My grandmother, Judith Druck, was the inspiration for the work I have been engaged in for the past twenty-five years. Grandma, who had Retinitis Pigmentosa (RP), was a strong presence with an incredible “get-up-and-go” spirit, a mentor to her grandchildren and a profound motivational force to me and the people with disabilities with whom she interacted later in her life. Together we worked to change “the bucket list” of what people with disabilities could “try out” in their lifetimes.
Grandma and I were always close, and when I was a child, I never knew she had vision problems. In fact, it wasn’t until she married my grandfather that she understood her vision was not the same as that of other people. One of the first symptoms of RP is night blindness but, as a girl, she simply assumed that nobody could see at night—how could anybody see in the dark? And it wasn’t until my grandfather died, when I was in high school, that all of the family came to realize the extent of Grandma’s vision loss. After his death, we came to understand just how much my grandfather had been quietly assisting Grandma. In order to continue living independently, Grandma needed rehabilitation training. Grandma went to an independent living center; she spent her weekdays there, and we would see her on the weekends.
I remember sitting at the dinner table one Friday night, listening to her frustrations with the independent living center’s program. The school was teaching her to cook and perform other tasks of daily living, and yet she wanted not just to learn to live life in a “basic” way. She wanted to live life fully, as an equal member of society. For instance, she wanted to know how to label her clothes so she could match them while dressing herself. Grandma lived life with flair. She had a passion for fashion—as a teenager she had designed her own clothing (which her sister used to borrow to wear on dates), and in her twenties she had been a personal shopper at Bloomingdale’s—a very stylish job for a woman to have back then. She had an extraordinary talent for drawing and even won a scholarship to art school. When she married and became a mother, she gave up drawing, but continued to dress with great elegance. This was a part of her essence, and while she lost her sight, she did not lose sight of her unique talents and enjoyments.
Another frustration for Grandma was that she wanted to learn Braille, but the teachers at the independent living center thought she was too old to acquire this skill. So Grandma found the Hadley School for the Blind, a correspondence school through which she was able to take courses and learn the language. For much of her life, she read voluminous books in Braille and she was able to label her clothing—including accessories and stockings in zip-lock bags—in Braille so she could continue to dress in the elegant style that was to her second nature. In fact, Grandma lived into her nineties, and never lost her love of fashion. In her final years, she was very close to her caregiver, who was also a friend with a great sense of style. They shopped together at Brooks Brothers until the very last month of her life.
In that time after my grandfather’s death, sitting at the dinner table with my family, I believed I had a particularly close understanding of how Grandma felt because I myself had suffered temporary vision problems when I was thirteen. My family had made a trip to Israel, and I came back with encephalitis, which affected my vision for about a year and a half. This experience helped me to have great compassion for Grandma; I empathized with her frustrations. I also had an understanding of how it was possible for a person with a visual impairment to enjoy art, because I had continued to draw throughout the time I had my own vision problems.
Grandma and I grew even closer when I was in college, studying art history. By that point, she couldn’t see at all. Even though she had never studied art history, she loved art and was familiar with a variety of artists, so I would explain to her what I was learning in my courses and describe pieces of art to her. Our conversations led me to look for books and programs about art for people who are blind and visually impaired; I assumed that such basic resources must exist, but was surprised that I could find hardly any at all. I was surprised to find that most people questioned my assumption that people who were blind could create art, let alone enjoy “visual art” and sculpture.
When I finished college, I went on to study at Harvard and came to know Professor Howard Gardner, who was renowned at that time for creating a theory of multiple intelligences. Professor Gardner, in turn, introduced me to Professor John Kennedy, University of Toronto, who had been pursuing drawing and very simple tactile exercises with blind people, as well as exploring how blind people could understand concepts like perspective. These ideas became fascinating explorations for Grandma and myself; we worked with cognitive psychologists who were thinking about what blind people could understand about art and with other blind people, talking about these concepts and viewing art together. Grandma was very interested in the idea of forming mental images of art and of concepts of style. She was a key reviewer of our experimental work — inventing a “tactile” and “verbal” language to translate the visual into what we now call a “multimodal” language for blind people. She conducted our earliest trainings at museums with me.
As part of our explorations, we began taking other blind people on field trips to museums. I hadn’t gone to museums with Grandma before this. This was 1987 and in all of New York City I could only find four museums and two art galleries that truly welcomed our group: The Metropolitan Museum of Art, the Museum of Modern Art, The Queens Museum of Art and the Museum of American Folk Art, The Merrin Art Gallery and the Andre Emmerich Gallery. There were perhaps ten people who were either congenitally blind or had lost their vision in our group, and she had a lot of fun with the different students. I called her Grandma, as did most of the other students. She became everybody’s Grandma! She was crucial in encouraging and motivating those who felt disheartened about their vision loss. Her attitude, long before Obama coined the phrase, was “yes, we can!” Grandma would say that if we use our brain, we can figure out how to accomplish our goals.
Many New York City artists helped us to create tactile diagrams and replicas spanning the entire history of art to teach both formal concepts, as well as the history of art from pre-historic through contemporary times. Important artists and art historians volunteered their time to help. It was an exciting and personally fulfilling time. It also was a time of great merriment. Our little class went to see a film in a movie theater. We relished the looks we got from the folks on that line! What were all these blind people doing going to see a film! Now this is a common idea, and audio-description for film and theatre are available.
Originally called Art Education for the Blind, my organization’s first class included a student who was very depressed and was not leaving his apartment. In fact, he told Grandma he was considering suicide. Well, Grandma “gave it” to this gentleman to live life and not complain. Grandma really got through to this gentleman who, though blind, took back up the photography that he loved, got a job and got married. He was just one of the many she motivated to live a fuller life.
When we went to museums, Grandma’s favorite thing was touching the sculptures in the galleries. She loved the feel of the sensual shapes, and describing what she felt when touching the artworks. The Metropolitan Museum of Art was one of her favorite places because people with visual impairments are permitted to touch the objects in some of the galleries. And after I had children, we would bring them along on our museum visits. In the galleries at the Met there was enough space for them to have a sense of freedom. In our new roles as great-grandmother and mother, Grandma and I both appreciated the museum’s accessibility and warm welcome for a variety of needs.
My own thinking about what makes for a good and meaningful museum experience evolved over the years I made these visits with Grandma and other visually impaired people, as well as with my young children. At first I was primarily interested in museums with touch tours. But as Grandma aged and grew frailer, she needed a walker and eventually a wheelchair. I found myself selecting museums based upon considerations such as: Are there difficult steps to climb? Is there a ramp for a walker or wheelchair? Are there benches throughout the galleries where we could sit and rest? When are the galleries less crowded? What about the café—does it have a Braille menu? Is there enough space around the tables to accommodate a walker? As Grandma lost her hearing, I began asking whether the museums’ audio guides were T-coil compatible. And when we began to bring along my children, I chose museums that had art spaces for children and were “kid-friendly”.
One of the most important things we all learned from Grandma over the years was that just like sighted people, all blind people are not looking for the same experience at a museum. Some people want to be able to touch the shapes of sculptures or tactile diagrams, while others prefer evocative verbal descriptions. As she herself grew older, her own desires for experiencing art changed. As she aged, she had a “tactile aversion”: she no longer wanted to read Braille, or to touch the tactile paintings. Her greatest pleasure, instead, came from listening to verbal descriptions. She particularly loved my husband’s descriptions of architectural sites we visited together.
My mother used to take Grandma to opera and other musical events, but the visual arts were our special bond. She was an inspiration to her grandchildren, great-grandchildren and a multitude of others throughout the twenty-five years that she and I together pursued making art accessible for the visually impaired. As my brother said so well, “Grandma lived an incredible life of love, independence, and courage. I never heard her complain about anything other than her shoes. The way she dealt with her adversity was an inspiration and lesson.”
She used to tell me that she would always be “in my pocket.” When I went to special events she couldn’t attend, such as several occasions when I was invited to the White House, it did indeed feel as though she and I were there together. So many times, she said, “Elisabeth, I wish I could be in your pocket.” You know that Grandma Judy will always be in my pocket. And my friends and colleagues, whoever has been your inspiration, I hope they continue to be in your pocket, encouraging you, too. While we sure have a long way to go, look just how far we all have come together.
In the last few weeks of her life, Grandma and I spoke of Art Education for the Blind/Art Beyond Sight’s future plans. She was thrilled by the White House support of our cause — really thrilled— and knew, as I know, that this is the first time in so many years that we’re seeing the possibility of great change in our field. She used to say, “Don’t tell me about the idea, tell me when the idea is done.” We are seeing exciting developments like the change in federal funding guidelines to include stronger “access” language, a tour for blind people of the White House, the May 2013 event with the NYC Mayor’s Office for People with Disabilities and the Department of Cultural Affairs convening all NYC cultural institutions to encourage them to make “everyone welcome, everywhere.” With all these changes, children with visual or other disabilities are learning daily living skills, acquiring self-esteem, and being included in all aspects of society.
When my son Elisha was seven years old, Grandma said to him, “Have a good life.” And that has been the essence of Grandma’s and my efforts together: that all people should have a good life. As I continue to push forward with the work we began together, Grandma, always elegant, always encouraging, is still in my pocket.
Elisabeth Axel is the founder, president and creative director of Art Beyond Sight (ABS), originally named Art Education for the Blind. She graduated from Tufts University with a degree in Art History and pursued graduate studies at Harvard University. For 15 years, concurrently with founding and leading Art Beyond Sight, she served as a senior lecturer and educator at the Whitney Museum of American Art in New York City.