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William Miller
Brooklyn, NY
Neighborhood: Greenpoint



ARTIST STATEMENT: I was diagnosed with Huntington’s disease, an inherited neurodegenerative disease that causes the progressive breakdown of nerve cells in the brain and is symptomized by a loss of motor control and balance, memory loss and aggressive and unpredictable behavior. There’s no treatment and no cure and it’s ultimately fatal. In this project, We Travel To And Shall Be Lost In Always, I use video, sculpture, photography, and performance to highlight my experience with this disease that currently affects my short-term memory. I'm drawing relationships between my failing memory and the dual crisis of digital media and storage know at “bit rot” (the decay and corruptibility of digital files) and the “digital dark age” (the mass loss of digital information due to antiquated and outdated hardware and software). Digital files and storage, what Bernard Stiegler called “tertiary memory”, represent a contradictory space of inexhaustible memory but one that's entirely intangible and in danger of decay, corruption, and obsolescence. And so it is with human memory, especially one compromised by illness.
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This is the documentation of a performance from the Re: Art Show which took lace in the old Pfizer manufacturing plant in Bed-Stuy, Brooklyn on October 21, 2017. Last year Pfizer was in the trial stages for a drug to treat huntington’s disease. There are no drugs that treat HD so many people in that community had high hopes for this drug. Pfizer called the trial the Amaryllis study, and it was named for the official flower of HD advocacy, because Pizer knows how to market. In fact they spend 17 times more on marketing than they do on research and development. The trial ended in failure when the drug failed to improve movement, cognition, behavior or memory. A row of red fresh amaryllis flowers is laid out in the corner of the the space. High above on the wall is a projection of my video Sullen Entropy (2016, Video, 6:11 minutes) where I appropriated text from a Facebook page for victims of Huntington’s disease, their families and caregivers sharing harrowing stories about living with HD. A photogrammetric process causes the text to decay and break apart. Because of my failing short term memory I memorized the chemical structure of this drug at the moment that it disappeared into medical history destined to be forgotten.In the performance I walk into the space between the flowers and the projection and using charcoal sticks I draw the chemical structure to the best of my memory. This drug and my brain come into contact for the first and last time.


I’ve appropriated text from a Facebook page for victims of Huntington’s disease, their families and caregivers. The stories they share on these pages are sometimes mundane but occasionally harrowing because of the traumatic experiences and terrifying unpredictability of the HD sufferer who frequently can’t control their temper and violent outbursts. I leave these posts with their sloppy spelling, poor grammar and other marks of emotional and physical haste. I then print the posts, scan the prints and put the files through a photogrammetric process (up-ressing) that causes the text to decay and distort and break apart.


The video features me in a studio environment doing a standard neurological exam that is given by doctors to assess motor and sensory responses, especially reflexes, to determine whether the nervous system is impaired. People with HD are frequently giving themselves these kinds of tests, looking nervously for ticks or hand shaking associated with early stages of Huntington’s. For them, the consequences of finding flaws in these neurological self-tests are profound and life-changing.


Frames and Focus opens in a studio environment with a dark gray background. My face is looking directly into the camera. Soon, a child’s hands can be seen emerging from the bottom of the screen. They reach up and start to push my cheeks together. A low, slowed down voice can be heard encouraging the action. The child, who is my son, slaps, squeezes and smushes my face, sometimes enthusiastically, sometimes reluctantly, while I try to keep my eyes straight ahead. I think there are physical and emotional parallels between this piece and Vito Acconci’s 1971 video Pryings as well as Hannah Wilke’s 1974 video Gestures except that in both of those pieces, it is the artist’s hand that is in control. I’m ceding some authority of my corporeal form to my 4-year-old son.


I’m dwelling on the meaning of chance as well as illness narratives in the video which features a lone voice telling an intimate first-person story about going to the hospital and receiving a diagnosis for HD. An unfinished 3D scan of my head is turned by an unseen force. As the story progresses it becomes clear that mistakes, miscues and flubs have been kept in the audio, highlighting the fact that the reading is a performance rather than an account.


 








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