Activities for people with disabilities aren't often customized to their interests. That's where this Wisconsin group comes in.
Stefanie Primm's brother, Jeremy Gilomen, has autism. Growing up, Primm's family often relied on programs for people with disabilities to keep her brother engaged during the day. The staff in those programs taught life skills to people with disabilities and hosted activities like field trips, movie nights or craft or game sessions.
While the program staff were kind and attentive and the programs were meant to be fun, the planned activities were usually generalized without much attention given to what each individual was interested in.
As Primm describes it, "a lot of folks with disabilities live in this service land where you get shuffled from one thing to the next."
"Oftentimes, for a family, if their child isn't in an activity, that limits the caregiver's ability to work, and we've known a lot of families who had to leave their jobs when their kids left school," said Primm. "Having those services is very essential, but we also have to recognize that being in places that are just focused on disabilities isn't living a complete life."
Building connections among families with disabilities
In 2007, Primm, some of her family members and other families of people with disabilities got together to talk about what they needed. That's when LOV Inc. was born. In many ways, Primm said the organization was first a support group for families who were trying to find a path forward and brainstorm about how service organizations could work for them.
"My family was very isolated from other folks, and my brother was very isolated as a young adult," said Primm. "Forming connections was really powerful for me and for my family and others who founded the organization. It was an opportunity to share experiences and to build some power and take collective action together."
The organization, which is based in Madison, now offers a number of services to families and people with disabilities — like workshops that provide resources so young adults with disabilities can live on their own, themed social events and peer social groups.
Primm said LOV Inc. is unique in that projects and programs are co-designed by people with disabilities and their families — and then adjusted when necessary. In that vein, she remembers that a year into the organization's life, conversations were happening around the possibility of revamping social events.
They had already been trending away from the "shuffle from activity to activity" model by doing social activities that allowed people to really get to know each other, to have friends rather than just go on an outing once a month. But something was still missing.
"Folks were saying, 'I wish I could find someone who's interested in computers or writing like I am, and that person doesn't have to be someone with a disability,'" said Primm. "They were clear that part of having a complete, full life is having friends who share interests, regardless of whether they have disabilities or not."
Building bridges based on interests
That's how the idea for the Bridge Builder Project came about, and Primm's brother was one of the first to try out the new program. She explained that Gilomen had always loved computers and knew of a computer club he wanted to join, but that he didn't feel comfortable approaching the group by himself.
"His social experiences in high school had been pretty rotten as he was misunderstood and bullied," said Primm. "He was nervous to go to a place with people he didn't know, but it didn't make sense for me, as his sister and as someone who doesn't care about computers, to go with him. That would be even weirder."
The families with LOV Inc. talked about the situation and got funding together to hire a person whose job it was to help "build bridges" for people like Gilomen.
"They went with my brother to the computer club the first couple times to make sure he was safe and comfortable," said Primm. "He's still in that computer club to that day. He's on the board of directors and helps with organizing the meetings. It's one of the important pillars of his social life."
Another early adopter of the Bridge Builder project told staff at LOV Inc. he was interested in woodworking. So a bridge builder introduced him to a local woodworker he knew. 13 years later, the pair build Little Free Libraries together and even reached out to each other virtually to keep their friendship going during the pandemic when they couldn't get together in person.
"He has a cognitive disability, and the way he shows people his love is by building things for them, a toolbox for his dad, so many things for his mom," said Primm. "Having that years-long friendship with a fellow woodworker gives him the opportunity to explore his passions and not just live the most basic life. That's something that opens up the world."
Expanding the program
Within the past year, the Bridge Builder project officially expanded from Madison to the greater Milwaukee area. Zach Lillo — Milwaukee's bridge builder — said there are five staff at the moment, each of whom work with 13 to 14 members.
Lillo said his first step as a bridge builder is typically to meet with a new client a few times — to get to know them, to build trust and to find out what interests they have. Then the bridge builder will research groups in the community for the client to join, and will make the initial contact with the group.
"The next phase is designed with the member in mind," said Lillo. "For some members, I never have to go to the meetings with them; they just need an introduction to the group. The usual range is I go with the member a few times and then slowly transition out. Then maybe just a few times, I'll check in with the group leader to see how my member did when I wasn't there. It's a slow fadeout."
Lillo has been working with one of his clients, Philip Temme, for the past three or four years; Temme is involved in a writing group and book club that Lillo helped find for him.
"Before Bridge Builder, it was harder for me to find groups because it can be overwhelming being a new person and everything," said Temme. "And the way Zach attended the groups made me feel more comfortable because no one else in the group had to know we were together, but I knew he was there for me."
Building inclusive environments
Primm said most groups approached by Bridge Builder are welcoming and that their main concern is to ensure the client shares their same interests.
"For my brother, the big question the group had was does he understand how to talk about computers," said Primm. "And the answer was, yes, he's been looking his whole life for a group of people who wants to talk about computers as much as he does."
Primm said the Bridge Builder project isn't just helpful for LOV Inc's clients. When people with disabilities are welcomed into spaces that are meant for the whole community, people without disabilities learn how to be more inclusive. And both groups learn how to adjust their behavior so they can meet each other in the middle as they socialize.
"Most folks recognize the community is better when there's a fully diverse group, and disability inclusion is a big part of that," said Primm. "Yes, we may have to slow down sometimes for folks, but that's good for all of us."
Contact Amy Schwabe at (262) 875-9488 or amy.schwabe@jrn.com. Follow her on Twitter at @WisFamilyJS, Instagram at @wisfamilyjs or Facebook at WisconsinFamily.
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This article originally appeared on Milwaukee Journal Sentinel: LOV Inc Bridge Builders program helps people with disabilities
