self-portrait in setting sun by leslie feinberg

my camera bag by leslie feinberg

'Why and when I made these photographs'
by Leslie Feinberg
September 5, 2009

When I'm in pain, I clean; our home sparkled in February 2008. I was very ill, and wasting, being patronized almost to death by medical authorities.

During one of the long, sleepless nights, in the luminescent light of an iron-cold moon, I sat down at my computer and learned to create online web albums. I began by uploading family photographs as a gift for Minnie Bruce. I was moved by the ongoing, loving narrative that developed as the photos were grouped chronologically. I felt closer to the millennia of art made by women, often referred to as "craft," which documents the social history of family relations, loving relations--in the most fortunate of circumstances, those overlap.

By August my partner, Minnie Bruce Pratt, had to return to her job teaching at Syracuse University. I could no longer live independently in our fifth floor walk-up apartment home of 16 years in Jersey City, nor could Minnie Bruce continue to commute. I had days to prepare to leave the place I'd lived longest, and leave all of my political and social network, built over more than 35 years of living and working in New York City.

Leaving presented a particular crisis for me, because for most of my life I have been literally unable to visualize.

I lost the ability to visualize as a child, after being physically forced to stop using my left hand. Hard to imagine today, perhaps, that left-handedness in people was once considered a sign of "sinister" character.

As my ability to use my left hand withered, my ability to visualize waned. I lost all ability to close my eyes and "picture" anything in my mind: a copper penny, a lover's face. So leaving New York City, my home of more than 35 years, and Jersey City, where Minnie Bruce and I had made our home for so many years, presented me with an especially emotionally painful loss of memory--like an impending hard drive crash. In addition, I was coping with neuro-degenerative disease and its neuro-toxic byproducts.

With only days to relocate, I began taking photos with our little silver point-and-shoot, and continued to take thousands more in the months that followed as we moved to three more apartments and I traveled for care--a kind of geographic and emotional GPS of where I was and how I got here.

I used the photographs to help me organize short-term and long-term memory access storage in my brain, create frameworks for the metadata of memory and consciousness, and back up that information externally. I studied the hemispheric storage and recovery of memory in the human brain, expanding my use of tags, keywords and other meta-data of memory. I learned to do some basic programming, how to repartition and reformat my hard drive, how to work on Linux and Mac operating systems.

I also studied digital photo developing and printing at the Community Darkrooms. I digitized and am meta-tagging many thousands more photos--personal and historical--in an attempt to share online those that are in the public domain.

Working on so many visual images has had, I believe, a big impact on my brain, my memory storage and retrieval. My ability to visualize is coming back for the first time since childhood.

These photographs are the unexpected form and shape of my memory cabinet. They also reveal the geographic and social isolation of severe illness and resulting disabilities. This body of work reveals my inner struggle for articulation at a time when illness and disability--and discrimination and prejudice--were silencing my voice.

Making photographs may be beyond me now, because of illness. If I can't make new photographs, I will work on narratives from my already existing photo cabinet of 10,000 photos. I will continue to try to organize a digital "struggle memory project" and publish photos online. And this fall and winter I hope to find support for a project focusing on the relationship of disability to technology.

You'll find links to my photographs on my webpage:

I couldn't have done this photo work alone at a time of such illness and resulting disabilities. I am deeply grateful to the following individuals for help that has been literally life-changing.

-Minnie Bruce Pratt, for her consistent loving support of growth and development in every aspect of my life and health
-Beverly Hiestand, Dick Hiestand and Minnie Bruce Pratt for driving me around to take photographs
-Vernon Burnett of the Community Darkrooms for giving me an hour and a half of time that he didn't have in order to teach me why my favorite photographic memories were deteriorating every time I looked at them
-Carrie Mondore--my Photoshop guide, teacher, mentor--for working on each of these photos with me, sometimes a pixel at a time, helping me to develop my own independent aesthetic and to love digital printing
-Joe Carpenter for constructing a photo work area for me at home
-Rob Pusch for teaching me how to aggregate digital web media communication
-Torry Mendoza, videographer and graphic artist, for putting all the pieces together--connecting my photographic communication to my videos, podcasts, written word, and social networking tools
-ArtRage and its director, Rose Viviano, for creating and defending this space. ArtRage, just down the hill from us in our neighborhood, describes itself as no ordinary gallery. "Its mission is to exhibit progressive art that inspires resistance and promotes social awareness; supports social justice, challenges preconceptions and encourages cultural change."
-and last, but not at all least, Susan Farrell and Andi, for volunteering their labor and installed these photos for you to see

If you have had an impact on my photography, but your name isn't mentioned here, please don't assume disrespect--remind me.

For more information:

(Note: I ask people for permission to take their photo--even the feet of strangers on the street headed in an opposite direction--and show them the photos and delete all but the one they are happy with. I'm not aiming to "capture," but to connect; to make photos, not take them.)

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Leslie Feinberg
October 2008
Buffalo, N.Y.
Syracuse, N.Y., U.S.
too ill to work
where I live on the web