‘They are the stars’: Photo exhibit highlights those with developmental disabilities

Editor’s note: Daily Hampshire Gazette photographer Carol Lollis participated in this exhibit.

“Wow, that’s me!” Lucie Pasche exclaimed one morning earlier this month. She was looking at a black-and-white photograph of herself on stage wearing a sequin dress, hand raised high and singing with the stage presence of a seasoned professional.

“I like being on stage to perform,” she said sitting in the lobby of Whole Children on Route 9 in Hadley. She is a singer for the Friendship Band, a group made up of people served by Pathlight, an organization that supports people with developmental disabilities and their families in Hampshire, Hampden, Franklin and Berkshire counties.

Pasche’s photograph, by photographer Isabella Dell’olio, will be among 30 portraits of people in the Pathlight community as part of the exhibit, “This Is Me: Portraits of Pathlight.” It opens on Friday, September 13, and runs throughout October at the Northampton Center for the Arts at 33 Hawley St.

“I feel confident and proud,” when singing on stage, Pasche said. The Friendship Band writes original songs, but Pasche said she also likes singing One Direction songs, with “What Makes You Beautiful” being a favorite of hers.

For the past few years, Pasche has performed with the Friendship Band at events such as the Holiday Bash, a Pathlight fundraiser this past winter. That’s where the photograph of her included in the show was taken. She also likes to dance, swim and play basketball and she is a Red Sox fan.

Dell’olio is one of 14 photographers that took portraits for the exhibit, and she also took portraits of two other members of Pathlight.

“It was a lucky moment,” Dell’olio said of Pasche’s photograph. Dell’olio had taken photographs of the Friendship Band’s rehearsals during the fall of 2018 initially as a personal project.

Gina-Louise Sciarra and Valle Dwight, who both work at Pathlight, had been inspired by a National Geographic black-and-white portraiture project, but when they saw Dell’olio’s photo of Lucie performing, they decided to emulate the portraiture project and do one for the people serviced by Pathlight.

“It started as a small project,” said Sciarra, or “G.L.” as she’s known at Pathlight. “It was going to be 12 portraits for Pathlight’s annual report and calendar, and it grew in a beautiful and organic way that turned into 33 portraits and an amazing exhibit at the Northampton Center for the Arts.”

Photographers from the area with different types of experiences took part in the project; an Amherst College professor, a Daily Hampshire Gazette photographer, professional photographers, and a college student were among those involved.

“‘This Is Me’ is a visual representation of Pathlight’s person-centered mission,” said executive director Ruth Banta. “All too often people with disabilities are blurred in the background. At Pathlight the people we serve are our focus, as we support their self-directed dreams and goals.”

Sciarra echoed that sentiment. “We are the supporting role and they are the stars,” she said. “We believe they should live full lives in their own communities.”

The origins of Pathlight trace back to 1952 when five mothers of young children with developmental disabilities founded an organization to serve those individuals in Springfield and Hampden County. It was common practice at the time to institutionalize people with disabilities and those five mothers rejected that, and instead, opted to create an environment where people with disabilities could be valued members of their communities.

Pathlight has since only grown and serves all of western Massachusetts and northern Worcester County, providing skill-building classes, educational advocacy, employment support and home services to children, teens and adults.

Pasche’s father, Jean-Pierre Pasche, owns Big Red Frame in Easthampton and he donated his services to frame the portraits for the exhibit. He said Pasche has participated in the Milestones program for the past seven years and she has learned cooking, shopping and laundry skills over the years.

“It’s an environment that is really inclusive and understanding,” Jean-Pierre said. During Pasche’s early life the family lived in Switzerland, but her parents sought an environment like the one fostered at Pathlight in the United States.

“One of the reasons why we moved back to the U.S. is because of the possibility of inclusion and schooling in a regular school,” Jean-Pierre said. “In Switzerland, it is not possible. There were practically no options for our daughter to go to regular school. It’s basically segregation.”

Pasche loves the programs at Pathlight, Jean-Pierre said. She has a lot of friends there and he praised the staff there as helpful, kind and understanding. The exhibit, he said, will be a chance to expose the public to some of the people who are serviced by Pathlight.

“The photos are very inspiring,” Jean-Pierre said. “The range of emotion is beautiful, and the range of activity is very interesting.”

A program at Pathlight, called Whole Selves, offers an educational curriculum for children and adults to develop skills for building and maintaining healthy relationships. Within the program, there is a men’s group that meets to discuss dating, masculinity, toxic masculinity, stereotypes and breaking stereotypes, according to a Whole Selves program assistant.

On a recent morning, Sciarra walked into a room with members of the men’s group, a framed portrait of the men’s group in hand, and the group members cheered at the sight of the photograph as if they had just won the Superbowl. Excitement and pride filled the room as the group members shared their admiration for the photograph.

“It’s front-page material if we were in a magazine,” said Mikey Acevedo, a member of the men’s group. He remembered the day as “sunny and hot” and that the group wasn’t exactly sure how to position themselves for the portrait, he said.

In the photograph, taken by Ellen Augarten, Acevedo is looking at the camera with a contemplative posture as the rest of the group is seen in various poses, some appearing in mid-conversation with a friend and others looking at the camera.

“Together we are one unit,” Acevedo said. “Together we are like a family; we are brothers.”

Aidan O’Donoghue, another men’s group member, said he couldn’t help but laugh when he looked at the photograph.

“I thought it was hilarious that I had my head back like that,” he said about the portrait, which captured him mid-laugh. “It made me laugh that I was laughing.”

Augarten had seen some of the early submissions for the Pathlight exhibit and she knew right away she wanted to be involved. Over the summer, she met with the men’s group in Hadley and she found a picnic table outside of Whole Children that had just the right mix of light and shade.

“The moment they chose (for the exhibit) is when everyone is doing their own thing, except for (Mikey) who is looking right at the camera,” she said. “People seem to be engaged even though they are not actually looking at the camera.”

Brian Melanson, an instructor for the group, has helped develop curriculum for Whole Selves. In the men’s group, he said they address topics such as establishing boundaries in relationships, talking about healthy relationships, dating, sex and sexual intimacy, emotions and self-esteem.

“It’s unusual that people get sex-ed in general,” he said. “And it’s especially (unusual) for people with intellectual disabilities to get anything.” Melanson also teaches in local schools in the area such as Northampton High, Amherst Regional High, Frontier Regional and Mohawk Trail Regional.

Another instructor in the men’s group, Eddy Hougen, leads a photography class at Milestones and has photographs as part of the “This Is Me” exhibit.

“So much of what we do here is community-based,” Hougen said. “Which means we want to learn out in the community, but for me, a ton of what we do here is about the community being exposed to us.”

Twenty-five years ago, Hogan said, people with intellectual disabilities would have been institutionalized once they were 18 or younger, and would be very rarely seen out in their communities and not typically engaging with other people in their community.

“Here we are now, trying to be at the forefront of subverting that entire paradigm so that we are out and about and being seen,” Hogan said. “All these photographers that may shoot bands, models, nature or for the newspaper all got a chance to experience us in our element. Some went to people’s houses, some came here (to Whole Children), but either way, it was an opportunity to have more exposure to us.”

Pathlight programs include Whole Children, an afterschool program and classes for children ranging from toddlers to teens; Autism Connections, which offers training, support groups, family activities and collaborations with local organizations, as well as services to families and people with autism; and Milestones, a program for young adults out of high school and those entering adulthood.

“This Is Me” is meant to showcase people serviced by the different Pathlight programs; some are young adults outside of where they live, others are studio shots of young people, one photograph is of an elder couple standing by a vintage car, another is of someone eating in their kitchen. The photographs vary in location, but they all have a distinct authentic quality that captures peoples’ character.

Representing the broadest range of voices possible is a goal of the Northampton Center for the Arts, said Kelly Silliman, the center’s program director.

“I hope the reception and exhibit brings people together that might not ever meet or cross paths,” Silverman said. “And people will see the way that art can bring people together, and specifically, can amplify voices that are not always heard.”

Recent North Star graduate Kim Chin-Gibbons, whose photographs appear in the exhibit, said she is looking forward to the opening reception. “I love how this project brings all sorts of people together — some rock star Valley photographers and people from the Pathlight organization.”

Asked for parting thoughts on the exhibit, members of the men’s group were looking forward to showing the community at large slices of their everyday lives.

The photographs are “impressive,” said Chris Seifert, a men’s group member. “I feel honored by the exhibit.”

The Pathlight exhibit reminded O’Donoghue of an exhibit he recently saw at MASS MoCA in North Adams, and to be in a similar one “makes me happy,” he said.

Pasche said she will enjoy having her photograph as part of the exhibit. “I like being famous,” she said.

The exhibit will move onto Greenfield at Greenfield Savings Bank’s office in January. Plans are also underway to bring the exhibit to Hampden and Berkshire counties in the future.

Luis Fieldman can be reached at lfieldman@gazettenet.com