In 2001, I left my university Professorship in Sociology to work on projects that combined images and text, believing that they would open people’s eyes, literally and figuratively, and help people to face issues of life and death which we generally avoid. Over the past seven years, I have created photographic projects that challenge stereotypes of the aged, the infirm, and those in the last stages of life.
This body of work began at a municipal old age home in Mexico. I then documented a person-centered approach to Alzheimer’s care in the United States; my photos and text appeared as a book in 2004, Alive with Alzheimer’s (University of Chicago Press). The German edition (Alzheimers und Lebensqualitat) was published in 2006 in conjunction with a three-year traveling exhibition in Germany. I continue to photograph the benefits of high-quality Alzheimer’s care in the United States, Japan, India, and France.
My newest project deals end of life care, with many photographs made in the same four countries over the last two years. My goal is to show how the experience of dying can be enriched emotionally and intellectually for patients and for family, friends and caregivers. Mother Theresa said as she cared for the dying in Calcutta, "We cannot do great things, only little things with great love." My project shows some of the small things that are being done with great love by those who are engaged in the palliative care and hospice movement.
None of these projects are exposés of bad practices and practitioners. Instead, they focus on ways to maintain human dignity in the face of the natural processes of aging, serious illness, cognitive challenges, and death. Each successive project demonstrates that being defeated by the ravages of age and illness is not solely the result of biological degeneration but of the failure of contemporary social and cultural institutions. Even under the most debilitating conditions, given the right support, it is possible to sustain the dignity of the individual and members of his or her surrounding world.
I know from my own experience that few of us are adequately prepared to deal with the difficulties of having family members and friends with cancer, dementia, heart disease and other chronic illnesses such as ALS and end stage HIV/AIDS. And as we turn our faces away from illness, we also too often close our eyes and hearts to the dying process. When a doctor states, incorrectly, “There is nothing more we can do”, the reference is to curative medicine’s inability to eliminate the disease. My newest project shows that in hospice/ palliative care a great deal more can be done, assuring that the afflicted person is accompanied and comfortable.
People rarely make advance visits to places where dementia care or palliative terminal care is offered. My projects offer a symbolic journey through the end of life by showing those whose lives and deaths have been eased by the best of programs. Sebastião Salgado wrote about his work on migrations: “I hope that the person who comes into my show and the person who comes out are not quite the same.”
My goal is to change minds and hearts, which is the foundational goal of social documentary photography. My aim is for this work to be a catalyst for education, cultural understanding, and social action to extend the quality of life until its very end.