Really Caring: Why a comprehensive healthcare system includes the arts

This story appeared in High Performance #74, Winter 1996.

You can gauge the humanity of a society by the way it treats its young and old, to paraphrase a familiar quote from Dostoyevsky. Holding the U.S. healthcare system to this yardstick, it's clear we're not very humane. For example, the healthcare system for an aging population in New York City provides senior centers for well elders, adult day healthcare centers for those still mobile, nursing homes for the frail, hospital and hospices for the sick and dying. But most of these institutions treat aging as a disease rather than a natural process. They emphasize a medical rather than a social approach, often reducing people to their medical "condition." Diseases are treated, not human beings. A system that really cares for people should sustain their well-being in their communities, and provide a continuum of care from birth to death. This social model uses each person's individual strengths and integrates him or her into a support system that provides for emotional as well as physical needs. Arts programs can do this by tapping into all aspects of a person's well-being. Thus, a comprehensive healthcare system includes the arts.

To some extent, creative arts therapies, arts programs and arts organizations are already part of the picture in the current healthcare system. But there is room for much more as society stands at the crossroads, hopefully moving toward a more holistic understanding of health care.

How can arts programs contribute to healthcare and well-being? As director of Elders Share the Arts (ESTA), a community-based arts organization primarily serving elders and their communities in and out of institutions, I am in a unique position to observe and to think about healthcare needs across the life span. ESTA designs and conducts arts programs that address some of the needs of old and young in their communities through what we call the Living History arts-movement, theater, music, writing and the visual arts. ESTA teaching artists work in senior centers, nursing homes, hospitals and schools. I know from this experience that the arts are an essential component of individual well-being and community empowerment.

When considering the role of the arts in healthcare, we must first take into account the political climate we live in. Those of us who work in underserved neighborhoods clearly see and feel the debilitating effects of the recent federal, state and city cuts to healthcare, education and welfare in New York City. These mean-spirited cuts affect all those who take part in our programs: participants, families and friends, as well as administrators and staff in the institutions that provide social and educational opportunities. But I know the arts can reconnect people, even in this bare-bones economy.

Second, we must realize that American culture is a youth culture that prizes mobility, invention and technology. What is the latest thing? Do you have it? Where can I get it? In such a culture elders have little value. There is small regard for wisdom and historical connection, and almost no recognition that one generation builds on the achievements of those before it.

Yet, a significant demographic transformation is in process-America is aging. By the year 2030, 28 percent of the population will be over 60, and the number of those over 85 will triple. There will be nearly twice as many older adults in 2030 (70 million) as there are today. Americans are living longer lives than ever before. This population revolution presents an extraordinary opportunity and challenge for arts organizations, artists and the healthcare system.

The Arts Connection

As I watch people move through our arts programs, learning new skills, discovering new parts of themselves, finding creative ways of expressing their perceptions, I have no doubt about it-art heals. The arts provide preventative and integrative approaches to healthcare, building self-esteem and a sense of identity and belonging, connecting people and celebrating life. All these things are part of an individual's healing process.

Group arts activities bring people together on common ground, and can bring healing to a community. Time and again in ESTA's programs, I have seen people learn to observe, explore and create together. We lead them to explore commonalities and differences, essential building blocks of respect, tolerance, appreciation and enjoyment of each other.

When we connect ages and cultures, it's obvious the arts are a tool for social change, in and out of institutions. Incorporate community-building arts projects into the healthcare system and they can't help but change the nature of relationships in surprising, ongoing ways. Our collaborations—murals, plays, music, dance and writing projects—often bring unlikely partners to the table. Once they are working creatively together, they give themselves permission to stretch their imaginations toward critical thinking, decision-making, problem-solving.

ESTA's cross-generational festivals are a real celebration of cultural diversity, bringing our community performing-arts groups together to create ceremonies that recognize the special place of each generation. The festival is a place where they can come together to see, discuss, share, question and appreciate each other. You can literally see the connections being made as exploration and creativity deepen caring community relationships.

Inside institutions, arts projects can help to stabilize communities experiencing the tension around difference that results in disrespect, violence and burn-out. Arts programs can create positive, invigorating, life-giving and life-sustaining activities that, again, make those human connections. In a caring, connected community, people are more likely to stay healthy because they look out for each other.

The ESTA Models

ESTA has two very useful programs called Legacy Works that help to close the gap in the continuum of healthcare by identifying community needs. One is an intergenerational homebound program in Manhattan's East Harlem (El Barrio), the other is a program at a long-term care facility, St. Alban's V.A. Hospital in Queens.

The problems that confront each community are different. The East Harlem neighborhood lacks resources and connections to coordinate the healthcare system. At St. Alban's everyone is under one roof, but the medical hierarchy determines the quality of life, and peoples are defined by their illness. In both cases, people want more control over their lives and are looking for supportive human relationships.

To give you an overview of the full scope of our arts activities, ESTA is the only comprehensive resource center on arts for the aging in New York City and, as far as we can determine, in the nation. We believe the vital key to improving the scope and quality of creative arts programs for elders and their communities is the linking of generations and cultures. One of our most creative, therapeutic and empowering tools for working with elders and intergenerational groups has been the life review process.

In this process, ESTA's staff of professional artists conducts workshops in storytelling and interviewing skills, enabling participants to integrate past experiences into their present lives. They then transform these experiences into an art form: theater, dance, music, writing or visual art.

We conduct 20 such Living History programs in New York City, directly serving about 1,000 older adults and young people each year. Each program year culminates in a series of Living History festivals that celebrate their wisdom, vitality and cultural legacy by presenting their creative work at community centers, senior centers, schools, museums, nursing homes and hospitals.

These activities have sparked many senior arts coalitions, like the Pearls of Wisdom, a group of older storytellers, and a traveling exhibit of work by older visual artists called "Discoveries." We also train artists, educators and healthcare professionals to create ESTA model programs, reaching more than 15,000 people each year.

Legacy Works, our visual arts program, aims at creating artworks by integrating the stories from an elder's life. With our help, older people can transform their memories into Life Books, collages and tape stories to pass on to relative and friends. If intergenerational, this activity can also bring communities together by creating lasting personal relationships between young and old.

Connecting in El Barrio

ESTA is presently creating an intergenerational arts partnership in East Harlem, also know as El Barrio. The neighborhood, distinguished by many large New York City Housing Authority projects for low-income families, suffers from violence, crime and lack of adequate protection, healthcare, education and support for family life. Each housing project has a senior center and community center as part of its complex.

Union Settlement House, a multi-service agency, offers a broad range of programs for the Latino and African-American people living in this underserved community. Union Settlement runs a Senior Services Program under the auspices of the New York City Department for the Aging. This program includes senior centers and services to the homebound elderly. Homebound receive meals-on-wheels, friendly visiting and shopping assistance. Staff is overworked and stretched to the limit, but they try their best to help their community. Through a grant, ESTA offers an intergenerational arts partnership for homebound elders through the Senior Services and Youth program of the Union Settlement House.

Many frail elders are homebound. Family and friends die or move away. Seniors feel isolated and lonely and some long to return to their homeland. Their support networks are limited. Few people know who is living behind their locked door. ESTA links those elders with young people through sharing their history, culture, stories and customs, training young people to respect and take interest in the elders. We have seen such wonderful results. Instead of waiting to die, elders become useful and needed in their community. Young people learn about their future, develop role models and receive support for their lives.

At Union Settlement, an ESTA artist first trains the teenagers to interview the elders on their life experiences, then trains them in the art of collage. Eight teens are going in pairs to visit a different elder on each of four days a week for 30 weeks. Each meeting ranges from one to two hours. When the interviewing is finished, they collect memorabilia from the elders, then the teenagers and each elder together create either a Life Book or a collage. The project culminates in an opening and exhibit at the Union Settlement gallery to which all participants are brought.

I trained a group to do an interview with the theme of a family tree. Here are my notes from my journal for October 3, 1996.

Today was the first training with the teenagers selected for the intergenerational program at Union Settlement. When I arrived at the East Senior Center one by one teenagers came into the program room. Each had volunteered for community service, but were unsure of what they were getting into. There were eight-three boys and five girls. We soon discovered they were from the Dominican Republic, Puerto Rico, Jamaica and Colombia.

The exercise for this training was to draw a family tree. This activity focuses on expanding the participants' awareness of their own family history and the family history of other group members. It is an opportunity to recognize and value the cultural backgrounds of the group members and their unique family histories as well as to elicit common experiences about growing up.

We first discussed what we mean by family-blood relationships and those people closest to us who care for us. Then each participant drew the father's side and the mother's side and created generational lines in an actual drawing of a tree with branches, including aunts, uncles, cousins and siblings. I explained that they could be creative and put people, pets and favorite things into the picture where they thought they belonged.

Eduardo said his father was not around and he didn't want to put him in the tree. I reminded him to be creative and he could place him anywhere he wanted to in the picture. Eduardo put his father in a box under the tree. He showed his tree to the others. They laughed and told Eduardo that their fathers were not around either This began a discussion about where their fathers were. A shy boy, John, explained that his father had moved back to Colombia. We decided to interview each other to learn more about our fathers. A girl agreed to play his father John could not believe that she understood his situation and "got" that his father was looking for a woman and looking for work.

The teenagers spoke frankly to each other about wishing that their fathers were there. At the end of the session, I asked each participant to give a highlight. One boy said he learned he was not alone. The other said he would try to be a different kind of father

Everyone thought this was a great group; they had surprised themselves. They liked their trees and hung them up. They eagerly anticipated bringing their trees to the first interviews with their homebound elders.

Now, in the third month of the program, the teenagers are deepening their relationships with the homebound elders. Rosa and Eduardo visit Marie, who is 87, is frail and has debilitating arthritis. First Rosa discovered that, like herself, Marie is part Puerto Rican and part African American. She also discovered that they both wish to get away.

Marie couldn't easily draw the details in the tree, so she asked Rosa and Eduardo to help her. Together they drew deep umber thick roots and branches covered with forest green leaves and scarlet birds flying away in the blue sky. As they filled in Marie's family tree, Rosa and Marie shared wishes to move to a warmer and more welcoming place.

The ESTA project artist reports that Rosa confides in Marie, anticipates her coming, and has become her surrogate grandmother. They are busily collecting stories, photos and sayings for collage. Marie tells Rosa to trust herself. She learned to trust herself from her grandmother in Puerto Rico.

In a culture tom apart by change, Legacy Works programs are attempting to build new relationships, inventing new structures to create community across the cultural divide and across the age gap.

Saving Memories at St. Albans

Once elders can no longer live independently at home, they will move into a nursing home, a long-term care facility or a hospital. Often elders die before the move because they don't want to leave a familiar place and prefer to refuse to care for themselves, such as not eating, in order to die at home. Sometimes there's no one around when they become ill.

Once moved to a nursing home environment, the elder faces a huge adjustment. In a medical setting, staff and patients alike suffer from loss of personal identity. Roles are limited and hierarchical. Most staff are not prepared to cope, with the elders' loss of role and personhood. There is a need to create a viable community, a social approach within a medical setting.

This is a need addressed by our series of life-review arts programs at St. Alban's VA Extended Care Center, a 425-bed facility in Queens. They include a life-review arts program on the wards through the recreational therapy department, a multimedia program in the Adult Day Health Care unit, and a creative drama program in the behavior management unit, all culminating in exhibition and presentations. These programs are conducted by ESTA artists on a weekly basis from September through June.

The participants have a wide range of physical and mental impairments. Physical impairments include multiple sclerosis, Parkinson's disease, organic brain syndrome, stroke and cancer. Mental impairments range from depression and confusion to paranoid schizophrenia. Almost all participants are wheelchair-bound or bedridden.

In the last stage of life, an individual's experiences are often invisible and lost to the family or caregivers. Who is the stroke victim or the dementia patient? Often the fascinating history of a generation locked in a frail body is ready to be released with the support of a caring, listening, skilled artist.

For those residents too frail to join a group, ESTA developed a visual-arts program to meet individual needs. Legacy Works transforms the life experiences into vibrant, moving works of art to be passed on to family, friends or the caregivers in the institution. In a creative collaboration between the elder, the caregiver (nurse's aide, recreation therapist, volunteer, family member) and the artist, the art work becomes an essential way to communicate and pass on the personal and cultural history of the elder.

The memories of the elder and the caregiver are transformed into a collage, photo essay or Life Book. The finished work may include a portrait of the elder drawn by the artist, as well as images and works chosen by the elder that capture their values, beliefs and experiences. ESTA artists work directly with the elders or caregivers, and can train and supervise staff and volunteers in the process of transforming memories into art. The artwork can be hung in the resident's room or at the resident's request may be given to family or the institution itself.

The ESTA artist meets with each elder in his or her room once a week for one hour over a period of six to eight weeks. The first session is devoted to taking the life histories or the resident. The second session is spent going through photographs or memorabilia or through magazines for visual images that highlight important parts of their life. For the remainder of the sessions, time is spent drawing, talking and gathering sayings or quotes, selecting photos and pictures and creating the artwork. During the final session, many artistic decisions are made regarding the aspects of the resident's life highlighted in the completed piece. When all the pieces are finished, there is a formal exhibition and presentation of the art work. At the opening, staff, family and fellow residents are invited. Each work is photographed for the family or caregivers.

This past year the exhibition sites were the main lobby and the canteen at the St. Alban's V.A. The exhibition was on view for two-and-a-half months at both hospitals. In that time thousands of people who came through the hospital lobbies or ate in the canteens viewed the work. The response was extraordinary, and in many cases the residents became celebrities as their pieces were seen by people who knew them or wanted to know them as a result of seeing their legacy portraits.

The process itself makes for some poignant memories. One elderly Catholic man was worried about his philandering youth and plagued by thoughts of Hell. Again and again he looked at his collage unfolding and wondered how to save himself from Purgatory. Then he placed figures of golden angels in the comers of the piece. The angels, his creative invention, have given him a way of protecting himself from his fears. He cherishes his collage, which hangs above his bed. He feels he can die easier, knowing that angels are watching over him.

Another resident with dementia chose a picture of a sunrise to be the center piece of his collage. He told the artist that the most important thing about life is to see the light coming up in the morning. In his small, concrete room, the sun now rises each morning when he wakes.

Legacy Works' teams of caregiver, patient, staff and artist have been partners in making the hospital a more humane place to live and work. Unfortunately, we have just received the sad news that the hospital is scheduled for drastic change due to severe budget cuts. Residents will fall into the imperfect safety net of the current healthcare system

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At a time when instability, loss and isolation threaten the quality of life, older adults need meaningful activities to help them pass on values and history that can connect generations. Art making can make a great difference. Arts programs like Legacy Works make partnerships both in the community and in the institution that help to fundamentally change the nature of human relationships. Through programs like these, many thousands of unheard Americans, old and young, have found their voices, expressing themselves in a resonant affirmation of their life stories and cultural heritage.

Susan Perlstein is the founding director of Elders Share the Arts.

This story originally appeared in High Performance #74, Winter 1996

Original CAN/API publication: December 1999