In late summer through early fall of 1976, Ryan Herz’s job was taking ID photos for the patients at a facility for the developmental disabled. This gave him a unique opportunity to document a fragment of humanity the public at large rarely, if ever, sees. The resultant images are of patients who cover the landscape from mental retardation and severe autism to Down’s syndrome and brain damage. It is important to know that, even though some may look like adults, they are emotionally and developmentally children.

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"Disturbing, haunting, beautiful and ugly. One can't take your eyes off the subjects. They are extraordinary pictures, almost like classical fashion photographs. The photographer so humanizes their pain."

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These never-before-seen portraits were completed in three or four sessions. “I had just a few minutes with each person,” Herz explains. “This both forced me and freed me to be instinctual rather than manipulative.” That spontaneity coupled with the intense humanity and the unfiltered emotions of the subjects gives the photographs their power.

Drkrm. gallery is proud to present this powerful and important body of work. A portion of all sales will benefit The UCLA Foundation Medical Genetics Division

Artist statement

Exhibition essay by David A. Hovda, Ph.D.
Professor, Division of Neurosurgery UCLA

The Children of Edgewood

These images are of patients who have endured various developmental disabilities. Many exhibit the anatomical features of chromosomal damage. Others appear to have sustained damage to the central nervous system. Still others show the signs of genetic damage. The diagnoses most likely cover the landscape of mental retardation, sever autism, dystrophies, Down’s syndrome, inborn errors in metabolism and/or brain damage pre or post birth. As is typical, these children will survive, with some living decades. They exhibit different degrees of sensorimotor function with many having severe forms of spasm and joint deformity. They all experience pain. Conversely, they also experience pleasure and the excitement of attention which is self evident in many of the photographs. To what extent they have developed cognitively depends upon their specific diagnosis. However, in most cases they retain the ability to interact with their environment and their loved ones. Most will deal with the sensations and desires associated with puberty. The fact that they sense their environment is not in question. However, it is still unknown if they perceive the world around them the same way as a normal unaffected person would.

Viewing these photographs reminded me of all we don’t understand regarding the human brain. Looking at each patient I felt the need to reach out to them not only to provide comfort but also to let them know they were not forgotten or abandoned. One cannot help but see in their faces many of our own emotions. I myself wonder what they feel in terms of dreams and aspirations. Do they truly understand what lies ahead? Does it really matter? The patients do not appear to exhibit hopelessness but in a strange way curiosity and a desire to engage with other people. How much of this reflects a person locked up in a restricted brain/mind/body or an individual that has just adapted, I can’t answer.

At least from the genetic perspective these patients demonstrate how much can go wrong with only a one or two chromosomal deviation from the norm . In one way each patient brings to light their unique existences with many looking at first hand like young adults. However, after even a brief period of interactions, it is obvious that as described many years ago they suffer from developmental and not adult disabilities. Consequently, the normal maturation of the central nervous system is restricted it its ability to mature. Along with this are imposed the limitations of growth and the prevention of attainment of most of what makes up adulthood. When training those that will care for them, it is important to instill in them that although what they see is an adult, they are dealing with a child.

As is evident from the individual photographs, these “children” were physically well cared for, especially given the era in which these pictures were taken. Over the years the course of management has improved however for many of these devastating medical problems there is as yet still no cure. There has been a major emphasis on genetic counseling for perspective parents and advances in genetic screening. Seeing these photographs I am overwhelmed with sorrow, sympathy and an appreciation for the human spirit. I am once again challenged as to what those of us in neuroscience research can do and learn in order to make a difference.

David A. Hovda, Ph.D.
Professor, Division of Neurosurgery
UCLA

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