through its innovative ARTS UP program, which supports community-artist teams in a collaborative process of exploration and creation.
Extending the parameters of contemporary public art practice, ARTS UP (Artist Residencies Transforming Urban Places) paired artists and communities to develop arts-based collaborations around shared goals. ARTS UP was an act of faith in the creative process and reinforced the notion that art could be at once community-based, challenging, and articulate. The program deployed the potential of arts in community change and development, grounded in the principles of cultural democracy, selfdetermination, collaborative cultural production, and social justice. ARTS UP sought to develop public infrastructure in support of arts-based civic dialogue, sustaining the City of Seattle’s public art mission "to actively engage artists in the civic dialogue" and its goal of strong, healthy communities.
The ARTS UP model supposes a role for the artist that embraces his or her potential as a critical thinker and agent of change. The artistic results may cross disciplinary boundaries, so that their character as “art” may not even be readily apparent. Yet the artist’s creative thinking, focus, and aesthetic are essential to such projects. Across the country, artists are engaging communities in this sort of generative process, compelled by the belief that art plays a vital role in civic life: that it can stimulate fresh ideas about old problems, give voice to citizens, and create a forum for group expression and action.
Becoming Citizens evidences the incredible power of this marriage between artistic practice and social agenda. As a work of art, Becoming Citizens combines a seductive elegance with the artist’s critical observation and provocative juxtapositions. Schwartzenberg’s identity as first an artist is readily apparent in both the book’s visual articulation and its unlikely combination of materials and ideas. She brilliantly employs the power of the anecdote placed within the broad sweep of history, giving a compelling yet unsentimental face to the players in this important phase of the disability rights movement.
When employed to relate the story of the individual, art is a great leveler, communicating lived experience with a resonance and power that makes it our own. The testimonies and mementos juxtaposed in Becoming Citizens offer an evocative window into the hearts of these Seattle families, letting us walk in their shoes in a way that mere description could not. By excavating the evidence of this particular moment in time, Schwartzenberg has added it to the historical record in a way that invites participation from a broader public. The shared experience of storytelling incites us to lend our voices to the continuing struggle for social change.
Yet the work reaches out beyond art to many other disciplines as well, inviting a conversation with the fields of history, anthropology, medicine, and disability studies, to name a few. The exhaustive research engaged in by Schwartzenberg, the rigor she brought to her field interviews, and the incisive analysis that has led to this book can leave no doubt as to the relevance of her voice in these more concrete disciplines.
We are at a critical time in the development of community-based art practice in this country, a time when the development of policies, infrastructure, and critical dialogue can coalesce the field, or their continued absence can evince its demise. Projects like this one contribute so much to the larger body of community-based art, greatly expanding our definition of the artist and opening windows of opportunity for artistic engagement with broader issues. The Office of Arts & Cultural Affairs has been proud to be part of that process of expansion through Becoming Citizens.
—Lisa Richmond, Seattle Office of Arts & Cultural Affairs
Introduction
“If you talk to someone, suddenly they might say, “Oh I have a niece, or a brother, or cousin, or I have a friend. Everyone has this experience but they don’t want to talk about it.” —Delia Cano
Beginnings
My first meeting with the Seattle Family Network (SFN) was a potluck. We went around the table and each member of the SFN described their reasons for wanting to tell the stories of the “senior families” in their community. These were parents who had raised children with developmental disabilities during the post World War II era. “We have stories—personal experiences that people don’t know about—stories that at one time were kept secret, but now people want to talk.” The conversation was bewildering at first. Each person’s reason for wanting to tell these stories of the previous generation, and their own personal story were intertwined. Every member of the group at the table was a caregiver for a family member with a significant cognitive disability. (1) I learned that every family who has a child and/or an adult with a developmental disability struggles daily with complex issues. They must work to secure a variety of social services, financial assistance, and appropriate medical care. They advocate for meaningful educational opportunities, recreation, jobs, and housing. They are subject to whims in the economy and privately tremble when new public officials are elected, not to mention the variety of emotional and personal experiences they must continuously work through. Yet they assured me their lives were easy compared to the generation before.
The World War II generation are often called the pioneering parent advocates. Invisible to most of us, they rode a wave of social and human rights activism during the postwar decades, activism that transformed life in America. A quiet undercurrent of the civil rights movement, their first act was to challenge their doctors and pediatricians by saying, “No, I will not institutionalize my child.” Nor would they abandon their children to the jurisdiction of the medical/professional establishment.
When I was first offered the project, I wasn’t sure it was right for me. I’m interested in stories about the unrecognized—how people struggle to realize a purposeful existence in the face of considerable hardship. But disability, it seemed, was a painful story and with no end. It also felt as if I was being hurled into the center of a drama, where the emotions were so high I feared I could never make sense of it. Yet the more I listened, the more the experiences began to sound familiar. Six months earlier my mother, who was 82 and diabetic, had her second stroke. She had short–and long–term memory impairment, problems with attention and concentrating. She was bewildered and angry. We were told she could no longer live alone and were advised to place her in a nursing home or an assisted living facility. Though her story is about senior–care, the experiences of my brother and I caring for her until her death in 2004 paralleled the stories in this project. We kept her in her own home but agonized over finding the right caregivers. We began a search for doctors, medications, and therapies. We pored over legal documents about trusts, wills, and the multiple powers of attorney one needs. We entered the labyrinth of insurance policies, Medicare, and the modern health care system. We traveled regularly to the emergency room and struggled with personal care issues we were untrained for. Every time we took her out shopping or to a restaurant, I was surprised that even though the Americans with Disabilities Act was passed in 1990 there were few public places that felt comfortable for her to be in. The world was too big, too busy, and there was almost nowhere she could walk comfortably. My personal world, as I tried to learn how to be a caregiver for my own family member, began to mirror the stories in this project.
While my family experience would last but a few years, the stories in Becoming Citizens were many decades long and are still unfolding. As I spent that first afternoon with the SFN, listening and thinking, the scope of the project began to emerge. This was a story of mothers and fathers optimistically starting new lives and families in a postwar economy with economic opportunities they couldn’t have imagined a decade before. Then a child was born whose very existence, they were told, would disrupt their chance for a better life. Unwilling and unable to accept the idea that the child should be given up—or that they should give up on this child—they pushed forward. The conversation that day went from anger to tears over funny and sometimes outrageous stories about home life and moms as bake-sale activists. Mothers
