People with severe disabilities are learning to express themselves through art, thanks to the passion of Tim Lefens, named a Robert Wood Johnson Foundation Community Health Leader in 1998.
The problem. People with severe physical disabilities often feel that the essence of who they are is trapped inside their bodies. And they are often infantilized, treated as if they have little to offer. How can people who cannot walk or talk and have limited use of their hands experience the joy of creating their own art?
Finding his passion in the Big Apple. From the time he was able to hold a paintbrush, Tim Lefens was making art. Recognizing his gift, his parents sometimes invited little Tim to draw a picture to entertain their friends at dinner parties.
When Lefens was in first grade, the family relocated from Michigan to Belle Mead, N.J.—a fortuitous move, Lefens says, because it was just a bus ride to the art museums of Manhattan. His favorite, the Museum of Modern Art, was right next to the office where his father worked as a civil engineer.
By the time he was in high school, Lefens wanted to do nothing else but draw and paint—much to the displeasure of the teachers whose classes he ignored. He poured over art books filled with the works of Manet, Cezanne and Picasso. “Their quest to push their paintings to the frontier of art read to me like a story of adventure,” he wrote in his book Flying Colors: The Story of a Remarkable Group of Artists and the Transcendent Power of Art. “In time, I pictured painting that would go even further; painting that would connect more directly with the flash of raw energy I experienced being alive.”
Pushing the limits of art. Lefens needed a guide into the realm of abstract art. He found one in a friend’s father —painter Roy Lichtenstein who chauffeured the boys to the beach in the summer and invited Lefens into his studio in Southampton, Long Island, N.Y.
Lefens went to art school in Utah, where the works of purely abstract painters like Jackson Pollock and Willem de Kooning introduced him to “a visual language I could use to go directly to the life I sensed inside,” Lefens writes in Flying Colors. He transferred to Virginia Commonwealth University in Richmond, which had an art program sympathetic to abstraction. After earning his bachelor’s degree in 1977, he trained at the Mason Gross School of the Arts in New Jersey.
The light is going out. By the early 1980s, Lefens work had been shown in New York art galleries and caught the attention of influential art critics. Lefens recalls this time as a swirl of loft parties in lower Manhattan, surfing Tres Palmas in Puerto Rico, and trips to arts venues in Italy.
Then in 1988, Lefens began noticing changes in his vision and soon heard the news no visual artist should hear. “You have retinitis pigmentosa,” the doctor told him. “You have two years, five at the outside, of usable vision left.”
Three consecutive specialists made wisecracks to the effect of, “Well, it’s a good thing you’re an abstract painter because you don’t need your eyes.”
“I vowed I would never put myself in the hands of an eye doctor who was not also an artist,” Lefens says.
He eventually found an ophthalmologist who was also a sculptor. In his office, Lefens showed him reproductions of his paintings. The doctor looked carefully at each image, looked up at Lefens and said, “I’d like you to come to the school where I am teaching. They’re starting an art program. I’d like you to show slides of your work to my students.”
“I saw something in their eyes.” The main campus of the Matheny Medical and Educational Center in Peapack, N.J., is home to 101 children and adults with medically complex developmental disabilities. Most have cerebral palsy, and some have spina bifida and a wide range of other uncommon, but devastating conditions, as well as vision and hearing deficits, seizure disorders, and cognitive disabilities.
Showing his art at Matheny was a turning point for Lefens. “I could see by looking in their eyes how much they were still there, 100 percent,” he says. “They were really intense, but they were being spoken to as if they were infants, and it was really upsetting to me.
“There is something wrong here,” he recalls thinking. “They are being mistaken for being idiots. What if they could use a different language? Maybe painting, which I believe in so much, could be their way out. But how can you paint if you can’t move?”
Lassoing the power of technology. Lefens’ first answer to that question was to secure a large canvas on the floor, slather paint on it and cover it with plastic. Then he invited those in motorized wheelchairs to drive across it, using the power and weight of the chair like a big paintbrush to leave a mark. “The paintings were awesome from day one,” Lefens says. “They were ‘in there,’ just as I suspected.”
But this method excluded those who did not have power wheelchairs, and even those who did eventually wanted more of a challenge. Lefens decided to experiment with light. He bought a target laser at a local gun store and attached it to an old welder’s helmet, with the plastic visor removed.
Wearing the device, students were able to indicate their choices of color, texture, size, and brush type and to trace where they wanted the paint to go. Lefens trained able-bodied trackers, studio assistants who applied the paint exactly where the artists pointed the light on the canvas. Lefens likens the process to an architect directing builders. “The person is really choosing and the result has meaning,” he says.
Soon his eight students were painting large abstracts expressing the raw emotion that had so long been trapped inside. “The paintings look like feeling, real feeling,” Lefens says. He could see the painters “cross the line from stasis—nothing is happening, they are getting cleaned up by staff, they are being fed, being wheeled on the bus—to being ‘the boss,’ and everything is their vision.”
Launching a new venture. Lefens’ and his students dreamed of an art opening in New York. As a step toward that goal, Lefens organized a show at the School of Visual Arts at Rutgers University, in New Brunswick, N.J., which drew art lovers and donors. Soon after, “CBS Evening News” featured the art program on an “Eye on America” segment.
The national attention was a public relations boon for the Matheny School, but when Lefens broached the idea of taking his technologies to people with disabilities around the country, the school’s president balked. A doctor friend took Lefens aside and said, “You could do this yourself.” Lefens replied, “I am a painter, not a business man. I’m terrified. It sounds right, but how can I do it?”
But he pressed forward with help from friends, setting up a nonprofit corporation called A.R.T., for Artistic Realization Technologies, in 1995. Roy Lichenstein sent the first $5,000, and then the second. Lefens hired an assistant, then bought a computer—“because all businesses have computers,” he says—and a program that enabled him to use it with his failing sight.
Then came that long-hoped-for gallery opening in New York, where the entire show of student paintings sold out. A seven-foot abstract called “A Bear,” painted by a man named J.R., sold to a Disney executive in California. “J.R.’s mother was told at his birth to let him go, to put him in the system, and not to follow up,” Lefens says. “He would be incapable of anything, period. He would just be a heartache … . That is a long way away from being incapable.”
Becoming an RWJF Community Health Leader. When Lefens was awarded the Community Health Leader grant in 1998, A.R.T. had little more than its breakthrough technology, a small studio in Princeton, N.J., a couple of office staff and some volunteer trackers. “We absolutely took off with the RWJF grant,” he says. “It was a game changer.”
With the grant, Lefens was able to reach out to numerous organizations that served people with profound disabilities—from large ones, like Easter Seals and United Cerebral Palsy, to public schools systems, to the small, private institutions that are tucked away around the country.
Being a Community Health Leader provided him much more than money, Lefens says. “They [Community Health Leader program staff] were heavy duty guides,” he says. “I could go to them and say, ‘I’m trying to do this. What do we do?’ It was a very active connection—two times a week talking to them for years.”
In the early 2000s, Lefens, at that point legally blind, used Window Eyes, a computer program for the visually impaired, to write Flying Colors, about his journey to create A.R.T. It was published by Beacon Press and named the best nonfiction book of 2002 by Reader’s Digest.
Looking ahead. Blessed with a restless mind, Lefens has created other technologies that enable people with disabilities to create sculptures, art photography, and music. But in a poor economy, most organizations can’t afford the systems, he says. His simple laser system for painting, largely unchanged since its creation, remains the core of A.R.T.’s model.
As of 2013, A.R.T. had 27 programs up and running in 11 states. Funders in addition to RWJF include Kessler Foundation, Christopher and Dana Reeve Foundation, the National Endowment for the Arts, and Princeton University.
A.R.T. has worked with children as young as three up through people in their 40s. Lefens would also like to reach elderly people and returning veterans with traumatic brain injuries and lost limbs, but he has yet not been able to find an opening into the Veterans Administration system.
“If they would let us in, we would bring our wagon and set up the studio, and work with some of these guys who’ve got a really bad deal,” Lefens says. “Our thing is not a pity party. It is complete self-control. It is empowering. It is not like ‘Oh, I’m going to hold your hand and you make a valentine.’ If you have a dark vision, you can make that happen in a painting.”
RWJF Perspective: RWJF recognized the first 10 Community Health Leaders in 1993. They are unsung and inspiring individuals who work in their communities—often among the most disenfranchised populations—to address some of the nation’s most intractable health care problems. The formal recognition of these Robert Wood Johnson Foundation Community Health Leaders and their programs often launches them to greater levels of influence and extends their reach to serve more vulnerable populations. For more information on the program see Program Results Report.
Under the RWJF Community Health Leaders award, each year RWJF has provided a $125,000 award to 10 individuals and their organizations ($105,000 supports a project at their organization and $20,000 goes directly to the leader for personal development). RWJF also connects the RWJF Community Health Leaders with each other so they can continue their work with the support and experience of their peers and previous award winners.
“Community Health Leaders are characterized by three specific traits—they are courageous, they are creative, and they are committed,” says National Program Director Janice Ford Griffin. “The Foundation recognizes the tremendous resource of experience among the leaders and we look forward to mining that resource as we consider future initiatives.”
“Through the Robert Wood Johnson Foundation Community Health Leaders award, we at the Foundation have the opportunity to recognize innovative and courageous local leaders behind ground-breaking efforts in communities across the United States,” said Sallie George, MPH, program officer at RWJF. “These individuals remind us that one person can have a powerful impact on health and health care within their communities.”
The last round of leaders was chosen in the fall of 2012.
An artist who began to lose his sight decided that he wanted to help disabled people find a way to still create art. Instead of treating them as helpless and incompetent, he gave them back the power to make decisions and express themselves in a way they could not do before. He created interesting systems, such as large floor paintings and a laser to display their decisions, that allowed very disabled people the control to make something amazing. The art that came out of this is really inspiring, and it reinforces the idea that disabled people must be viewed as equal to everyone else. They have so much inside that they have not been given an avenue to express. We as designers must provide that for them, so that we can learn even more from them.