"Things No Longer There: A Memoir of Losing Sight and Finding Vision", by Dr. Susan Krieger, published by University of Wisconsin Press, is a great introduction to personal facets of vision loss. Better yet, audio interviews with the author delve further into memory, identity, and comedy as well as the technology of living with and writing about our condition. Podcasting brought the author and I into correspondence and acquaintance that has really enhanced my transition, as well as proven my claim that the podcasting media is especially great for Vision Losers. An accessible version of the book is available, as described on the author’s website, along with spoken sample chapters.
In this posting, I offer my own personal observations on some of the topics discussed in the audio interviews, often raised by the interviewers and listeners. This posting fits in with other "As Your World Changes" entries: Bookshare.org as an excellent source of reading materials; screen and text readers and other assistive technology enabling writing while blind; grousing about availability of accessible reading materials on the web and from publishers; and the evolution of a Vision Loser’s philosophy of safety, energy, relationships, appreciation, and support.
SK tells about a pre-dawn bird-watching trip involving a dark road. On every Vision Loser’s agenda is that disturbing question about "hanging up the keys to the car". When, why, how, and who makes you do it. Like SK, I had night-time experiences when the road kept disappearing. I once spent an afternoon practicing my way back home from an upcoming evening party held about 4 miles from town, on a winding road. I made it back OK with the only real terror on a bypass within a mile of home. For me, today, not driving remains a real limit, in a town without public transit, a taxi company where the dispatcher is also a driver, and two teenagers with busy schedules and heads in other worlds. It haunts me that I cannot remember the last time I drove, probably just a routine return from downtown but during a winter stretch (February 2006) when I was never sure that I could get back up slippery or foggy hills to home. It was a relief when I finally figured out I had quit driving, but font memories still come back about starting for a get-away drive without having a target and, in my younger days, cross-country trips.
Reality and Identity — what is your inner vision?
SK speaks eloquently in her book and interviews about the reality that emerges in accepting, or rejecting, the identity of being blind, or visually impaired, or however one chooses to term the condition. For SK, the identity is one among many in a lifetime of personal relationships and a scholarly . career. As one interview caller notes, vision loss, is in many ways, just another life change, much as you are not the same person as in high school, progressive vision loss is just another set of forces that yield reasons for a person to grow and understand more about herself and her world. The appeal of SK’s book and interview persona lies in her direct embracing of the transition and changed reality, using writing as an instrument of "processing that loss".
I’ve adopted "Vision Loser" as my identity because it is such a blunt recognition that surfaces the "Loser" model in our society, a force to counteract in my mind and actions. My sense of identity is clouded by several years of covering up my condition during a period of employment where I felt being out as visually impaired would harm me. My colleagues were steeped in aviation, the military, and religious intensity of Mormonism and evangelical Christianity, none of which project compassion toward a feminist, unmarried, ambiguously parenting, curiosity-driven, techno-oriented crone-like woman. I had no specific conditions to request for A.D.A. accommodations, just turn off the damned bright overhead lights, let me set the cursor size on then classroom projector computer, and don’t ask me to flip burgers at the college’s picnic. In my last semester, as I engaged my students in projects to produce an assistive software package (@Podder podcatcher), I began to realize I’d been expending more energy coping with and covering up my condition than I was getting work done. I also figured out students were having extra trouble reading my writing when I couldn’t see that I hadn’t erased the white board before writing on it again, duh. My take-away from is that the adaptations required for keeping me productive were so utterly trivial, and probably beneficial to others of a certain age, that the stress of covering up wasn’t worth it. As SK notes from teaching a course of "Women and Disability", it’s possible to become amazingly adept at covering up, a skill which can backfire when differences become viewed as deficiencies, while also being a skill one can use later to help others feel comfortable with your disability. I fear that covering up invoked a "loser" or archetypal Victim mind-set requiring, for me, extra effort to overcome.
Work, energy, time — where does it go?
SK rei-iterates through her interviews and vignettes in the book that maintaining productivity during vision loss is really hard work — new skills to acquire, updating oneself as new technologies come along, under constant vigilance for safety. So, true, a lazy Vision Loser must be a real pain for self and family.
SK’s description of being hit by a car is so scary I cannot reread it. I take an evening walk along a lightly traveled housing cul de sac where I can avoid cars but silent, fast-moving bicycles on the downhill are teaching me to listen for the whiz of their tires. Ditto, quiet hybrid cars can sneak out of the haze of my vision. But the beauty of this walk is the freedom of movement that comes from retained vision to see sidewalks, muscle memory of curb height, trust in a smooth pavement, and lack of obstacles. These allow me to walk briskly, freely, youthfully, and with release of energy after a day’s hesitant navigation around objects in my house or or wherever. It almost feels like flying. However, I sometimes find myself offering a friendly nod to a back
hoe tractor I thought was a tall person, walking
up a pile of gravel wondering why the sidewalk was headed down, unable to recognize any other walkers by name (except for the gregarious Jack), jumping in surprise and zig-zagging the wrong way when encountering other walkers, stepping on small dogs and once cutting in on a baby stroller. Safety is so ever-present a part of reality consumes energy beyond my prior imagination.
As a fan of Dr. Moira Gunn’s Tech Nation show, I was delighted by the techie content of her interview with SK. How great to hear about cutting-and-pasting text by ear not eye, using audio to edit writing, fighting with PDF accessibility, sensitizing someone like Moira Gunn to how the blind read and work, and SK’s activism to expand access to electronic versions of publications. This is a singularly great interview about technology uses in transition to vision loss.
SK provides a compelling way of looking at the common question of whether our other senses become stronger as vision fades. The key changes occur in the mind, finding alternative ways of working, learning to double check for mistakes, etc. True, the other senses get used more as new scripts for work are created by our minds, practiced and debugged, over-riding vision dependent ways of working. But the locus of change is in the mind, or brain, rather than sense organs.
SK and a caller discuss the "slowing down" effect, perhaps we might call it a benefit, of vision loss. Especially when we think of vision loss as concurrent with aging, "working more slowly" is more concrete, pressing, and real for Vision Losers. I actually think not in terms of minutes or hours consumed by tasks, but some form of fictional energy units associated with time spent on a task, number of mistakes made then caught then corrected, worry about consequences of mistakes, degree to which my fingers and photo-receptors are being worked, and when my internal battery is going to reach the 20% level beyond which I get "tired and cranky" as well as more error-prone.
Seeing, Not Seeing, and Thinking you are seeing
SK speaks of the newly found enjoyment of seeing large things, like succulent plants and mountains and sunsets. Retained vision has a focus and quality of its own, not only because it highlights the loss but also offers genuine pleasure. Memory of landscapes and events decades past represent sources of distress for SK, e.g., a summer camp for youth that seems to have vanished into a housing development. In conjunction with vision loss, memory can fill in gaps and guide where and how one looks at surroundings. But memory in conjunction with vision loss raises another dilemma: is the thing I remember no longer there or am I just unable to recognize or see it from vision causes?
I recently retraced a short hiking trail with a visitor. With my vision I could follow the path but was constantly thrown off balance by "moguls" or drops in level for drainage or natural ground slopes. With the steadying arm of my companion trained to guide me, the walk was much as I had last felt, maybe 4 years ago. I see the trees and butte above in silhouette, dark outlines with little detail, but the enclosure of tall pines and the familiarity of the trail filled my senses. On each turn of the trail, I knew what was coming next and how far we had to go (up about 700 feet, around the back of the butte, then down). This particular morning brought two additional pleasures of weather and sound. A light rain cooled the walk, lasted only a few minutes, just as I had predicted, and symbolized the rainy so-called "monsoon" season of Arizona high desert. Also, a climber had scaled the butte and regaled the entire slope with flute music and Indian-like calls, somewhat eerie and reminders of reported sacred connotations of this Thumb Butte. On the far side of the mountain, the trail passed a clump of what looked like fire-damaged pines. My companion and I argued a bit as to the source, fire damage which he, but not I, could see, and pine bark beetle, which I remembered had devastated this region. We settled on probably both as causes of this particular defoliation. With SK’s images of place, I think back a month later to the role of memory in this little jaunt. I wonder if this would also happen at Mt. Katahdin, Monadnock, the Smokies, Lynn Canal, Galapagos, Mustang Island, or other places I’ve visited, sometimes with high frequency. Recent trips to new places, e.g., Tombstone or the Tucson Desert Museum, invoke a different sense, because I can enjoy the ambiance but do not really know what I have missed. Traveling with poorer vision is definitely different, but hardly less pleasurable, except for concern about contributions to a companion’s traveling experience.
Well, there is so much more stimulated by the book and interviews of Susan Krieger. This comparison of experiences is, for me, far more than just a past-time as I find her articulations of perception, feeling, and modes of operation so help me identify and clarify my own. Thanks for this book, Susan, and I look forward to more tales and advice in the next writings.
Reference website and podcasts
"Things No Longer There" book website
. Includes information on accessible versions of the text. This books is available on Bookshare.org.
Tech Nation with Dr. Moira Gunn on itConversations Network
"Play now" link in browser or download mp3
KQED Forum Interview
Go to the "listen" link and audio should stream to your browser
"To the best of our knowledge", Wisconsin Public Radio, segment 1 of "ways of seeing"
Streams by Real Player at link "Listen", may require additional software.
- Audio reading of this post
Revised July 10, 2008 for typos and reference details