From October 2018-March 2019, 21 diverse organizations participated in the First Wave pilot of the OF/BY/FOR ALL Change Network. Starting today, we’re sharing stories from their journeys to become of, by, and for the communities that matter most to them. These stories were written by Titania Veda in partnership with the First Wave teams.
For Susan Shifrin and her organization, ARTZ Philadelphia, change began with a single question:
“How could you expect us to feel welcome if your programs are all in English?”
The question was posed by a community member named Ruby during a talk Susan gave to a gathering of mostly Spanish-speaking seniors. It was a turning point for ARTZ Philadelphia.
“Ruby stood up and basically said how can you be so misguided? That caused the shift,” said Susan. “She is now in our advisory group and we feel we’re honoring that question. I love that she’s part of this advisory group’s heart and soul.”
Susan started ARTZ Philadelphia to empower people with dementia to take more control over their lives and destiny. ARTZ Philadelphia does this through art-based programming that encourages creative self-expression. Empowering people with dementia to choose their own preferred way to spend time and to make their voices heard is rare in the sector, as Susan first experienced when her mother was diagnosed in 2003.
“In the hierarchy of underserved communities, the people who always tend to be last for resources, programs and respect are people living with dementia,” said Susan, ARTZ Philadelphia’s founder and executive director.
Inclusivity is core to ARTZ Philadelphia’s work with people with dementia. But when the organization started to enter new cultural communities, Susan and her colleagues had to confront the limits of their inclusivity—and to push beyond them.
As part of OF/BY/FOR ALL, ARTZ Philadelphia is deepening connections in two neighborhoods: Hunting Park, which is majority Latinx, and Germantown-Logan-Olney -West Oak Lane in Northwest Philadelphia, which is majority African-American. The goal is to involve people from these communities who are living with dementia, loving someone with dementia, or caring about the issues around living with dementia in creating programs from the ground up specifically of, by, and for these communities.
Celia Morrison, ARTZ Philadelphia’s outreach and volunteer coordinator, initially doubted how the organization could help.
“I know why Hunting Park is important. But why US in Hunting Park? We come with so many barriers and have to do so much work to remove them. We have no bilingual person on staff. We have time but we’re missing the experience of having grown up in Philly,” said Celia. "It took me a long time to see the value in being just people who try. We were committed to being community-specific and building a program with a community-driven process. We had a little funding from grants to that end. Our existing ARTZ programs were built to be person-centered, so we've been that way all along. It meant we were focused in the right direction.”
The OF/BY/FOR ALL Change Network helped ARTZ Philadelphia leap forward in two ways.
1. Building teams that are representative OF the community
ARTZ Philadelphia's goal is to shift the power of program creation to their community members. But with a staff team of two, they don’t have capacity to transform their team through traditional hires. They started out by seeking out community members to join project advisory groups. Next, they engaged community liaisons who are part of the community. Now, they have an advisory group and a community liaison for each project.
Madelyne Groves joined ARTZ Philadelphia as a community liaison for the Hunting Park project in 2018. She had been a home care nurse for 9 years and has a mother who suffers from partial memory loss.
“Growing up in a Hispanic family and neighborhood, I wanted to be the voice for people who can't express themselves,” said Madelyne, who is bilingual and a resident of Hunting Park.
“It makes a difference because I’m being a bridge for the community. People feel I’m able to understand where they’re coming from because I'm from the neighborhood."
For Toya (who requested her full name be withheld) of West Oak Lane, ARTZ Philadelphia was an answer to her prayers. She joined the Northwest Philadelphia project as their community liaison in January 2019. Her mother suffers from dementia and it’s been hard for Toya to connect with her.
“I was praying that I'd find a connection with my mother again. I was feeling very guilty because I couldn't watch my mom like that,” said Toya. “When I found ARTZ Philadelphia, it made me realize it's ok to feel that way. And as a liaison, it allows me to share the fact that it's ok if you cannot be with your mom.”
Both liaisons see the benefits of being part of ARTZ Philadelphia in very different ways. Madelyne sees how art has the power to make people feel included and the positive impact it’s had on her community.
“For our area, sometimes people are afraid to step out of their comfort zone. With art, people can see there’s so much more to the world out there than their immediate surroundings. We recently took a trip to the Woodmere Art Museum and people were so amazed. It was like a whole new world when they saw the paintings,” said Madelyne.
For Toya, she found a community of support in the few short weeks since she started as a liaison. It helped her recognize she’s not alone in her struggles.
“I found a community and I can help somebody else with the whole process,” said Toya. “I found there's life after dementia, with dementia, that people with dementia count. And my mom's voice is still in there.”
2. Challenging Their Own Views
In the OF/BY/FOR ALL Change Network, each organization takes on new ways of working—recipes to become more of, by, and for community--to help them engage with their communities of interest and reach their goals.
Celia's light-bulb moment happened when she was doing an OF/BY/FOR ALL task to conduct informal interviews out in Northwest Philadelphia.
“I went into this library in Logan and I was white knuckled, gripping these metallic purple ARTZ pens. It was my first time there and I was about to interrupt people browsing the bookshelves and get them to talk with me. I had no ground to stand on and was very aware of that. I realized I should have made myself a familiar face in the places where I wanted to have these conversations. That I needed to talk to Toya about changing those questions to better engage people in the Northwest Philadelphia area,” said Celia.
“Through this task, I realized that OF/BY/FOR ALL is an amazing scaffold. They expect you to bring your own colors and flavors. We should take initiative in changing tasks to fit our community of interest, to make the tasks ours.”
In Susan’s case, joining the Change Network helped her become more sensitive to unspoken power structures and how they’re perceived by the community--even in activities as simple as designing a marketing flyer.
For example, when her team created a bilingual flyer, they initially placed English on the left and Spanish on the right. Susan noticed the majority of people reading the flyer were Spanish-speakers—and people read left to right. She realized they were still privileging the English speakers by placing the languages that way.
In another case, when designing a flyer for Northwest Philly outreach, the team initially featured photographs of their staff. Upon recommendation from Toya, their Northwest Philadelphia Community Liaison, they redesigned the flyer to solely feature images of participants. The flyer went from being organization-focused to community-focused.
“We now look at everything through those OF/BY/FOR ALL lenses. When we fly flags that are all about us, we send messages we’re not intending to send. An organization like ours is wholly dependent on trust. We won’t survive without that. We need to fly the flags of our communities,” said Susan.