced them nearer to their kids, outdated sufferers and college students noting how she’d reframed their outlook on the dysfunction. Barry Yeoman, a contract journalist and longtime chief within the LGBTQ stuttering group, talked about how, at a Mates convention almost 20 years in the past in San Francisco, Lee fostered an area the place he might be his full self and encourage others to do the identical.
On the primary Saturday of December, scores of individuals flew to Colorado to sit down round her residence and swap extra reminiscences. And every week after that, a gaggle gathered in New York to toast her at a bar. The evening ended with karaoke—singing depends on a distinct neural pathway than talking, and nobody stutters once they belt out songs off-key.
Due to her sickness, Lee had missed this previous summer time’s Mates conference for the primary time. She had despatched a video message; she hoped to be there subsequent 12 months. After all, she received’t be, however folks will present up anyway. They are going to stroll to the mic, even when they don’t really feel able to, and they’re going to communicate.
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