Groton ― Autumn Hanscom recalled that when she met another person with Freeman-Sheldon syndrome in Boston while in her 20s, “it just sort of opened up my world.” They talked for eight hours, comparing notes.

It’s a rare congenital condition primarily affecting craniofacial muscles, meaning ones of the face and skull, and is also called whistling face syndrome. For Hanscom, it meant the traumatic experience of having an estimated 30 surgeries before age 10.

When she was born in 1977, only 36 cases had been reported in literature, and the National Organization for Rare Disorders now estimates 200 to 300 people worldwide may be affected.

But Hanscom has managed to find a bunch of them. A group of people from around the world ― Germany, South Africa, Poland, Canada, New Zealand, China ― have connected online, and if they’re lucky, maybe eight people join one of their bimonthly conference calls.

“We all look so similar; it’s like we’re part of this tribe of people, and it’s just this instant connection,” Hanscom said. But there’s also a range of manifestations: She was born with severe clubfoot in both feet, whereas others have severe scoliosis and back issues.

Outside of her job as philanthropy officer for Whale and Dolphin Conservation and role as a Groton Representative Town Meeting member, Hanscom has become active in the broader community of people with facial differences, which Face Equality International has defined as “an unusual-looking, scarred or asymmetrical face (or body) from any cause.”

She noted that in addition to congenital syndromes, this can include people with burns, skin conditions, and more.

The late James Partridge, who ended up with 40% of his body burned and years of surgeries after a car accident at age 18, founded Changing Faces in 1992. The British charity is part of Face Equality International, a coalition Partridge founded in 2018.

Hanscom is one of about 25 people in a lived experience working group FEI has for people with facial differences, and she is and gearing up for Face Equality Week, happening May 15 to 19 with a theme of stigma.

She also participated in a study published last year in the journal Stigma and Health that looks at how people with facial differences disclose or explain their condition. This is distinct from the “coming out” frameworks available to people with stigmatized but invisible identities, such as being gay or having a mental health condition.

“Strangers crave disclosure. People are naturally driven to understand and even place blame about the cause and nature of facial differences and visible disabilities,” study co-author Kathleen R. Bogart wrote in a Psychology Today article. She added that people with facial differences may wonder if they should explain “to get rid of the elephant in the room.”

The study characterized disclosure or nondisclosure of a condition as being “compelled” or “autonomous,” and each has subtypes. An example of a form of autonomous nondisclosure called concealment is wearing a mask during the pandemic to hide facial differences.

The study pseudonymously referenced Hanscom’s engagement in “selective disclosure” while interviewing for jobs. After being one of 30 people laid off from Mystic Aquarium in June 2020, she found that at the beginning of job interviews, “I could tell they’re not hearing anything I’m saying because they’re basically looking at me and going, ‘What?’”

So, she started reaching out ahead of interviews to explain her condition and say it has no impact on her ability to work, limiting awkwardness when the interview starts.

Her employer has invited her to be on its diversity advisory committee, and Hanscom has talked to others in the facial difference community about how they can be part of diversity initiatives in their offices.

Others with facial differences also have experiences that are unfamiliar to Hanscom. While Instagram and TikTok can be a great way for people with craniofacial conditions to educate others, Hanscom said some get blocked as graphic content. Another issue is that some TikTok filters mimic specific craniofacial conditions.

An older but still pervasive issue is the ubiquity of movie villains with facial differences: Scar in “The Lion King,” the Joker and Two-Face, Doctor Poison in “Wonder Woman,” Freddy Krueger in “A Nightmare on Elm Street,” Darth Vader (when his face is revealed), multiple James Bond villains.

Changing Faces started the I Am Not Your Villain campaign to call on the film industry “to stop using scars, burns, marks and other visible differences as a shorthand for villainy.”

On the other hand, many people with facial differences don’t want to be seen as an inspiration just for existing; Hanscom recommended the TED Talk “I’m not your inspiration, thank you very much” from the late journalist, comedian and wheelchair user Stella Young.

Hanscom recalls one woman saying to her, “It’s so inspiring to see you out and about,” and the implication to her was, “So if you look like me, you’d be hiding under your bed or something?”

Owning her story

Hanscom said she learned that the cause of her condition was her parents camping for a few weeks at Los Alamos in New Mexico, the development site of the atomic bomb, very early in her mother’s pregnancy.

Hanscom said this cause was confirmed through genetic testing of her family, and she thinks it is worth sharing to show people there’s a human cost to nuclear weapons.

About two years ago, she acquired a newspaper article printed in the Bloomsburg, Penn.-based Press Enterprise in the late 1970s, accompanied by a photo of an adorable, pudgy-faced Autumn in her home at 14 months.

The article said Autumn was born with “facial abnormalities in addition to incorrectly aligned feet and legs,” and explained how she would soon be having three “corrective surgeries” on her eyes and upper skull, nose, and mouth area.

Reading this article as an adult, Hanscom was struck by repeated use of the word “fix” and how she felt broken as a child. She also said surgeries were botched and so she had to have additional ones.

“They had to widen my eye sockets when I was a baby to help my eyes develop, and then there were some muscular surgeries done on my eyes,” Hanscom explained. Plus she had surgery after surgery on her feet, until she stopped growing and had triple arthrodesis, a procedure that involves fusing three joints in the foot.

Hanscom recalled freaking out as a kid seeing hubcaps, because they reminded her of the operating room light. She still doesn’t like “circular shiny things,” opting not to hang the lids of pots and pans on the wall of the Groton apartment she shares with her partner.

She is seeing mental health as more of a focus now for kids with craniofacial conditions than she did in the 70s and 80s. And when parents of kids with Freeman-Sheldon syndrome reach out, she encourages them not to do too many surgeries, or at least wait until the kid is old enough to decide.

“It’s not just a physical face you’re dealing with; you’re dealing with the whole human,” she said.

Of all places, Hanscom found a safe space in school. She considered herself lucky to go to a small, private Quaker school where everyone knew each other from second grade on, so everyone was “so over it” by middle school and high school and nobody bothered her.

“I tried to develop socially more so that people would like me and that I would be popular, so that would be one way to sort of protect myself,” she said. “I think some people go the opposite direction. I was always very outgoing.”

Born in Pennsylvania, Hanscom grew up in the Baltimore area and then graduated from American University. She spent a decade working for Amnesty International but got laid off in 2009 amid the Great Recession.

She worked other jobs in Washington, D.C. and was married at the time. Hanscom recalled that her ex-husband was in a wheelchair and they would get comments when they went out together. He liked to make up stories, like that they were attacked by a shark ― an example of “false disclosure” from the aforementioned study.

After Hanscom got divorced and the grant that funded her job ended, she moved in 2016 to southeastern Connecticut to be near her younger sister. Mystic Aquarium hired her as a grants coordinator.

After the 2016 election, she promptly joined the Groton Democratic Town Committee and was elected to the RTM the following year.

“I just feel like my job is just to be out there for people to know me, almost like I gotta represent,” Hanscom said. She repeatedly talks about “owning” her story. And part of that means now working on a memoir.

She commented, “It’s almost like writing something for myself when I was younger, what I would want to see or read.”

e.moser@theday.com