“Carolyn” is a photographic project by Nadia Markiewicz documenting a collection of death-related objects assembled by Carolyn Josephine Goracy in the final years of her life as she approached death from Juvenile Huntington’s Disease.
The project is presented from a disabled perspective, situated at the intersection of disability studies and contemporary Gothic aesthetics. The exhibition reframes collecting as a creative and meditative practice through which a person living with a fatal illness engages with mortality as an integrated condition of existence.
From the beginning of her life, Carolyn Josephine had a passion for all forms of creative expression, including writing, drawing, painting, fashion, and cinema. She was a sponge for historical knowledge, while pushing the boundaries of modern fashion and aesthetics and challenging societal norms.
When she was diagnosed at 17, no one around her was aware of Juvenile Huntington’s Disease, nor had any family history previously revealed it, leaving her alone with her own thoughts and speculations. Determined to carry on with her daily life, falling prey to depression and fear was never an option. She continued to create, study, admire, collect, and dream of a future in the arts.
As time progressed, her symptoms quickly worsened. By the age of 27, many of her natural talents had waned, and she turned to collecting as a way to express her thoughts creatively. A diverse collection, “Carolyn” consists of many objects that, at first glance, may seem unrelated or secular. This, however, could not be further from the truth. By looking deeper and connecting the items to the psyche of a young woman facing death, one can notice patterns of introspective thought and curiosity—qualities as diverse as the collection itself.
Death became a resounding theme for Carolyn Josephine, represented here not with morbid fear, but with respect and awe. She studied the structure of movement through bones, instruments that allow humans to peer beyond physicality, the beauty of creatures often deemed ugly or scary, and the magic and illusion surrounding death.
The inclusion of Disney characters is a reference to the often erroneous and overly exaggerated exposure to adult life that children receive through pop culture icons. Carolyn Josephine reminds us of the irony of these views by choosing to honor the “evil” characters rather than the intended heroines, posing the question: what is evil, and what does it look like?
When no longer able to physically express herself through traditional artistic means, Carolyn Josephine continued to push boundaries and challenge societal norms through her collecting. She teaches us that there are many ways to tell our stories and relay our emotions. She shows us that disability, sickness, and even facing death do not stop the expression of love, curiosity, and admiration. In fact, these experiences can help us experience life even more deeply, challenging us to rethink what we have learned. She asks us to pay attention and be curious—to assemble our own collections so that they may speak for us, even when we are no longer able to do so ourselves.
Dedicated to Carolyn J. Goracy (07/10/1992 – 01/26/2024)