Rebooting This Blog — — Reorganization and Future


Welcome to another decade of “As Your World Changes” about adjusting to vision loss using technology, plus a few other topics.


I started this blog in 2007 to reclaim my authoring skills, including the essential tasks of writing and editing. “Print disability” is not a handicap when spoken reading and writing are available and one has the time and stamina to build necessary skills. However, writing required a monumental amount of work, concentration, and frustration, because no technology is effectively accessible all the time.


After venting about limited local facilities to help my vision rehabilitation, I got serious and learned what I needed through podcasts and disability expos like CSUN. By 2008, I’d experimented with many assistive devices and settled on NVDA screen reader on Windows and the mobile Levelstar Icon (now defunct). Local iPhone service arrived in 2012, after a miserable experiment with an Android phone. My directory of services is called “Talking Assistive Technology”, available on this website.


After getting up to speed on assistive technology, my computing background led me to dig into the “science of accessibility” expounded in articles driven by troublesome use cases. Thrilled by the opportunity to vote for a wise man in 2008, on an accessible voting system, I wrote up my experience, later retracted. Invitations to professional venues led to several position papers.


For ten years, I’ve advocated for the local facilities I was denied, and now may be coming to town. Stay tuned!


The purpose of this ReBoot is to:


Below are posts organized by ‘Adjusting To Vision Loss’ human factors, ‘Getting Up To Speed with Assistive Technology’ to drive that adjustment, ‘Espousing On Assistive Technology and Accessibility’ to salve my professional desires, and ‘Becoming a Local Advocate for Living with Vision Loss’, plus a few posts that needed a home.


Warning: the blog is riddled with rotted links, to be fixed in time. As I now hang out with other retired active writers, I’m horrified at my wordy earlier posts. As the passion for vision-related topics waned and as my world changed, I’m now absorbed in the craft of writing.


Thanks for visiting this blog. Your comments are welcome. Let’s see where this phase takes me, my writing, and the local transformation we’re undertaking.

Learning to Live with Vision Loss

Getting Up To Speed With Assistive Technology

Expounding On Accessibility and Assistive Technology

Accessibility

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  • Web Inaccessibility: Are Muddled Use Cases the Culprit?

  • Is There A Killer App For Accessibility?

  • Hear Me Stumble: Web Accessibility Observations

  • Hey, Intuit! What You Got Against High Contrast?

  • Listen Up! Technology, Strategy, Materials for Non Visual Reading

  • Hypertext Considered Harmful! On To Structured Reading

  • Synthetic Voice Shock Reverberates Across the Divides

  • Literacy Lost And Found: Keystrokes, Pie Charts, and Einstein

  • My Accessibility Check: Let’s All Use Our Headings

  • The Techie Care-Giver Conundrum

  • My Accessibility Check: Images and Their Surrogates

  • Twitter Has Less To See and More To Hear

  • Amazon Kindle, Arizona State, What a Mess!

    Could Text-to-Speech Beat Kindle and Smart Phones?

  • Story: A Screen Reader Rescues a Legacy System

    Computing Related

    Accessible Voting And Assessing Government Accessibility

    I retract my voting zeal in deference to the Verified Voting argument requiring paper ballots. An unregulated and un-trustworthy votingregime is not worth privacy and independence of disable voters like me. Sad!

    Becoming AA Local Activist

    When I began losing vision to the point where I needed Rehabilitation, I scanned for centers of activity away from my home in Prescott AZ. State services were hard to find, not reacting on my time scale, and disconnected from the world I knew existed from pod casts and MDSupport. Eventually, I received orientation and mobility training in 2008 while I taught myself about assistive technology thanks to the CSUN Exhibit Halls, then meeting near LAX.


    Living in a “rural” “best place to retire”meant that I performed self-rehabilitation for my vision loss. Existing “blind centers” had closed and vision rehabilitation specialists moved to Tucson due to lack of referrals. Device re-sellers and low vision specialists came to town intermittently. While I was able to afford technology and to learn on my own, I’ve realized too few other area Vision Losers could cope as well. I began a concerted effort to collect links to resources and deliver demos of “Talking Assistive Technology” to an intermittent seminar on “Confident Living With Low Vision”.


    I hope to post more about the progress of a local grant at the Prescott Public Library, dubbed “You Too!”, launching in February 2018.

    Side Interests

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  • What Vision Losers Ask in Searches

    Personal Themes: Planning, mobility, advocacy, citizenship


    In the preceding post on search terms about technology, I recapped some lessons about technology assisting me as a Vision Loser: the wonderful free NVDA scrreen reader; gaining independence using a talking ATM; some technicalities of working with the generally usable WordPress platform; Applemania for assistive technology; and the over-arching theme of TTS, i.e. text-to-speech with synthetic voices. The terms people use to reach my blog expand my range of topics even if I have to make up an interpretation for the searcher’s goal. This post covers more personal than technological topics.

    Terms and Basics: “Legally blind, disability, and personal meaning”

    Search terms used to reach this blog

    • creative activities for the legally blind
    • what is print-disabled.
    • can a legally blind person join the navy
    • legally blind disability
    • culture of disability
    • identity after disability
    • who are the legally blind non-readers?
    • are legally blind people fully blind
    • jobs for us citizen for partially blind
    • forms for legally blind declaration
    • adversity as change in disabilities
    • resilience partially sighted
    • disability resilience visual impairment
    • orientation and mobility trainer
    • the use of technology and loss of eyesight
    • declaration of legally blind

    VisionAware glossary of vision-related terms offers one framework. This topic is certainly a matter of curiosity for both sighted and Vision Losers like me. Frankly, I am rather indifferent to precise terms and refer to myself as blind, partially sighted, visually impaired, disabled, etc. according to how I think the person I’m communicating with will understand and react. More important, I believe, is that the Vision Loser can be matter of fact and comfortable about the situation. Of course, practically speaking, there is that extra box to check on tax forms, that ID card or driver’s license card, the signature line you’re asked for, and many other details of personal and financial transactions. To my knowledge, there is no moment you get a stamp of “legally blind” but rather a process lets you know it is happening. In fact, vision may fluctuate up and down along scales of acuity and bredth of field that was for years my diagnosis of “stable, but precarious”. In fact, I walked through TSA checkpoints with a white cane in one hand and a still valid driver’s license for ID and even once rented a car from Hertz when my companion couldn’t get a debit card approval. No one ever asks “hey, are you legal?” except in bars. And often the situation itself such as bright lights may define whether your sight is functionally useful. What I find more interesting and challenging is planning and navigating the rehab maze. That will be a future post. For now, the above terms just identify some of the ways people look for information.

    Using white, symbol, identity canes

    • white cane low vision
    • how to use symbol cane
    • legally blind safety issues
    • white cane with GPS
    • starting to carry a white cane
    • he walks with white cane
    • define white cane
    • waving cane accident car 2
    • blind man’s Harley: white canes and gend 2
    • slim line white cane
    • do i need a white cane with my vision
    • use white cane
    • white cane adjusting
    • blindness and adjusting to the white can
    • tip white cane
    • symbol cane
    • symbol cane for low vision
    • the cost of not using my white cane
    • blind woman walking with white stick
    • white stick and drivers have to stop
    • using the white stick
      safely

    • no sidewalks for the disabled
    • measuring for white cane
    • using an id cane
    • emotional response to using a mobility cane
    • partially sighted use of white stick
    • white cane technologies

    Terminology: identity cane in U.S. called symbol cane in U.K. and differs from ‘long cane’ used for practical mobility. Colors also may differ internationally, white in the U.S.


    Back when I was starting to require mobility assistance, I wrote about the values of using an Identity Cane. This instrument was a puny stick valuable for poking around and showing others of my disability, but wasn’t functionally useful for walking or climbing stairs safely. Due to the sorry state of social services in the U.S., notably retirement-focused Arizona, it took a long search, months after I really needed help, to find an OMT (Orientation and Mobility Trainer). Gifted from the state with a $35 sturdier cane matched to my height and walking style, I gratefully received a few lessons in waving the cane and negotiating street crossings.

    Here’s the answer to the basic question. You use the cane either tapping or sweeping ahead to tell of rough surfaces, dips, curbs rocks, people’s feet, etc. Meantime, using residual vision, you watch for upper body hazards, like trees, mailboxes, street signs, elbows, etc. Climbing stairs, I use the cane to tap each step then sweep when I think it’s a landing, with bottom steps being the most treacherous. Crossing streets requires far more strategies of listening for and watching turners and signal timings, with the cane displayed or waved to attract drivers’ attention. That
    is how I do it, probably not completely according to rules, but I haven’t been to the Emergency room in years. Note: as to measurements, this does require the help of an OMT person watching you and your own personal experience with a length that feels comfortable. It’s a matter of a few inches more or less. Furthermore, at first your arm gets tired so a few trial lengths may be affected. My OMT gave me two specific useful pieces of advice: (1) avoiding a nasty step on the path to my lifelong learning classes and (2) make yourself “big” and noticeable at intersections.


    My current problem is actually when people try to help and distract me from the synchrony and concentration of using the cane. Often companion walkers get in a hurry or talking and tell me something like ‘5 steps’ when there are are 4 or 6 or, never matter, let me take the steps at my own pace and style. Most of this training is simple but just requires someone to nudge you out and help build confidence, then practice and learning one’s own mistakes and recovery strategies. This is a difficult interpersonal issue as to how to refuse help as well as when and how to ask for assistance.


    Another concern is becoming a hazard myself, like tripping a shopper looking at grocery shelves. Or tangling canes when walking with someone with their own mobility difficulties. And, I’m currently having a real phobia for street crossing, with too many instances of drivers entering the crosswalk a few feet away and just plain realization of the dangers of inattentive drivers in a hurry. Now, we need a national law to install yet another electronic gadget in cars, receivers from a cane telling drivers we’re around — like your GPS might say ;blind pedestrian at corner waiting to cross Willow Creek. Please wait’.

    Accessible websites and advocacy

    Terms asking about accessibility

    • “heading list” + accessibility
    • computer curb cuts wikipedia
    • bad accessibility websites
    • page layout of whitehouse.gov
    • sites with bad accessibility
    • image alt tag checker
    • how do i find my alt tags for my picture
    • headings accessibility test
    • universal design for web applications we
    • pdf crippled
    • Google book search accessibility


    It comes with the territory that something in society makes a Vision Loser feel like a real loser, for avoidable reasons. Those ‘advocacy juices’ start to flow, you learn why social practices are so harmful, find and apply constructive advice, rationalize compromises, use mistakes as educational opportunities, and generally contribute to the betterment of society. Well, that would certainly be nice but if it were that easy a few active complainers could clean up the messes in society that hamper our ability to operate like everybody else. For me, with my lifelong exposure to the Internet, web accessibility is a perfect advocacy focus. For others, safety or OMT or low tech devices or public transit or rehab or costs might blend professional backgrounds and advocacy missions.


    This is my major criticism of inaccessible web sites. If only headings were used to organize and label page parts, screen reader capability to navigate by headings could be fully utilized. Literally hours of wasted time extracting mental maps of pages or tabbing around the wrong lists could be avoided. Indeed, I think failure to use headings is a root cause of many accessibility problems, e.g. lists of unrelated links, maintenance messes, … When I see a page using an ‘h4’ only, I know page authors don’t understand separation of content and presentation nor are they using established progressive enhancement engineering processes. My recommendation in my complaint to site owners is to attend accessibility courses, read myriad blog posts, track #accessibility and #a11y on Twitter, and read Chisholm and Mays ‘Universal Design for Web Applications’. Other culprits, however, are web page editing and content management systems that, hopefully, will soon be superseded by projects like Drupal with accessibility as an important selling point. H1, H2, H3,… is so fundamentally sound for both writing and reading web pages.

    Citizenship and Electronic Voting

    Terms

    • the nitty gritty of electronic voting

    I wrote about my experiences in the 2008 primary and national elections with a generally favorable impression of the usability of the voting tablet. However, voices sped up or slowed down and I had no way of validating the printed output. The voting system vendor Premiere Election Systems is now defunct, with a rather poor history of counting accuracy complaints. Who knows what’s next for this autumn’s national and local elections. It would be great to have a more common interface among similar devices: voting, ATM, store check-out, remote controls, thermostats,… Common functions include: navigation, voice control, selection, confirm/cancel, etc. for users and various administrative setup of ballots, etc. Foremost is that ‘all things should talk to users’ and eventually hold on-board speakable manuals and environmental information. Just
    wishing…


    My main message on citizenship is that vision loss should not be a disable for citizenship but we have to be take the initiative to make the voting experience productive. For some people, independence and privacy are not big issues, so taking a sighted person to mark you ballot feels fine. For others, like me, I want to stretch the system and use voting as a teachable moment for family, friends, and community. That’s a tall order but legally mandated. For U.S. citizens now is the time to find out how you can vote in the upcoming elections, like calling or visiting local election boards. This was a good experience for me and even helped the election officers to watch me at work.

    Remembering Sputnik: Just a memoir moment

    Terms used to reach this post

    • impact of sputnik on mathematics
    • how did sputnik affect America mathematics?
    • how did Russia create sputnik first
    • sputniks effect on the public
    • how did sputnik effect the future?
    • political sputnik
    • how did sputnik effect public education
    • how did sputnik affect education
    • world effects of sputnik
    • sputnik tv public
    • bay of pigs then sputnick song
    • computing arpa “von braun”
    • sputnik lead to modern technology such a
      space race 1950’s and military industrial 1

    This topic has nothing to do with vision loss or accessibility but rather is a memoir and personal history of Sputnik. For many scientists and technologists in our 50’s and 60’s Sputnik was a notable national event (1957) that precipitated funding for and attention toward math and science education. Summer institutes for high school students and teachers, fellowships, and, drum roll, DARPA and the advent of the Internet. Our Social Media class has proposed lifelong learning activities where we collect, post, and record our experiences and related materials for our progeny and educational systems. Amazingly, most of us had little American history covering WWII, Cold War, etc. just lived through it haphazardly. Today’s students also don’t get much modern history, so our event recollections, like the NPR story Corp project, might provide legacies and primary materials.

    Thanks for asking!!

    Search terms provide really useful feedback.

    Resilience: Bouncing Back from Vision Loss

    Definition: Resilience: : an ability to recover from or adjust easily to misfortune or change
    Miriam Webster


    This post assembles some thoughts on resilience in adjusting to vision loss. Sighted readers of this blog will learn more about how to help Vision Losers with their various challenges. Visually impaired readers may glean both encouragement and practical tips to facilitate a reliant approach to vision loss. Three books are referenced: Resilience by Elizabeth Edwards; A Sense of the World by Jason Roberts; and What Blind People Want Sighted People to Know about
    Blindness’ by Harry Martin. This post builds on emotional themes from the past 2 years.

    Book: Resilience as Articulated by Elizabeth Edwards


    Listening to the May 21 Diane Rehm interview with Elizabeth Edwards on her new book got me thinking about the factors that affect my personal resilience regarding vision loss. Let’s forget the modifier “easily” in the above definition but consider success measured in timeframe’s of months and probably other units relative to individuals, such as employment, relationships, or education. The main point is that some people seem more resilient; now, why is that?


    Edwards is out there talking about her adversities because she has a limited life span in which she believes her testimonies will positively affect others. That worked for me. Her loss of parents is, of course, common to all of us, in my case, a mother’s 20 year battle with lupus and crippling arthritis while raising three children and helping her own parents. Edwards lost a 16 year old son in an automobile accident, trusting his ability to drive in slightly challenging situations, the feelings I still face with 20 somethings and remember from my own youth. Her unusually unpleasant and public problems with a philandering politician husband while fighting cancer even under the best possible financial basis are not what anyone wants to contemplate. Contrasted with early death, vision loss seems less of an adversity and more like a life alteration.


    So, how did Edwards survive?
    Well for one thing she finds it helpful to use her public position to talk and inspire others. Another approach is to make a major life change, like having an additional pair of children after the death of one. For her, now, the source of happiness is her start up furniture business where she has a total different framework of expertise, decisions, and colleagues.


    I’ve written about energy management in the context of my Vision Loser tenets. Assuming one isn’t the type to just sit around in an adversity like vision loss, it’s interesting to examine what generates or consumes or wastes personal energy. Edwards so clearly expresses her energy rising from her furniture business in both the Diane Rehm interview and her book. I suggest that we introspect for what makes our energy levels ebb and flow, often evident in our -voices. Co-incidentally, our heroine interviewer Diane Rehm exhibits her own resilience for voice loss.

    Book: The World’s Greatest Traveler, circa 1840

    Jason Roberts’ book ‘A Sense of the World’ was recommended to me by a book club member. In a nutshell, British youth James Holman follows his mysterious vision loss in his early twenties with a lifetime of adventures becoming dubbed ‘The Blind Traveler’. Travel in that time period of the early 1800s is horses, coaches, boats, and feet with no way to make reservations at a motel chain or stop at fast foods at the next intersection. For sure, the travel stories are interesting, especially in Russia and France. And this is against a backdrop at home of inhospitable social treatment of blind individuals.


    So, how did this blind man achieve his adventures of traveling 250,000 miles on his own. Actually, the book doesn’t describe much of what must certainly been some trying times, but here are a few factors. First, Holman had already accomplished one career in the British Navy, starting at age 12 and rising to a captain around age 16. His character was formed and he had just plain toiled very hard during his teens while France, Britain, and the U.S. battled politically and commercially. This gave him a status of officer and gentleman throughout his life, making him ever more welcome as he seemed to have accepted his vision loss and developed cheery manners for gaining help from others. Second, he found a really great gig in a philanthropic support for unfortunate naval officers, including rooms near Windsor and a bit of stipend and community. Third, he always stood out with his cane and blindness attracting attention and help. And fourth, he had a mental knack for geography and so the rigors of travel were endurable in the short run because he never seemed totally lost.
    . Finally, he had a cute way of tethering himself to the moving carrier for exercise and escape from passivity.


    Holman had established status as a paraprofessional who had studied chemistry and medicines at Edinburgh and his father’s pharmacy. In one travel saga, he carefully packed and memorized locations of a variety of medicines, anticipating that nobody could read the label, him from lack of eyesight and others not speaking the label language. This return to his hard won education and training to remain practically valuable to himself and others must have exhibited and facilitated resilience.


    This is definitely an enjoyable book with a few additional lessons when reading and thinking about resiliency. Today with all our technology, we might not be able to get ourselves anywhere near the adventures of Holman. Logistically, we might feel obligated to gear up our GPS, WIFI for weather, and download GB of reading materials. Just packing all our adapter cords is a challenge. Moreover, safety is frequently a barrier as we face … And help along the way is often problematic. I am often asked if I need help when I pace around an airport. Sometimes I am trying to sort out the restrooms but often I just want a little exercise, but people sure think I’m lost. Even worse, occasionally people grab my arm and force me to lose balance if it looks like I’m coming too close to a chair or potted plan. Training strangers to be helpful and not hurtful just to carry on with simple travel necessities is a lot harder and more stressful than it might seem. .


    What were the technologies for reading and writing in that time period?
    Holman made part of his living from writing travel books, indeed invited into the Royal Society as well as battling another jealous and less talented writer. As described, he used a writing device of wires and carbon paper that could be transcribed later and free him from dictating. Now, continuing handwriting when you cannot see what you write is a skill I really admire, as I can barely sign my name!

    Book: What Blind People Want Sighted People to Understand about Blindness

    I find this self-published book by Floridian Harry Martin interesting in many ways but mainly as a mission I wish I could accomplish in my own life with my confusing states of eyesight and changing skill sets. Martin lost vision in his 30s and took full advantage of services provided for veterans. He doesn’t talk much about technology, but rather emphasizes relationships.


    One illustrative discussion is how to tell somebody what you do, and do not, see, especially if they haven’t asked. Sure, this is a painful topic, probably more so for the sighted than the well-adjusted Vision Loser. It’s often difficult to understand how a person cannot see the food on a plate, suffering perhaps an unfortunate confusion among horseradish, mashed potato’s, and roast beef. Yet that person can walk along a contrasting sidewalk with speed and assurance. This consistent ambiguity is a routine stressor for the visually impaired.

    Martin describes many aspects of mobility training, including living with a guide dog.
    It’s not clear if Martin has any employment history as disabled but bases much of his social experience on community interactions. This author has used his time, energy, and organizational skills to assemble insight from many other blind people to complement his own experience.


    I was especially grateful to feel included as a person with considerable residual eyesight but requiring the stamina and adjustments of print disability and mobility limitations. I also find it useful to know the extent and types of training that are available in regimented rehabilitation settings, way out of my league of experience with meager social services.

    My Resilience experiences

    It wasn’t until listening to Elizabeth Edwards talk about her life and book with the “national treasure” interviewer Diane Rehm that I could put a name on some of my own thinking. Indeed, a therapist tells me, “psychological resilience” is an important and well documented subject, especially related to childhood traumatic experiences. There, a “cookie person”, some one, just one person, taking an interest in a troubled child is often the most significant factor in how well children survive.

    My bounces from interviews and books

    Looking back 3 years to my “disability declaration day”, I can identify two major factors that moved me ahead. First was fortuitous listening to podcasts by author Susan Krieger on Dr. Moira gunn’s Tech Nation and on KQED Forum. I felt an instant recognition “yeah, vision loss in late career years, but look how she’s turned it into a positive personal and professional experience”. Although Krieger’s vision loss was unexpected and mine was anticipated for more than a dozen years, I got a sense of where I was heading. Krieger’s generous demonstration of her reading and writing equipment also provided me information I had not found available in my own community, and with the authority of her own written words.

    The second factor for me was Bookshare.org. As soon as I could legally check the box for print disability, I took the simple authorization form to my optometrist, who faxed it in and within a matter of days I was registered at Bookshare and downloading. As soon as I realized I had loads of books I’d never have to pick up or return to a library outlet, no longer an easy trip for a non-driver, I really felt comforted. Then came a tangle of experiences with technology for reading, first a PC software book reader where I realized it was tough to read in bed with a Toshiba laptop. Then I investigated CD DAISY readers and ran across the APH Bookport on which I have since read hundreds of books. Bookshare’s newspaper outlet via NFB News Line enticed me to buy the Levelstar Icon Mobile Manager which provides hours of email, RSS, podcast, news, bookshare, and, recently, Twitter pleasure. Ironically, I’ve never managed to get paperwork into the NLS government provided service and remain uninspired by DRM and special equipment hassles.

    But, oh, those social services


    So, my passage into vision loss was relatively easy, illustrating resiliency from my technology fluency which lead to outreach beyond my current network. It’s true that to this day I have received very little help from social services which are directed to people in worse shape than I am, either financially or emotionally, often from aging. The one service that made an enormous difference was long cane training that followed my Identity Cane adoption and reflection on changed realization as a disabled person. This training and $35 device is absolutely essential for safety and mobility and only a supremely ungenerous society could deny its citizens access to safety. However, that’s how smaller, richer communities operate, as I compared with Southern Arizona Visually Impaired services.


    For me, the greatest lesson in resilience in all of the above is that the individual must find a way to move ahead, action to couner the sense of loss, and immersion into the process of change. One goal of this blog is to display how well technology can provide that momentum and a range of partial solutions. This should motivate all of us to reach out to baby boomers who are technologically adept but not yet exposed to assistive technology. Note that the traditional low vision services and medical professions do a poor job, continuing to push optical solutions when audio is more appropriate.

    I often read on MDSupport.orgabout the extensive and ongoing treatments for wet macular degeneration that delay and mitigate the effects of MD. I wish more people were aware of, and starting to practice use of, assistive technologies before what must be exhausting bouts of treatment. I’m convinced that medical insurance battles and the ups and downs of continued series of injections would have sapped my resiliency.

    Now, there are also the daily bouts that require bouncing back. The hardest slaps for me are where I feel “professional betrayal”, like computing websites that really suck at accessibility. I also feel a twinge of demoralization when I am driven through a major intersection that I fear to cross walking because it lacks warning signals and is frequented by drivers saving a few seconds on there way to nowhere. Lack of public transportation and a richly designed community center reachable only by driving sadden me at poor public planning. But that’s another purpose of this blog, to do whatever I can to explain, illustrate with my own experience, and persistently nudge and complain. I never realized how much effort and precious energy went into activism, especially if it’s not a natural part of one’s personality.


    I realize I’ve complained about lack of social service that are unevenly distributed across the U.S. Were I residing near a larger city I’d be attending more daily living classes and would have received far earlier mobility training. For me, this isn’t asking for government handouts but rather bemoaning the lack of trained personnel available to hundreds of thousands of people off the rehab grid, still active but needing different training. I simply cannot imagine what it’s like to be resilient without technology. Even ten years ago, I would have been unable to escape community limitations via technology.

    Yet, I keep returning to my deepest appreciation for a $35 white stick and a few lessons from a part-time mobility trainer. Amazingly to me, the cane provides an altered sense of body location and control that in fact is a different sense of sight. Moreover, unfolding the cane causes my mind to click into independent but disabled mode, thinking every moment about what I cannot see. Also, reluctantly, I feel that I am now a symbol of both need and resilience.

    Book Links

    All books are available to members on Bookshare.org.
    Note: I link to Amazon as an easy way to buy these books. But please do not buy the Kindle reader until
    Amazon and universities stop discriminating against blind students. The issue here is that the Kindle has not been fully equipped with text to speech in its menus and operations so that all students have equal access to text books. Even then students who cannot physically hold and manipulate buttons will be left out.

    1. Elizabeth Edwards ‘Resilience: Reflections on Dealing with Life’s Adversities ‘
    2. Jason Roberts ‘A sense of the World: How a Blind Man Became the World’s greatest Traveler’ and
      NPR ‘Tales of a Blind Traveler’ review

    3. Harry Martin ‘What Blind People Want Sighted People to Know About Blindness

    Related Posts from ‘As Your World Changes’


    1. 5 Tenets for Adjusting to Vision loss


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


    3. What’s a print-disabled reader to do? Bookshare!


    4. Grabbing my Identity Cane to Join the Culture of Disability


    5. The Pleasures of Audio Reading


    6. Aren’t we Vision Losers lucky?


    7. Resources, support, and reality check for macular degenerates


    8. Consolidating links in Prescott Arizona about vision loss

    Thinking about Blindness, Risks, and Safety Trade-offs

    Facing safety trade-offs through risk management


    It’s time to structure my wanderings and face denial about the special problems of dangers of living with partial eyesight. This post starts a simple framework for analyzing risks and defining responses. Sighted readers may become aware of hassles and barriers presented to Vision Losers who may learn a few tricks from my experience.


    Life is looking especially risky right now: financial follies, pirate attacks, natural disasters, ordinary independent activities, … A Vision Loser needs special precautions, planning, and constant vigilance. So, here I go trying to assemble needed information in a format I can use without freaking myself back into a stupor of denial.

    Guiding Lesson: Look for the simplest rule that covers the most situations.

    Appeals to experts and clever web searches usually bring good information, lots of it, way more than I can use. I discussed this predicament in the context of Literacy when I realized I couldn’t read the pie charts sufficiently well to understand asset allocations. I had 500 simulations from my “wealth manager”, projections to age 95, and my own risk profiles. But what I needed was a simple rule to live by, that fit these, now absurd, models, like

    “Live annually on 4% of your assets”.

    Another rule, one I obey, that could have saved $trillions is like:

    Housing payment not to exceed 1/3 Income.

    Such rules help focus on the important trade-offs of what we can and cannot do sensibly rather than get bogged down in complex models and data we can’t fully understand or properly control. If we can abstract an effective rule from a mass of details, then we might be able to refresh the rule from time to time to ask what changes in the details materially affect the rule and what adjustments can cover these changes. We can also use generally accepted rules to validate and simplify our models. This is especially important for the partially sighted since extra work goes into interpreting what can be seen and considerable guess work into what’s out there unseen.


    I need comparable safety rules to internalize, realizing their exceptions and uncertainty. Old rules don’t work too well, like “Look both ways before crossing the street”. also listen, but what about silent cars. Or “turn on CNN for weather information” if I can’t read the scrolling banners.

    Background from Software risk management


    When I taught software engineering, the sections on project management always emphasized the need for Risk Management in the context of “why 90% of software projects fail”. This subject matter made the basis for a good teamwork lab exercise: prioritize the risks for a start up project. I dubbed this hypothetical project Pizza Central, a web site to compare local pizza deals and place orders, with forums for pizza lovers. Since all students are domain experts on both pizza deliveries and web site use, they could rapidly fill out a given template. Comparing results always found a wide divergence of risks among teams, some focused on website outage, others on interfaces, some on software platforms. So, one lesson conveyed among teams was “oops, we forgot about that”. My take-away for them was that this valuable exercise was easy enough to do but required assigned responsibilities for mitigating risks, tracking risk indicators, and sometimes unthinkable actions, like project cancellation.


    I am about to try a bit of this medicine on myself now. Risk is a complicated subject, see Wikipedia. I’ll use the term as “occurrence of a harmful event” in the context of a project or activity. The goal is to mitigate both the occurrences and effects of these nasty events. But we also need indicators to tell when an event is ongoing or has happened. Since mitigation has a cost of response both to prevent and recover from events, it helps to have prioritization of events by likelihood and severity. So, envision a spreadsheet with event names, ratings for likelihood, severity, and costs, perhaps with a formula to rank importance. Associated with these events are lists of indicators, proposed mitigation actions with estimated costs. This table becomes part of a project plan with assigned actions for mitigations and risk tracking awareness across team members as a regular agenda item at project meetings..

    Risk analysis for my workout/relaxation walk


    I will follow this through on the example of my daily workout walk. I do not use my white cane because I feel safe enough, but really, is this a good tradeoff? Without the cane, I can walk briskly, arms swinging, enjoying shadows, tree outlines, and the calls of quail in the brush. The long white cane pushes my attention into the pavement, responding to minor bumps and cracks my strides ignore, and there’s even a rhythm to the pavement that adjusts my pace to a safe sensation. I would not think of walking without my guiding long white cane on a street crowded with consumers or tourists but this walk covers familiar terrain at a time frequented by other recreational walkers. This situation is a trade-off unique to the partially sighted, who only themselves can know what they can safely see and do, living with the inevitable mistakes and mishaps of the physical world.

    Here are a few events, with occasional ratings on a 1-10 scale. For this application, I feel it’s more important to ask the right questions, albeit some silly, to surface my underlying concerns and motivate actions.

    1. Event: Struck by lightning, falling tree, or other bad weather hazard

      <Indicators<:Strong winds, thunder, glare ice

      <likelihood<: 8, with walks during

      <Severity<: 9, people do get whacked

      <Mitigation Actions and costs:<

      • -7, look for dark clouds. but Can’t see well enough in all directions over mountains
      • 0, Listen for distant thunder, also golf course warning sirens
      • -1, check CNN and weather channels, but hard to find channel with low accessibility remote and cable box, also reading banners and warning screens not always announced. FIND RELIABLE, USABLE WEATHER CHANNEL, ADD TO FAVORITES
      • Ditto for Internet weather information, but I never am sure I am on a reliable up-to-date website or stream, especially if ad supported
      • Ditto for Radio, using emergency receiver. ACTION: set up and learn to use.
      • For ice patches, choose most level route, beware of ice near bushes where sunlight doesn’t reach for days after a storm, walk and observe during afternoon melting rather than before dusk freezing

      Summary: I should keep emergency radio out and tuned to a station. ACTION needed for other threats than weather, also.

    2. Event: Trip over something

      <Indicators<: Stumbling, breaking stride, wary passers-by

      <likelihood<: 5,

      <Severity<: 6

      <Mitigation Actions and costs:<

      • 0, Follow well-defined, familiar route with smooth pavements, rounded curbs – I DO THIS!
      • Never take a short cut or unpaved path.
      • $100, wear SAS walking shoes with Velcro tabs, NO SHOE LACES to trip over
      • 0, detour around walkers with known or suspected pets on leashes, also with running kids or strollers.
      • 0, take deliberate steps up and down curbs, use curb cuts where available. Remember that gutters below curbs often slope or are uneven. Don’t be sensitive that people are watching you “fondle the curb”.
      • Detour around construction sites, gravel deliveries, … Extra caution on big item trash pickup days when items might protrude from trash at body or head level.
      • Detour around bushes growing out over sidewalks, avoiding bush runners, also snakes (yikes)

      Summary: I feel safe from tripping now that I have eliminated shoe laces and learned, the hard way, not to take curbs for granted.

    3. Event: Hit by some vehicle

      <Indicators<: Movement, perhaps in peripheral vision; noise

      <likelihood<: 5

      <Severity<: 7

      <Mitigation Actions and costs:<

      • 0, stay on sidewalks, if not overgrown by brush
      • 1, walk when others are out and about, expecting auto and bicycle drivers to be aware
      • find a safe, regular road crossing, away from an irregular intersection, and jay walk. Is this wise?
      • Do not walk at times of day when sun may blind drivers, e.g. winter days when sunsets are long and low
      • Do not trust ears. Bicycles are quiet on smooth pavements, move rapidly down hill. Also hybrid cars may run silently.
      • Halt completely when in the vicinity of noisy delivery trucks or car radios. Blending hearing and seeing requires both be at maximum capacity.
      • Remember that eerie white cross memorial indicating a dangerous intersection with cars coming around a blind curve and often running stop sign. Also shout at speeders and careless drivers.
      • REJECTED: Use white cane to warn others I’m limited at seeing them. I don’t think the white cane adds more warning than my active body motion.

      Summary: I am currently using 3 safe routes, must not let mind wander at each intersection and crossing. ACTION: sign a petition for noise indicators on silent motors.

    4. Event: Getting lost

      <Indicators<Unfamiliar houses, pavements, in intersections

      <likelihood< 1,

      <Severity<: 1

      <Mitigation Actions and costs:<

      • Follow same routes through established neighborhoods
      • $1000, get GPS units and training. Consider when I move and need to define new walking routes.
      • Beware or boredom to tempt alternate routes.

      Summary: I used to get lost, turned around in neighborhoods, no longer take those excursions. 3 regular walking paths will do.

    5. Event: Cardiac attack

      <Indicators<: frequent stops, pain, heavy breathing

      <likelihood<: Hey, that’s why I do these walks, to build breathing stamina at an altitude of 5000 ft with several serious up and down hill stretches.

      <Severity<: Something’s gonna get me, hope it’s quick.

      <Mitigation Actions and costs:<

      • Exercise regularly to maintain condition.
      • Checkup when Medicare allows and physicians are available (thanks U.S. health care system)

      Summary: Not to worry as long as walks feel good.

    Risk Management Summary

    I choose this walk as my primary exercise activity, have integrated it into my daily routine, and generally feel better as well as safe. Eliminating shoe laces removed a major stupid cause of minor stumbling and potential falls. I have avoided unsafe and confusing trajectories. My main fears are: Fedex or UPS delivery trucks, fast downhill bikes, pet greetings, loose children, persistent brush-hidden ice patches. My cane would, in this environment, change attention from moving objects toward pavement which is smooth and uncluttered. The cane would do little to warn off threats — they either notice me or not. I choose to balance my partial sight used cautiously with improving listening skills and opt to walk faster and more comfortably without the leading cane and its frequent catches in cracks and grass.

    Actions: While walking may not be the main reasons, I must gear up with that emergency radio for other threats. More generally, I must learn about emergency information sources that fit my vision capabilities.

    References on Risks

    1. Wikipedia on Risk
    2. How to for risk management
    3. Risks to the public using software, decades of examples of software-related events and management as risks
    4. ‘Nothing is as Simple’ blog, a phrase to remember and examples
    5. Previous post on Literacy and reading charts, how I discovered I couldn’t read pie chart data
    6. Previous Post ‘Grabbing my Identity Cane to Join the Culture of Disability’. I have now progressed through orientation and mobility training to using a longer cane with a rolling tip.
    7. Emergency preparedness checklists for Vision Losers — TBD

    Listen up! Technology, Materials, and strategy for non-Visual Reading

    My adoption of the audio reading mode

    This post describes how this vision Loser reads on a daily basis. sighted readers of this blog should gain some insight into alternative ways technology delivers what you read visually on printed pages or screens. Those now in transition with vision loss can get a snapshot of a specific combination of reading technology, web delivery systems, and kinds of reading materials.


    I consider myself an effective reader at this point in my vision loss. Three years ago I would have had no way of describing how I would be reading now. Partially, this was from the inability to know how my sensory apparatus would be working. For the record, I see pages where the text is mostly smudges. Computer screens have reasonably clear outlines with text that can be enlarged on a monitor or text size setting but remains often more like those irritating CAPTCHA boxes, all wobbly and sliced up. Partial sight can be minimally used by magnification, contrast, and eccentric viewing but for any reasonable way of consuming information, one must step over into the audio world. That means a screen reader or self-voiced reading devices, all using synthetic speech. After 2 years of hard work, a lot of technology evaluation, and countless hours of practice, the audio world now seems natural. I have no problem reconciling myself with this way of reading for the rest of my life, trusting that my hearing and hands will not give out on me.

    My portfolio of reading devices

    Another reason I would not have been able to predict how I read now, in 2008, is that several products I use constantly had yet to be invented in 2005. Processing power, miniaturization, wireless, and blind-driven inventiveness have produced a stable of devices that complement the PC (or MAC, whatever).

    • The Levels tar Icon is a screen-less Linux hand-held that reads all its menus and text as I cycle through email, news, and web content. The Mobile Manager hand-held fits into a docking station with keyboard and augmented speakers, power, and ports. I use the Icon for email by pop3 from gmail, occasional recordings,RSS feeds of news and podcasts, web browser, and special access to books and newspapers.
    • The American Printing House for the blind book port is another hand-held box with its only user interface a keypad, requiring ear buds or external speakers. Its memory card is loaded from a PC with books, mp3 files, and text. The book port is designed for easy navigation through books and its file systems. Like the Icon, it can also record memos. The APH book port is currently available only used, as the upgrade is having manufacturing problems. I use the book port primarily for books and lengthy synthetic spoken versions of files. A competitor Humanware victor reader stream offers similar reading capabilities, but I have never become comfortable with its navigation techniques, primarily just not my way of working.
    • The latest marvel of reading technology is the > Kurzweil NFB reader that has shrunk the scanner-OCR-reader architecture onto the Nokia N82 platform. well, it could be used also to make phone calls if attached to a phone service. This little guy is great for on-the-fly reading like room service menus, TSA notices stuffed in your luggage, mail, and printed pages lying around. one of the greatest frustrations of print disability is the difficulty of performing normal inter-human transactions where a sighted person hands you a business card or information sheet or agenda and you need that information to take the next step toward your goal. Another frustration is the profusion of junk materials surrounding the little piece of critical action, like amount to pay on a bill, but that’s where family members can be called upon. The KNFB Reader illustrates Kurzweil’s mantra that exponentiation dominates linearity , urging us to think about potentially using far more computing power to overcome our neural deficiencies.
    • The NVDA screen reader , discussed in earlier posting on selection of NVDA , is my PC work horse. It shows amazingly high quality and functionality for a young product, deriving from its free, open source origins driven by a generation of blind tech savvy developers and users seeking an alternative to the proprietary screen readers forged into the rehab-industrial complex. Note: I donate to NVAccess. Unless you need specialized scripts for complex or barely accessible products, such as many enterprise data management systems, NVDA will do well, especially in conjunction with Mozilla products.
    • Another supporting tool necessary for full reading is the Kurzweil 1000 for simplifying and managing scanners, which may have inaccessible and photo-oriented interface managers. Scanned material for submission to a service like Bookshare.org requires considerable editing that is well supported in K1000. I used the K1000 for general editing and spell checking as well as scanner management. Note that the K1000 has its own nice self-voicing practice to assist its operations and editing.


    So, that’s all new technology I’ve learned in the past 2 years, ranging from my Identity cane to a suite of talking devices.

    Sources of reading materials

    What about the representation of the reading materials and where to they come from?

    Human narrated audio books

    Of course, we are all familiar with humanly recorded audio books, basically a long stream of bits, possibly with some embedded strings that reader technology can identify as section or information markers. The blind-serving organizations like NLS (National Library service) has long provided human narrators, recording media, reading tools, and a library coordinated distribution system. I personally have not tapped into this because the NLS format has only recently become available on the Icon, and, besides, I have a little problem with its paperwork to get myself certified. audible.com is the commercial system integrated with book port and soon the Icon, but I have yet to find the book that compels me to subscribe.

    Note added December 08: Other sources of narrated materials are available in podcast format. Librabox podcast delivered book chapters is prolific and well done. Assistive Media Magazine readings extracts popular New Yorker style articles. State services like Arizona Sun Sounds offers books, newspapers, government information.

    DAISY, Digital Talking Books and Bookshare.org library

    The core technology for representing reading materials is XML, for extended markup Language, in the family of HTML for web pages. Text files have human or automatically added tags, like <title>,which the reader tool interprets for the user, which could be another computer or a human. A special version, DAISY (Digital Accessible Information System) is the interchange format for books. I get most of my books from bookshare.org which uses a copyright exemption to allows volunteers and publishers to contribute texts for distribution to members certified with a print disability who agree not to distribute further, but with free choice of reading tools and locations of materials. For me, this meant I could rebuild my personal library faster than I could donate or throw away my printed books.


    The beauty of the bookshare distribution system was immeasurably enhanced by the Icon’s integration of a book search and download capability. If I hear about a New York Times best seller , a classic or a Reader’s choice, I can pull up the Icon book search by title or author, automatically log on to bookshare, download the book, if available, and start reading — in about a minute! Of course, if the book is not available, I can look for an audio at the public library or a commercial service or get a printed copy to scan. Indeed, I am now contributing books selected by my monthly AAUW book club, which takes several hours of work as I learn to expedite scanning and editing with the Kurzweil 1000 system. But it’s gratifying to know this process offers good readings to thousands more people like me. I carry my entire library on my easy reading Book Port categorized as Fiction, Biography, etc. and can also search these books in full text format. This pipeline of easily retrieved and stored books has truly broadened my reading choices with more than enough entertainment, enlightenment, and information.

    Not yet available digital book collections

    What about all those mass scanned book collections by Google, amazon, Microsoft, etc.? And those PDF e-books? too bad, most of these are not available to me, or very hard to use. The popular Gutenberg and Google book search do provide out-of-copyright materials, but I personally rarely need these. And, as I commented in post on “seeing through Google book search” , I am limited in my research by the image-only presentation of pages from a book search. While PDF is a nearly universal viewable distribution format, the adobe Acrobat reader is always changing its read out loud capabilities, insists on updating itself every use, and generally makes me feel out of sorts, like “when good technologies go bad”, with apologies to the adobe co-founder who was my grad school office mate. PDF accessibility is such a mixed bag, I just convert all PDF files to TXT and live with what I can get out of the results using the Icon, book port, or screen reader. My pet peeve is the need to convert PDF newsletters into TXT when the content could just as well been delivered as the more easily readable HTML. Like many other people, I thought I could buy an ebook and apply a synthetic voice reader but this mode of distribution is verboten by DRM (Digital Rights Management).


    Whew, this is getting long, as I inventory my reading experience, but here some the happier parts.

    More news than ever from NFB via Bookshare and Icon News Stand

    As my vision faded so I could no longer read newsprint comfortably, I kept my NY Times subscription to retain access to the web site. I learned to find the sections of interest, like Editorials and business, and navigate a link path while reading the articles I wanted by the Text Aloud browser toolbar. Ouch, was this cumbersome! Now, I use the NFB Newswire newspaper delivery service offered in the bookshare membership and facilitated by the Icon News Stand application. With one “get new issues” click, I have not only the NY times, but also wall street Journal, Washington Post, San Francisco chronicle, economist, New Yorker, and more. All are structured for reading by publication, issue, section, title, and text. this means I can scan and selectively reads 100s of pages of newsprint in a half hour, an unpredictable benefit of print disability.

    Local news, the gaping hole in the infrastructure

    Of course, there’s a down side to news reading in that my local newspaper uses a convoluted content management system that seems to split every article into paragraphs that intertwine with advertisements and obituaries. Luckily, there is an RSS that delivers titles and a city feed that offers more official news, but I have yet to find a way to keep up on local events, even using the radio. This is one of the gaping holes in the information infrastructure for print disabled readers. I avidly track Jon Udell’s blog on strategies for Internet citizens for improving community networked information.

    RSS feeds as supplementary and primary news sources

    Along the lines of the DAISY representation for books is the RSS (real simple syndication) format for feeds that deliver articles and podcasts. This is the key technology for the rest of most of my reading, with over 80 feeds in my Icon RSS client. These bring CNN, Inside Higher Ed, science daily, slate, and many more magazine and news headline style materials. These are complemented by my evolved collection of news, recreational, and technical podcasts. While I really do not know what I am missing, I am thoroughly comfortable that I am keeping up with technology trends through itconversations.com with its interviews with innovators, technation, IEEE spectrum, etc. Rarely is a podcasts a time-waster and I feel myself obligated to listen to keep up. Similarly, a judicious selection of blogs help me track what’s going on in my areas of interest, including accessibility, podcasting media, and, especially this year,politics.


    Two cool things about RSS are the ability to hierarchically structure feeds and to exchange feeds among readers. If you want mine, here’s susan’s reading sources , a file that can be imported into your choice of RSS reader or cribbed from in a text editor. Since all navigation in the Icon RSS reader is within a tree, I have a hierarchy of News into general, technology, Politics, and science categories, then further in places into trees of blog or other special content. Since feed updating is time consuming, maybe half an hour, the tree structure allows updating only a single feed or group of feeds, e.g. if I need a politics fix late on a Tuesday primary day. Of course, I also have several mailing lists with associated folders in the Icon email client, keeping up on mdsupport.org,book port, bookshare, NVDA, and icon user discussion lists.

    Progressive reading productivity and quality

    How progressive are these reading tools? I have been an Internet user since around 1970s. Indeed I found myself on the mailing list of the very first spam message 30 years ago. I subscribed to and made some embarrassing posts in Usenet groups and mailing lists in the 1980s and 1990s and had my first web page around 1993. To me, this surfeit of information is a natural progression. However, when my beloved Icon had to go to the shop for repair, I realized how important were the advances of the past year. I found the web-based RSS readers clumsy and never did get any setup comparable to my Icon trees, menus, and quick read articles.


    To be provocative, I estimate my reading productivity now, compared to a few years ago, as about 10:1 in retrieving content available via Internet, wireless, RSS and other clients. Once retrieved, I feel about a 10:1 gain in ability to scan, filter, selectively read or listen to the content. Of course, I cannot get everything I need and occasionally rev up the Icon or PC Firefox web browser for searching and surfing. I’ll discuss my feelings about information overload and reading habits and brain plasticity in the companion post on “Hyperlinks considered Harmful”.


    One of the greatest benefits of exploiting vision loss and using these reading tools is that advertising fades into the noise. Given the current economic model for most information services, this makes me a lousy consumer. Well, too bad, I really would like to kick in for a low-cost subscription, say $10, but do not have that opportunity. I’d like to pay $3 for each book I read with funds to the author and publisher, like is occurring for music. But my guilt is assuaged by taking every opportunity to tell in person and virtually about resources I like in hopes that enough people will click the ad links and buy the resources directly. And, much as I love my reading tools, losing vision is costly, nearly $10k for the above tools.

    Advice for both sighted and impaired readers

    so, you still fully sighted readers should now have a sense of how one vision Loser has replenished her reading vessels with forms of content, like DAISY, and tools that you never heard of and would consider primitive compared to iPhones and quicktime. But, if my claim of 10:1 increased retrieval and 10:1 improved reading hold true, this step over into the audio world is hardly a loss of reading capability. Limited access to certain kinds of material are offset by opportunities to access special content not available to the sighted world, like the bookshare library and the NFB News Line.


    For those losing vision, as I have for three years, I urge you to begin tapping into this audio world sooner than your denial and hopes might lead you. Try using a free screen reader and audio conversion tools and get used to gaining more information by audio whenever you feel discomfort with your eyeballs glued to your screens. I hope this article assures you there are many ways to adapt your reading styles to meet your needs, and even to find gains you never dreamed of. You might visit a disability services department at a local university or an assistive technology demo exhibit hall. But beware, that the rehab and disability services personnel are themselves grappling with technology learning curves and are locked into vendor distribution practices that lag behind some of the tools I advocate in this blog. A good starting point, whatever your level of sightedness, are the user stories in nextup.com text to speech blog

    For More Information on Assistive Technology

    .

    Consolidating links for Vision Losers in Prescott Arizona

    “As Your World Changes” blog 2008</head

    Consolidating links for Vision Losers in Prescott Arizona

    PermaLink


    January 2008


    Unlike the other essays in this blog, the current post is a link to a resource page about a local community. I have often been frustrated at finding information about events and services, occasionally learning valuable tidbits first from my walking companion, Jack and his dog pack.

    My hope is that other Vision Loser’s in the Prescott area will find useful items and that community members will contribute to this resource.

    Reference

    The Vision Loser’s Guide to Prescott Arizona lists local social services, RSS feeds, and pointers to state and national organizations.

    Lessons from “Twilight”, a memoir by Henry Grunwald

    Looking for vampires??? None here.


    This eloquent memoir precedes our current computing pre-occupations, making a case for the advances we consider in our previous posting ‘Aren’t we Vision Losers lucky?’. The book includes the author’s description of his diagnosis, treatments, and emotional responses along the way. Chapter 2 has a fascinating section on blindness as seen in mythology and literature, identifying our patron Saint Lucy.  This book is especially cathartic for a vision loser asking ‘do I feel or act like that?’ or ‘wow, he expresses my sensations so well. And that makes me feel better to share that feeling.’


    Grunwald developed full blown wet macular degeneration  after his retirement from Editor-in-chief of Time Magazine and a distinguished career including ambassador to Austria. He wrote his memoir of his vision losing experience in the late 1990s following a well-received article published in the New Yorker in 1996. His short eloquent book is available on Bookshare.org, scanned by this blogger.


    In Chapter 10, Grunwald sums up the life-changing effects of gradually losing his eyesight. Hope for a cure never left him, but reality about the permanence of his condition forced him to come to terms with it. Bouts of anger exploded in throwing unreadable magazines across the room. And his family never fully realized the extent  of his loss  until his journalistic report. He frankly describes the concurrent effects of his aging, and realizing its progress, intermingled with losing vision.


    His descriptions of emotional turmoil express  my feelings, as well. I often throw a fit of exasperation when sorting out the junk mail, especially when looking for something important like health insurance.    Since my condition is caused by lifelong progressive myopic degeneration, I feel somewhat smugly exempt from the age-related label but know in my heart that  whitening hair and the slowing gait of a cautious Vision Loser combine to enhance the impression of aging in others and in myself. Hope, which I have never been given by doctors still brims up in me when I hear of progress in stem cell therapies. I spoke once to my retinal specialist about becoming a subject of a clinical trial, and he chuckled  as he informed me that no matching patients as myopic as I could be found for a trial population. Now, it takes a lot to get a grin, let alone a chuckle, from a sober retinal guy, so I gave up on that idea.


    Grunwald expresses well what a profound life experience is vision loss, a force for change that brings us to a level of capability  and adjustment to age-related factors we might have otherwise just passed through without conscious awareness of  the changes or their effects. I personally would not have developed my guiding 5  level philosophy that has helped me sort out not only contemporary but also lifelong feelings. For example, as  Grunwald expresses, we develop a keen appreciation of those things we can see. I  often feel my greatest loss is not seeing smiles, simple accepted personal experiences which I never appreciated, and especially relish in the rare moments I catch one on a loved one’s face falling in the right spectrum of light. I also find myself more aware of my own smile and offer it to others as a conscious gift not as a reflex, whether they recognize my awareness or not.


    Grunwald wasn’t a ‘computer guy’ like us, but he often describes his love-hate relationship with his magnifiers. They are both aids and symbols of loss and regain of power. His electronics use was, in the 1990s, the early days of recorded books and text to speech.   I wonder how this highly literate spirit would react to podcasts, ATT Natural voices, and  reading technologies we enjoy now, more than a decade after the vision loss transition he describes. A man of letters and printed text would surely appreciate the experiences with digital and spoken materials, even at a cost of intervening synthetic manipulation and complexity.


    I bought  ‘Twilight’ well before I was into any noticeable level of print disability, was not ‘out’ to many colleagues,  just experimenting with MDSupport.or  community. Listening now to a book I can not read but know I need helped me gather both courage and humor from a wise older spirit.


    Happily, there is a book interview with Diane Rehm on her WAMU radio show, an inspirational personality encouraging ‘intelligent and civil conversation’. This interview stimulated an open letter from the National Federation of the Blind raising issues about Grunwald’s openness about his visual difficulties and how that attracts negative images of blindness in the press. The letter writer considered him as a suffering soul who would benefit from more integration with blindness organizations like NFB, taking advantage of its valuable Newsline service, then on phone and now available on Bookshare. Actually the book, more so than n the interview, describes interactions with Lighthouse and New York City -based doctors. Listening again to the interview, I sense in Grunwald’s European-accented voice, more world weariness of a life-long journalist, uncomfortable about discussing personal feelings, and not fully conveying the sense of adventure, learning, and self-mockery apparent in the full book.


    Belated thanks, Mr. Grunwald.

    REFERENCES on Henry Grunwald and ‘Twilight’

    Revised to add audio link on July 21 2008