Memory, Identity, and Comedy: Conversations with author Susan Krieger

"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: 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.

Driving! Really?

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

  1. "Things No Longer There" book website
    . Includes information on accessible versions of the text. This books is available on

  2. Tech Nation with Dr. Moira Gunn on itConversations Network

    "Play now" link in browser or download mp3

  3. KQED Forum Interview

    Go to the "listen" link and audio should stream to your browser

  4. "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.

  5. Audio reading of this post

Revised July 10, 2008 for typos and reference details


Help! I’m being updated to death!

Many applications and systems software take advantage of the “always on” status of networked PCs by performing frequent updates for security precautions as well as normal regular updates. These updates can be very intrusive, indeed competing with each other for attention, and sometimes cause havoc of their own. This Vision Loser just spent several harrowing hours overcoming a bad attack of update mania by Windows, Norton Security, and Mozilla Firefox.

I’ve been in transition from a notebook with a dead screen to a different notebook awaiting a new tablet PC. I was just setting up an external monitor, using the extended desktop which requires alignment of primary and secondary screens. With the multi-tabbed Display Properties dialog on the screen, my attention was rather rudely diverted to Mozilla Firefox announcing its intent to update and then failure during the process, probably lack of Internet or wireless connection. Turning attention back to the Display Setting dialog (so I thought), I clicked OK and watched in dismay as the pretty pastoral screen on Windows XP appeared. The problem for my weak eyesight is the extreme brightness of that display theme versus the High Contrast Black I work in comfortably. Apparently, I had changed the theme as well as monitor settings. For a while, I felt like the proverbial deer in the headlights,stunned, and immobile.

Well, OK, I’ve been through this before, but not on this particular notebook with this external monitor, both beaming away at my overworked photoreceptors. My remedies were there if I could see through the brightness, relying on the hit-and-miss, ugly-sounding, but often help Windows Narrator to talk me through the menus, tabs, and buttons:
1) Bring up Display Properties again and fumbled around for High Contrast Black
2) Go to Control Panel then Accessibility and find, I hoped, the Accessibility Wizard
3) Go to Start, All Programs, Accessories, Accessibility then, finally, the Accessibility Wizard
4) Work through the Windows Explorer into Windows then Accessibility folder to the Accessibility Wizard

For one reason or another, each of these failed. Either the Accessibility Wizard wasn’t where I remembered it or I couldn’t reach it in a cascade of menus nor could I locate High Contrast in Display Properties.

In frustration I resorted to a sighted person, a grumbling sleepy teenager, to talk through the Wizard and restore my relative serenity of dark background. Meantime, Mozilla and Norton were battling for attention to do their updating business.

So, what’s the big deal here? First, is the annoying disruptive practice of of semi-automatic updating that saps away energy and introduces user error opportunities. That is, for this Vision Loser, updating at the wrong moment is sometimes a major disruption. At least here the error’s consequences were totally visible rather than a small change like a check box that could have required a lot of trace-back and debugging to find, later, after I’d forgotten where I was making changes..

Second, since I rarely work in the normal bright Windows mode, I experienced a visceral reaction to the unwanted change. In a recent podcast, NosillaCast’s Alison Sheridan discussed this phenomenon in the context of the Mac Finder, expressed in terms as “physical assault” by a hyper-bright window. Often sighted people, especially designers, have the misconception that the brighter and more colorful the effect the better, and that this rule applies especially to partially sighted users. Rather the mantra for me is “Contrast, Contrast, Contrast”. A simple screen with clear outlines, a restful dark background and white or pale foreground, with images only that have clear meanings is the ideal. I’ve been working on this in the form of a Java framework for the @Podder podcatcher I’ll discuss in a future post.

Two improvements in my practice did occur from this little episode. First, I now have a better organized Start Menu with a special folder named “911 EMERGENCY” which stands out in a folder list in Start Menus and on the Desktop. It contains shortcuts for the Accessibility Wizard for which I’ve memorized the options and their order, as well as the Mouse Settings, and launchers for order and Magnifier, the built-in Windows accessibility tools. This is the equivalent of carrying a small first aid kit on a hike, and the lesson I learned today was never to leave home without it.

Another benefit of this excursion was a catch-up on the Accessibility Features of Mozilla Firefox, rightfully touted as low-vision friendly. I learned the setting that allows me to just start typing to find a part of a web page — neat! There’s more to learn and this confirms my recent decision to set up my browsing environment around Firefox and its add-ons (including the TextAloud reader and soomer).

Moral of this story: Beware of hazards of over-zealous updating applications and give them the right of way.

One more thought, wouldn’t it be nice if the updating applications could be spoken rather than pattern-matched out of dialogs, e.g. “Mozilla Firefox wants to update its XX and YY components to make your browser faster/safer/better. You’ll notice the following changes (or none) which may affect these add-ons…”. Just like a good dentist or other professional will give you a coherent explanation of its planned actions, so should software interact with its human clients

So, Norton, Adobe, Microsoft, Mozilla, and all you other update maniacs, think about every intrusion you foist your users Is that change really necessary? Could you, maybe, fix all your buffer overflows before the next release? instead of one at a time? How about checking if your user is using a screen reader, or has voices available, and give a polite request rather than only a dialog to join the window clutter? Could updates be no more complicated than an install? Could the dialog boxes at least be readable by simple screen readers like Narrator or even by low vision users? Come on, you inaccessible update bullies, mind your manners. Please, please, please, please don’t update me to death!

e-Voting = “Extreme Voting” = a moon shot for democracy ?

E-voting = “Extreme Voting” = “moon shot for U.S. democracy”

California’s Secretary of State office is facing an unexpected early primary in 2008 by performing a “top to bottom” analysis of the preparedness of its electronic voting systems. A series of reports by security and accessibility researchers documents the bad news that flaws abound in 3 commercially provided voting systems and, beyond that, in the policies, procedures, and training that enact voting in a polling place.

My initial reactions to reading the accessibility analysis was that disabled voters were being thrown into a situation akin to an extreme sport, testing their limits of skills and endurance, both cognitive and physical. Likewise for software developers, testers, and certifiers face extreme challenges of time and performance. In sports terms, the athletes, judges, and sporting officials) are participating in a high stakes competition and race toward deployment where the rules of the sport are still being made, marred by rampant reactions to disqualification, maintaining credibility, and keeping the sports attractive to viewers. Is this any way to run a democracy?

Problems documented in the California reports are so varied: wheelchairs don’t fit under polling station tables; voice users take 4 times longer to vote, often requiring standing; voices are uneven in speed and intelligibility; instructions are convoluted, with poor grammar; eavesdropping on votes and large print screens isn’t difficult; keypads require special plus and often fall out, disabling the workstation; personal sanitation practices must be put into place for a succession of voters handling the same equipment; multiple natural languages other than English must be supported; and the list goes on. Even if standard codes of accessibility conformance were met, accessibility is inadequate without usability, which addresses ballot design and the overall ability of the voter to accomplish the task with reasonable effort, accuracy, and satisfaction.

Security? As now documented in a check list of vulnerabilities from many studies in New Jersey and general knowledge of the security education community, voting systems are highly vulnerable to tampering and simple misuse: Physical entrance to change memory cards (using a hotel mini bar key in one study); equipment failure in (don’t we all curse our printers?); add to tabulation difficulties, e.g. complex rules for multiple choice races; ambiguous configurations of hardware and software that make replication of election conditions impossible; unregistered user accounts that might enable login to change results; applications running over an inherently insecure operating system, Windows; and this list goes on. Running a democracy on inherently, well, there’s no better word for it but “flaky” electronic systems is folly if democracy is at stake, both in voting results and in credibility of the process.

Software engineers know well the above manifestations of underlying systemic failure. Source code will inevitably have errors, if not coding mistakes, then problematic conformance with specifications. Getting specifications complete and consistent in both art and science. It is tedious, time-consuming, and expensive to design and execute test cases to identify software failures (e.g. overflow) and assure that all states in a vast space of user and operator actions, invoking the rule of thumb that half of the lines of good code are for handling exceptions. Configuration management is a challenging process in itself, keeping track of components, both hardware and software, and what it means to be version of a system. And we cannot forget documentation for users, which includes end voters, poll workers and vote certifiers, installers, other developers, and buyers. What we’re talking about here is literally millions of lines of code, specs, tests, documentation, procurement, and other artifacts.

Furthermore, voting is complicated by its infrequence, requiring the assembly of special equipment, trained poll workers, and an accessible environment only a few times a year. The success of a voting setup requires enormous outreach to draw voters to their polling places (which may include homes). For people with “special needs”, additional outreach is required to prepare voters for their experience, assuming they have been able to ready themselves for their private voting decisions. Wow, democracy is an expensive process!

In the view of many computer and policy minded people, the U.S. system is inherently flawed by the ideology of the marketplace. Multiple vendors offer competition but not necessarily better products and encumber state and local agencies with complex purchase and CYA decisions. As in many other areas of safety and finance, regulatory protections have been blended with industry self-interests to the point that broad regulation is non-existent independent of the operational purchase and oversight demonstrated by the California state officials.

The kicker for computer scientists, an often libertarian breed, is that source code is unavailable for scrutiny enabling the practice of “{security through obscurity”. Indeed, many of the flaws suspected to undermine the election system vulnerabilities (reported in separate confidential reports) seem to track back to two root causes: (1) violation of rationalized coding practices known to well educated software developers, testers, and tech writers and (2) an industrial practice that never works, namely to attempt to retro-fit security and accessibility onto code modules and designs. The power of “open source” dominates much current thinking about software development in that openness spreads the quality responsibility among many developers and invites improvements from diverse minds without destroying the market place opportunities for customization, maintenance, and general support of open source code ndeed, in some countries, Australia I believe, voting system code is at least open for all developers and crackers, leading, at least in theory, to closing of security vulnerabilities. Yes, this is ideology at war, the proprietary and unregulated versus the transparent and, with sufficient knowledge and effort, regulated by inspection and use. Democracy in the U.S. seems to have become confluent with the marketplace and profit, a potentially, if not already realized, lethal combination.

I am in awe of the California “top to bottom” effort. I have some experience with computer security education, know the high quality of the academic researchers who wrote the reports, and understand quite a bit of the lingo of security and accessibility. That the work was done within a period of a few months is remarkable in ints elf and the reports are eminently readable.

As I read (actually listened to) these reports, I was struck by the magnitude, complexity, and inspiring goal of a credible, accessible electronic voting system. The challenge is comparable in many ways to the JFK challenge to get humankind to the moon in a decade. Lots of engineering and management expertise, the memory of recent deaths of astronauts, the image of the moon hanging there in the sky, the motivation that comes from teamwork, the not forgotten shock of Sputnik, so much spirit headed in the same direction. The year 2000 election is today’s Sputnik, although there aren’t any Russians to race, just our own U.S. political system. The California report suggests many ways of mitigating at least security vulnerabilities and the enormous complexity of addressing all forms of disability in multiple languages. In some ways, the e-voting situation is more complex than a rocket to and landing on the moon because so much human fallibility is involved. The moon shot succeeded with a rethinking of the science and engineering principles from the Mercury to Apollo and the maturing of a few generations of engineers and managers.

My personal voting experience in 2006, first time voting partially sighted was not satisfying. The Election Board told me of their nice new crisp touch screen system but I only managed to make it in for Early Voting on the last afternoon, due to teenage driver scheduling issues. Indeed the screen was sharp and colorful but the overhead lights and the screen in self made me recoil, the continual complaint of the photophobic partially sighted. My driver/nephew read the choices to me and we muddled through a 40 page ballot, losing stamina when it came to the propositions. I had no privacy, surrounded by poll workers and other voters, a bit scary as a blue voter in a red county. Something was printed out, but it could have been a grocery list for all I could see. Well, I take responsibility for not being prepared for my voting experience and have vowed to seek out demonstrations and ask more questions before I next vote.

So, what would I do if I were in charge? The California accessibility report convinced me that the sheer number of human factors makes accommodating every variation of every disability impossible. Democracy must trump accessibility, except for issues of entry to the polling place. Trusted sighted poll assistants that accomplish the voting task in whatever time it takes and at whatever low level of technology required is preferable to a high tech sabotage of election results. Let’s put the accessibility criteria in the category of a moon shot achievable within a half decade provided a new regime of voting systems is attempted. Security dictates only one conclusion: throw out the current systems, adjust the ideology of private vendors to accept transparency, and design the system in the broadest sense, including not only hardware and software but also polling place training and outreach education to all voters.

Here’s a little experiment for sighted people to understand how it might be voting. March down to your ATM with ear buds or ear phones and withdraw $100 from your account. No voice-enabled ATM, go elsewhere, but also complain to your bank. OK, close your eyes and find the little hole to plug in your ear buds, listen to the instructions, and follow through the menus. Correct or cancel out if you make a mistake. Never mind the lines of gawkers behind you if you’ve chosen a busy time. Like that voice? get used to it, we Vision Losers live with those robotic speakers and are thankful for their interaction. Have to memorize keyboard and stretch to the Enter key? Can’t tell where the menus will lead you or how many key strokes to get there? Forgot what you wanted to do? Actually, it’s pretty easy, after a year of monthly practice, only takes me about 10 keystrokes, less than a minute, at Chase Bank, except if the service throws in a credit card offer before returning my card, which causes a bout of cussing and complaint to the nice service people inside the bank. And my favorite ATM serves both walk-up people like me and drivers, so I’m often in line with big trucks. But, my point is that any ordinary citizen can get the flavor of using a service by key and voice only, somewhat like I imagine a voting system for the blind.

Am I over-stating the complexity and significance of e-voting? I really think the model of e-voting as an extreme sport captures the challenges for accessibility and the cross-section of disabilities, and will require a great deal more applied science, testing, and sensitivity to needs if the ultimate goal of private voting for every citizen is to be achieved. And I’m sorry but I think that is a less worthy goal in the near term than a credible election in 2008. Is the level of effort to overhaul and implement a national voting system comp[arable to a moon shot? Yes, but this is 2007, not 1963, and enough is known to do the job well enough, accepting imperfection but not failure, if ideologies can be controlled.
eferenced Links:

California Secretary of State “Top to Bottom” Review with
links to reports in PDF on 3 voting systems and accessibility

Overview, U.C. Davis Prof. Matt Bishop, Study Director

Podcasts on “accessible voting”