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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  • A Notable, Inimitable Woman: Helen Keller, 1880 – 1968

    Here is an outline of my research for a course on Notable Women last session at Osher Lifelong Learning Institute at Yavapai College. I was fascinated by the question: what happened to the rest of her life after the incidents portrayed in the “Miracle Worker” plays and movies. As my reading progressed to reveal her decades of activist publication and public attention, the deeper question became “how did she cognitively process so many other writings and human contacts into coherent and relevant materials that sustained her spirit and finances?”.


    speaking personally, as I’ve portrayed earlier in this blog, I have rewired my brain to read and write differently without using vision. Now, the Internet and trusty screen readers and RSS clients bring me loads of information, but I still find it difficult to organize even a small article like this post. Keller published many articles in popular publications like “Ladies Home Journal” but she also emoted some very fine rants on socialism, unions, suffrage, and disability civil rights.


    Answering my questions from the resources below, especially the New Yorker article, she: mastered French and German at Radcliffe; read European newspapers; always had personal assistants; selected topics of interest for her human readers to communicate by hand tapping, lip reading, or Braille translation; wrote sections on a Braille typewriter, assembled and edited with assistance; wrote and received copious letters in the style of the time; made friends with Mark Twain, Alexander Graham Bell, and the presidents du jour; traveled extensively; and generally got around a lot. Whew! But still, how does one assemble a model of the world coming without hearing or seeing? The New Yorker article portrays her cognitive functioning as much like poetry or highly flowery narrative. That is, she took in facts and physical object descriptions, asked questions, built a sense of her surroundings, and embellished with imagination constrained by her editorial assistants. Yet, there is such a difference experiencing the situation of labor unions from a film like “Norma Rae” and reading about sweat shops and factory safety mishaps. It still intrigues me that her reality matched sufficiently her colleagues and acquaintances that she could not only participate but also influence her times. Interestingly, some of that interaction came from a silent movie, vaudeville infomercial’s, and an attraction for press attention that vies with modern athletes and actors.


    Yet, that same cognitive generative process caused lifelong doubts in others about her actual abilities versus the influences of Teacher and other assistants. A bizarre accusation of plagiarism arose at age 12 when professional pride and pettiness ran amok over a misunderstanding of originality of a story she told in a letter. Now, today we cannot get college students to differentiate copy-paste research from critical thinking, so one wonders how a 12-year-old could really appreciate the social significance of separating what one is told, holds in memory, and retrieves as a story gift from copyright and issues of attribution.


    Well, anyway, if you wonder how minds work with different sensory limitations, take a look at the documentary on Youtube, the New Yorker analysis, and some of the cited oddball life passages.

    Background</h3

    Other facets not highlighted in documentary and popular bios

    Finally, I think HK would have been great on Twitter, with pithy, passionate expressions of her daily insights, frustrations, and relationships. Happy 5th birthday, Twitter and many thanks to Accessible Twitter for keeping me in touch with the world.

    Disabled? Sorry, *NO* insurance for you!

    In line with current U.S. rumblings about our massively messed up health care system, here is my personal diatribe against insurance profiteering, and appeal for attention toward disability services. I don’t usually post negative stuff or rants, but we’re all angry and my story of disability resilience is part of the record submitted in support for a public option. Other Vision Losers may find comparable experiences and those not yet disabled may gain some insight about life becoming disabled in early retirement before Medicare in these dark ages of private insurance.

    Note: there are many local geographic references, with some Prescott AZ Resources for Visually Impaired.

    Background

    I have myopic macular degeneration, a lifelong progressive deterioration from birth or growth spurt causing elongated eyeballs and correctable near-sightedness until too much retinal atrophy. My last sliver of good vision left in 2005 taking driving, print reading, face recognition, and surrounding detail into a swirling world of haze. Glaucoma onset at age 60 now costs about $800/year in standard meds that control eye pressure. I have had no other treatments since 1998 with cataract removal following extensive surgery for retinal detachment in 1993. I currently have 3 retinal exams per year with the usual tests.


    I am single, not a veteran, did not seek employment after job termination in 2005, preceding my eligibility for employment-based disability benefits by about 6 months. I easily qualified for social security disability at age 63 when I was using COBRA health insurance at about $7000/year.


    I have basically provided my own rehab and general disability support, easily totaling over $15,000 out of pocket. Following legal blindness in 2006 I retrained myself in computer use and began seeking orientation and mobility training (OMT) for navigating with a white canes and crossing streets. After applying to AZ social services, I waited over a year for this critical safety and independence training with only one trainer in the county, who quit from low pay. Eventually, after crying at a local low vision information group, a school special educator gained state certification and provided a few lessons and a $35 cane. I am truly grateful for the trainer who kept me moving forward when I was becoming home bound. Second Sight local rehab and People Who Care provided low vision overviews but covering information I had already learned myself.

    Health “Insurance” to Susan: Sorry, you own your disability until Medicare.

    At end of COBRA in late 2006, I found it difficult to get response from United Healthcare (in Florida) on continued coverage but expected costs over $10,000. AARP insurance rejected me outright because of the 3 glaucoma meds which they would be forced to cover. My professional organization, IEEE, had just suspended its health insurance offerings. I was surprised to find no possible configuration of insurance for an otherwise fit pre-medicare retiree. Turning to a local broker, I found the only choice, at $3500/year, with Blue Cross of AZ which demanded waiver for related eye condition costs. Note that I would have become eligible for Medicare 2 years after admission to social security disability which turned out to be just after I reached age 65 anyway. Isn’t it ironic that the deterioration of a few body cells at the wrong time can alter one’s retirement resources by so many factors?


    Like many people independently “insured”, I but down visiting doctors in expectation that any condition occurring after start of insurance would be considered pre-existing, i.e. subject to rejection or rescission. I was basically only covered for accidents. Ironically, my inability to gain OMT increased my chance of accidents out walking or getting around. Indeed, in 2004, a decorative rock near the Prescott court house sent me to the ER for five stitches at about $1000. Inevitably, disability increases medical costs, even for insured people, if the social context, the physical environment, and safety training are minimal or nil.


    One effect of visual disability is the extreme difficulty of getting usable health insurance information. I’m as Internet adept as anybody, with email since 1977, but the Medicare, prescription drug, and health insurance websites and documents are painful to use, requiring hours of work and absorption of information in memory. Now, I’m good at web stuff, but filling outh pages of forms is beyond my ability, hence I resorted to a local broker to do this for me, accepting their offerings and trusting their advice. Note that I do have personal helpers, in-house teenagers, but not up to handling complex medical forms I cannot read to check. I also felt that prescription drug policies were partially hoax as I could not find a way to match 3 standard glaucoma meds with 165 choices all couched in weasel words. A consumer protection action could well be applied to make all policies simple enough that even a visually impaired non-Ph.D. had a chance.

    My Personal Feelings

    1. The Medicare disability gap, no help for two years, is outrageous. Here is a mature individual adapting their personal life, trying to maintain productivity and independence, seeking but finding only minimal social services, with this gap at the worst possible moment. Who thought of that torture for the permanently disabled?

    2. Social services: rehab are available only if you’re working, want to work, veteran, in school, or really poor. Near retired are on your own. I called everywhere to find OMT and get in touch with local low vision education resources. I was willing to pay for a consultant to guide me at a faster pace, but no such person existed. There were none when I needed them, nada, just a waiting list. Eye doctors refer to low vision specialists, located in Phoenix, who pushes exorbitantly expensive optical devices. Instead, being a technologist myself, I attended an accessibility exhibition in L.A., found podcasts and product demos, and, at a cost of nearly $15,000, assembled my own assistive technology regime. I also began writing a blog at https://asyourworldchanges.wordpress.com to share my experiences with others in the same boat.


      Just imagine how hard it’s going to be on both the services and citizens as more baby boomers lose vision and need both mobility and computing re-training? There are standard occupational and educational training programs but the jobs are ill-paid, yielding much better services in coastal cities. How many low vision people, other than me, will you see walking around Prescott, although an estimated 9000 in Yavapai County?
      At this point, the most valuable service I’ve received is that $35 cane and a few lessons at crossing streets that, of course, lack audible signals or driver warnings. I truly believe that white cane is my ticket to the only freedom I can have. There is no viable public transportation, So I’m often using taxis if rides are not available. And notice that the Community Center, within walking distance of my home, has no sidewalk access.


      In contrast, before the recession, I was formulating plans to move to Tucson where SOAVI offers regular services comparable to Lighthouse in major cities and welcomed my computing expertise as a volunteer. Retirement-rich Prescott is incredibly service-poor.
      I regret that so few other low vision people in the Prescott area can receive comparable training. I also note that there is no computer training I am aware of nor any exposure to assistive technology comparable to the audio reading, book services, and more available to veterans and students. As a technologist, I found my own resources, and I am proposing such information through courses at OLLI at Yavapai College.

    3. How it feels to be a citizen deprived of health insurance “choices”.
      • Not health but rather,
        corporations insurance. They determine the risk pools, not the forces of demographics and society. Some person pushed around the paper to deny me coverage for my pre-existing condition and, at AARP, of any insurance. Managers and policy makers determined that, no matter what else about my health, I would reduce profits in annual exams. I’ve read that about 400,000 health corporation employees spend their working hours paid by premiums to deny insurance to citizens in order to pass profits to shareholders and corporate bosses. This is as evil a form of capitalism as could be imagined with no innovation, public service, or redeeming values, just pure profiteering.

      • Even more insulting, as a “self-pay” I got to fork over for the full rate rather than any reduction negotiated among doctors and insurers. Luckily, I had only year and a half of routine exams for my “pre-existing condition” but lived in fear of a major treatment that could run into $10,000s.

      • I am appalled at state politicians and tax payers who refuse resources to
        our system of social services so starved of trained rehab people that low vision individuals sacrifice safety and independence that probably lead to higher medical costs, e.g. $1000 when I tripped over a decorative rock down town Prescott.

      • I also resent second class status as a citizen who has for nearly 20 years supplemented family members in and out of personal difficulties, but now becoming taxpayers. I was a willing safety net, but there’s no net for me.

      • A visiting friend recently got excited at the national anthem played at the square, but I could find no feeling of national loyalty, only sorrow for myself and the many other disabled people I know who, with great resilience, overcome disability but always end up with less financially and more aggravation and deprivation from lifetime medical services. You own your pre-existing condition, so it goes, but why should the U.S. support a medical industrial complex that profits from exclusion of persons with disabilities.

      • Finally, I know all too many people who remain mired in companies they dislike, submitting to discriminations practices, enslaved due to health insurance.

    Recommendations

    Abolish the profiteering, paper pushing, intrusive health insurance companies and provide full support for a public option. No country can claim it is “good and great” when its health care system is rotten and wasteful at the core. Why fight terrorism abroad and still facilitate slavery and profiteering from illness and disability in the home system?


    Additionally, extend the notion of health support to include the social services, rehab specialists, training centers, and public support that keeps people with disabilities productive and not needing more costly medical services. Just adding 3 more rehab people to the Prescott area would add, what, maybe $300,000 or about one middle-class house or a $1 more taxes. Now, realize that everybody will be disabled eventually and these specialists are even more essential.


    Note that the disability I describe is a “social construct” as much as an individual condition. I have rather resiliently responded to my condition with great personal growth while the insurance and social services have constituted far more challenge and distress. I have only faced the full force of this dysfunctional system for about 10 of the 15 years of my progressive disability while many others have a lifetime. I have come out with a sense of service to others exhibited in my blog writing, advocacy in social media, and participation in lifelong learning distance education opportunities at Yavapai College.


    Fix the system by abolishing private health insurance, acknowledging that this impoverished dogma of capitalism is far worse than any possible replacement that serves all the people. Apply the funds, after retraining insurance paper-pushers, to building a disability friendly society that, like the curb cut, will improve lives for everybody.

    Addendum: So now we know, sorry,, the nation cannot afford health insurers!

    Many U.S. citizens have lost our innocence about capitalism watching the fiasco of Wall Street bailouts and, now, the role of the medical-industrial-government complex in our personal lives and 1/6 of the national economy. So, it’s now established baseline that acceptable universal health care can be provided for 3% overhead, i.e. Medicare. And, facts vary, but let’s assume premiums carry 20% overhead, including profits to shareholders, bonuses to executives, salaries to underwriters (i.e. those who deny insurance or claims), adjusters who hassle doctors and their administrators over claims, processors who actually do work comparable to the Medicare 3% overhead. Oh, yeah, also lobbying, lawyering, and the usual industry hobnobbing at expensive places. All this, when in many locations there are near monopolies or few competitors. And more along the lobbying vein are the subsidiary think tanks that produce reports to influence legislators.

    Can the U.S. economy actually sustain 20% versus 3% overhead costs? Wouldn’t we be nuts to continue such a costly system? Well, not if it were geared toward innovating and modernizing health care records and studies of comparative treatment effectiveness. But that’s not happening, at least for the benefit of the citizenry. No innovation, inhumanc3e denial of services, isn’t this just pure profiteering?


    Here’s a counter-proposal if U.S. citizens cannot give up on capitalism in its most appropriate context, as argued by NYTimes columnist Paul Krugman. Knowing 3% overhead is the baseline, allow 5% of premiums for profit private companies. That’s all, covering administration, executive salaries, and dividends. Sorry, insurance industry investors, and I’m probably one somewhere in my diversified portfolio. Profits have been inflated, costs have not been controlled, it’s time for reparations after the war on those with pre-existing conditions. But won’t the health industry go nuts and up their charges? Well, let the insurers and health care providers go to negotiating like other claims, rather than allow the insurers to have the final call. Now, let’s slice off another 1% of premiums into a fund to improve healthcare delivery, doctors’s lives in underserved districts, the social service gap I’ve described. Isn’t that a better trade-offhann corporate bonuses or deniers’s salaries?

    Bottom Line: If the for-profit insurers’ cannot even come close to a current public option, i.e. Medicare, the country cannot afford to subsidize their dogmatic capttalism. For those who cannot abide government-run systems, give a private option capped at a reasonable level of 5% overhead, stripped of denial privileges and forced to innovate and streamline to survive.

    Contact

    August 19 2009
    Susan L. gerhart, Ph.D.
    https://asyourworldchanges.wordpress.com
    blog “As Your World Changes”, ‘Adjusting to vision loss with class, using technology’

    slger123@gmail.com

    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

    The Pleasures of Audio Reading

    This post expands my response to an interesting
    Reading in the Dark Survey
    Sighted readers will learn from the survey how established services provide reading materials to be used with assistive technology. Vision Losers may find new tools and encouragement to maintain and expand their reading lives.

    Survey Requesting feedback: thoughts on audio formats and personal reading styles?

    Kestrell says:

    … hoping to write an article on audio books and multiple literacies but, as far as I can find, there are no available sources discussing the topic of audio formats and literacy, let alone how such literacy may reflect a wide spectrum of reading preferences and personal styles.

    Thus, I am hoping some of my friends who read audio format books will be willing to leave some comments here about their own reading of audio format books/podcasts. Feel free to post this in other places.

    Some general questions:
    Do you read audio format books?
    Do you prefer special libraries or do you read more free or commercially-available audiobooks and podcasts?
    What is your favorite device or devices for reading?
    Do elements such as DRM and other security measures which dictate what device you can read on influence your choices?
    Do you agree with David Rose–one of the few people who has written academic writings about audio formats and reading–that reading through listening is slower than reading visually?
    How many audiobooks do you read in a week (this can include podcasts, etc.)?
    Do you ever get the feeling form others that audiobooks and audio formats are still considered to be not quote real unquote books, or that reading audiobooks requires less literacy skills (in other words, do you feel there is a cultural prejudice toward reading audiobooks)?
    anything else you want to say about reading through listening?

    This Vision Loser’s Response

    Audio formats and services


    I read almost exclusively using TTS on mobile readers from DAISY format books and newspapers. I find synthetic speech more flexible and faster than narrated content. For me, human narrators are more distracting than listening “through” the voice into the author’s words. I also liberally bookmark points I can re-read by sentence, paragraph, or page.


    Bookshare is my primary source of books and newspapers downloaded onto the Levelstar Icon PDA. I usually transfer books to the APH BookPort and PlexTalk Pocket for reading in bed and on the go, respectively. My news streams are expanded with dozens of RSS feeds of blogs, articles, and podcasts from news, magazines, organizations, and individuals. Recently, twitter supplies a steady stream of links to worthy and interesting articles, followed on either the Icon or browser in Accessible Twitter.

    I never seem to follow through with NLS or Audible or other services with DRM and setups. I find the Bookshare DRM just right and respect it fully but could not imagine paying for an electronic book I could not pass on to others. I’m about to try Overdrive at my local library. I’ve been lax about signing up for NLS now that Icon provides download. No excuses, I should diversify my services.


    I try to repay authors of shared scanned books with referrals to book clubs and friends, e.g. I’ve several now hooked on Winspear’s “Macy Dobbs” series.

    Reading quality and quantity

    I belong to two book clubs that meet monthly as well as taking lifelong learning classes at the community college. Book club members know that my ready book supply is limited and take this into consideration when selecting books. My compact with myself is that I buy selected books not on Bookshare and scan and submit them. I hope to catch up submitted already scanned books soon. Conversely, I can often preview a book before selection and make recommendations on topics that interest book club members, e.g. Jill B. Taylor’s “Stroke of Insight”. I often annoy an avid reader friend by finishing a book while she is #40 on the local library waiting list. This happens with NYTimes best sellers and Diane Rehm show reader reviews. No, I don’t feel askance looks from other readers but rather the normal responses to an aging female geek.


    At any one time, I usually have a dozen books “open” on the Bookport and PlexTalk as I switch among club and course selections, fiction favorites, and heavy nonfiction. However, I usually finish 2 or 3 books a week, reading at night, with another 120 RSS feeds incoming dozens of articles daily. I believe my reading productivity is higher than before vision loss due to expedient technology delivery of content and my natural habits of skimming and reading nonlinearly. Indeed, reading by listening forces focus and concentration in a good sense and, even better, performed in just about any physical setting, posture, or other ambient conditions.
    Overall, I am exquisitely satisfied with my reading by listening mode. I have more content, better affordable devices, and breadth of stimulating interests to forge a suitable reading life.

    Reading wishes and wants


    I do have several frustrations. (1) Books with tables of data lose me as a jumble of numbers unless the text describes the data profile. (2) While I have great access through Bookshare and NFB NewsLine to national newspapers and magazines, my state and local papers use content management systems difficult to read either online or by RSS feed. (3) Google Book Search refuses to equalize my research with others by displaying only images of pages.


    For demographics, I’m 66 years old, lost last sliver of reading vision three years ago from myopic degeneration, and was only struggling a few months before settling into Bookshare. As a technologist first exposed to DECTalk in the 1980s, I appreciate TTS as a fantastically under-rated technology. However, others of my generation often respond with what I’ve dubbed “Synthetic voice shock” that scares them away from my reading devices and sources. I’d like to see more gentle introductions from AT vendors and the few rehab services available to retired vision losers. Finally, it would be great to totally obliterate the line between assistive and mainstream technology to expand the market and also enable sighted people to read as well as some of us.

    References and Notes on Audio Reading

    1. Relevant previous posts from ‘As Your World Changes’

    2. Audio reading technology
      • LevelStar Icon Mobile Manager and Docking Station is my day-long companion for mail, RSS, twitter, and news. The link to Bookshare Newsstand and book collection sold me on the device. Bookshare can be searched by title, author, or recent additions, and I even hit my 100 limit last month. Newspapers download rapidly and are easy to read — get them before the industry collapses. The book shelf manager and reader are adequate but I prefer to upload in batches to the PC then download to Bookport. The Icon is my main RSS client for over 100 feeds of news, blogs, and podcasts.
      • Sadly, the American Printing House for the Blind is no longer able to maintain or distribute the Bookport due to manufacturing problems. However, some units are still around at blindness used equipment sites. The voice is snappy and it’s easy to browse through pages and leave simple bookmarks. Here is where I have probably dozens of DAISY files started, like a huge pile of books opened and waiting for my return. My biggest problem with this little black box is that my pet dog snags the ear buds as his toy. No other reader comes close to the comfort and joy of the Bookport, which awaits a successor at APH.
      • Demo of PlexTalk Pocket provides a TTS reader in a very small and comfortable package. However, this new product breaks on some books and is awkward managing files. The recording capabilities are awesome, providing great recording directly from a computer and voice memos. With a large SD card, this is also a good accessible MP3 player for podcasts.
    3. Article supporting Writers’ Guild in Kindle dispute illustrates the issues of copyright and author compensation. I personally would favor a micro payment system rather than my personal referral activism. However, in a society where a visually impaired person can be denied health insurance, where 70% unemployment is common, where web site accessibility is routinely ignored, it’s wonderful that readers have opportunities for both pleasure and keeping up with fellow book worshipers.
    4. Setting up podcast, blog, and news feeds is tricky sometimes and tedious. Here is my my OPML feeds for importing into other RSS readers or editing in a NotePad.

    5. Here’s another technology question. Could DAISY standard format, well supported in our assistive reading devices become a format suitable for distributing the promised data from recovery.gov?
      Here is a interview with DAISY founder George Kerscher on XML progress.

    6. Another physiological question is what’s going on in my brain as I switch primarily to audio mode? Are there exercises that can make that switch over more comfortable and accelerated than just picking up devices and training oneself? I’m delving into Blogs on ‘brain plasticity’
    7. (WARNING PDF) Listening to the Literacy Events of a Blind Reader – an essay by Mark Willis asks whether audio reading can cope with the critical thinking required in a complex and sometimes self-contradictory doctrine like Thomas Kuhn’s “Scientific Revolutions”. This would be a great experiment for psychology or self. Let’s also not forget the resources of Book Club Reading Lists to help determine what we missed in a reading or may have gained through audio mental processing.

    Audio reading of this blog post

    Great!! Twitter has Less to See, More to Say and Hear.

    This post relates my experiences using the micro-blogging system “twitter”. For once, accessibility issues drift into the background and the educational, emotional, and entertainment aspects of the technology engage me in the social media movement. In summary, an undisciplined person can fritter away mountains of time on molehills of information that pop up in the Twitter landscape created by following choices. However, a person with self-directed interests can find bubbling brooks of content pointers and insights with occasional gold nuggets never otherwise revealed. An alternative title might be “Does Twitter make me fitter? or flitter?”

    Please, please, explain twitter

    First, what’s the “twitter model” of information flow? Blogs have gained popularity because individuals believe their special interests and expertise attract like-minded readers who can contribute feedback and merge to reach higher goals. Let’s admit that it takes courage to make that first blogging step whether for business survival or personal growth. Twitter concentrates the writing and reading into 140 characters per message, roughly a headline, topic sentence, or link reference. The underlying technology builds on the Publish-Subscribe model that you put your information someplace, others find its location, assess its quality and relevance, then add the location to automated systems, dubbed “clients”, to fetch the latest messages. The Twitter lingo is that you “follow” somebody, others “follow” you, and Twitter central facilitates the broadcast of messages by allowing clients to send and receive messages, including its own website twitter.com. The power of twitter also comes from distributing following-follower lists, enabling, in computational thinking terms, symmetric and “transitive relationships”, where “I follow X ho follows Y who follows Z” and “oh, look, A is following me, looks interesting, so I’ll follow A who also follows B, etc.”.

    How does a person, sighted or not, use twitter?

    Accessibility issues are minimized to only getting past the account sign-up anti-spam CAPTCHA image or audio at twitter.com. since the main functions of using twitter are inputting 140 or fewer characters and links or buttons to handle following activation, user interfaces are simple, non-visual, and enabled by an API (Application Programming Interface) at Twitter Central.


    I use two twitter clients. The Levelstar Icon Mobile Manager Version 2 software provides basic capabilities for sending messages, updating the so-called “tweet roll” of messages from people I follow, as well as checking out my followers and followees by profiles and thei follow contexts. A web interface Accessible Twittter.com applies many principles for making web pages easily usable with a screen reader. Another useful interface, Mobile Twitter offers a spreadsheet look, good for fooling bosses and quick to read.

    So, how does one get started in twitter?

    After getting my account, Twitter Central showed me some highly followed people, one of whom I knew by name, Slate journalist John Dickerson. Then I thought up people I respected from blogs, podcasts, and books, adding Jon Udell, John Batelle, W. David Stevenson, Danah Boyd, Francine Hardaway, and Denise Howell. That gave me a well-rounded expansion of people whom I respected and could trust to follow worthy thinkers and doers. At some point, I believe centered on Accessible Twitter creator Dennis Lembrée of WebAxe podcast brought me into transitive and cyclic lineages of accessibility gurus. Fortuitously, these folks were organizing a “tweetup at CSUN accessibility conference and I was quickly following a few dozen people I didn’t know who were building a community for sharing their blog writings, insights, complaints, and traveling.


    On the other side, now with my own account, I had to figure out what to say, personal and professional, more later on this dilemma.

    Why twitter makes me fitter

    My take on “social media” is that individuals in society need to both maintain their past affiliated relationships, like co-workers, while expanding their options and facilitating personal growth. This gets very interesting when generations, genders, and interests cross traditional social boundaries. My selection of people to follow has one common criterion: independent thinkers, solo proprietors, those who “own their minds” with any company affiliation in the background. I care not a wit for any organizational tricks or complaints. Messages from such people are often like “well, here’s this great insight, but nobody here to tell, except the cat/dog, a good mid-afternoon tweet treat for myself”. More often I see the straightforward “worth reading to learn X, here’s the link”. For me, as receiver, this adds up to a dozen or so tabs and web pages lined up in my browser, kind of a morning clipping service. Since I’m learning about accessibility and assistive technology, I’m getting a daily reading list and lessons from experts whom I trust to know what’s important.


    The cross-generational aspects of twitter are fascinating. In physical life, I attend lifelong learning courses and book clubs where, at age 66, I’m often one of the younger members, so story telling extends back before WW II and parents in the Depression (the previous one). Not surprisingly, one sometimes hears grumbling about “those kids and their toys”, which I also co-exist with at home. On twitter, I’m an elder lurker, used to being the invisible older woman, trying to inject my own decades of experience, expecting little interest — “who cares about email in the 1970s?”.


    Also intriguing is the cross-over of geographical and technical interests, e.g. learning about Jon Udell’s “Calendar Curation” project, including nitty-gritty technical things I can still understand, if not perform. I also keep up on electronic publishing, government data,Arizona entrepreneurs, and general technology, almost anything except boring past professional organizations and hard to find local connections.


    To cite one of those nuggets of gold, my tweet role is currently filled with reports of the Trends at a European conference on accessibility for the Aging. Just hearing the stream of topics provides the collage of technical and social concerns, while I register mentally those slides I want to peruse for my recurring theme posting on vision loss, including advice for care-givers.

    How does twitter make me flitter?

    One thing I do get better at with age is managing my energy level. The rules are simple. “Add a follower, measure whether you’re at a limit of time or interest, demote something”. Also recognize “context switching takes energy, so confine contexts to current interest”. In other words, you cannot keep up with everything, so must, always, be trimming back. This gets harder when you must delete yourself as a follower of a person you like but don’t need. Sadly, hey, if I have to keep skipping or reading tweets I dislike or don’t care about, I’m soon going to disregard that person, so better drop this relationship sooner. Snip, see you later.


    I’m luckily immune to most pop culture, but occasionally do need a dash of heart tugging or mockery or irritation. Ok, I confess, I couldn’t tell you one thing about American Idol but I’m compelled to keep up with Britain talent Susan Boyle phenomenon. Those judges smirking at her age and looks, telling her they’d laughed at her, gets my feminism and ageism ire going. But seeing somebody have a lifetime high moment, and do a fantastic performance, well, that makes me feel ever so human. Don’t tell me the show is rigged.

    Twitter for the Vision Loser

    I hope you’ve now seen that Twitter is a great match with needs of this Vision Loser, maybe others.

    1. With a text-based technology, there are no complex interfaces to master. Indeed Accessible Twitter is designed with the best practices to streamline reading and writing in Twitter.

    2. The twitter user world, millions of people with varied interests, offer a mixed blend of personal, professional, and avocational content. Find the people you like, the people they like, and you can be on the fringes of ongoing conversations to deepen and broaden your interests. Yes, this is like over-hearing art experts discussing a portrait in a gallery, but what’s wrong with that?

    3. Most charitable organizations are now on twitter, e.g. Red Cross, Lions Club, NFB, etc. Vision-related advocacy cropped in the
      Amazon Kindle publisher guild petitions and protest. VisionAware and Fred’s Head from APH offer a steady diet of news about vision related topics and assistive technology. And this VisionLoser formed her own self-study of the accessibility field from trickle down tweets.

    4. Step out yourself by replying to tweets when you know something relevant. That’s one way to gain followers and enter the community. And start your own follower-ship by invitation and productive posting.

    5. Pay no attention to the million-follower celebrity races unless you dig playing their games. You can find your own playground and make your own acquaintances. And, ugly words like “friend
      “, as in somebody’s name added to a list, is cultural inanity. However, real relationships do build over time by reading blog or twitter thoughts.
      But oh, that very first tweet, like any “first”, can be scary. The prompt is “What are you doing?” which can be translated into now, right this moment? today’s big challenges? for the rest of my life? You can start out personal or think for 2 days, but probably nobody cares either way. In a month or so, you develop your own rhythm and style of posting. That’s where personal growth comes in, as you discover what matters enough to post or withhold, how to condense a though into 140 characters, and integrate twitter information flows into your reading and learning. Twitter is seductive, like writing a journal, and evaluating your goals and progress.

    6. Suppose you succumb to “twitter fritter” and waste scads of time with little return? We all have that problem and need to find our own self-control mechanisms. For me, this is an internalalization of battery drain with intellectual and emotional energy signaling the value of certain communications. Another problem is privacy concern, since you’re giving away your whereabouts and daily routine, but that’s part of what we have given up for a technological society, or formerly living in a small village.

    7. Here are a few general readings:

    Follow me on Twitter at slger123

    The Techie Caregiver Conundrum: Support, Training, and Growth

    The Techie Caregiver Scenario


    You are in your mid-forties, a busy, still employed, computing professional. Family members need your help to maintain their independence and life styles.


    Dad recently retired and is bummed out because an elbow injury limits his golf rounds. As a former executive, he’s not really comfortable with computers, keyboards, and Internet dependence (think John Mc Cain). Dad also has a hearing problem in certain frequencies in addition to his sore elbow.


    Grandma is a spry octogenarian but her ten year old PC cannot keep up with book club planning, PDF newsletters, and You Tube entertainment. She is developing macular degeneration, with increasing difficulty reading books, newspapers, and the never-ending stream of forms required for transactions, such as banking and insurance.


    You, by the way, are in the 5% of the population with significant color blindness that alters your perceptions of web pages and applications displayed on screens.

    The Caregiver’s Problems

    Besides being a dutiful child, you recognize the long run benefits to all family members of keeping Dad and Grandma independent, happy, and healthy. So, it’s time to think through the situation and do some planning.


    It looks like you will have several roles:

    • Tech Support for buying, setting up, and maintaining computers, networks, and phones
    • Trainer on new hardware, software, and business practices
    • Tour guide to show Dad and Grandma the web services, entertainment sites, information sources, and spy ware dangers.
    • Advocate when an extra 0 goes into a credit card payment, a service charge shows up,, insurance change forms get lost, etc.


    Groan, this could be really time consuming and cause family friction. What to do?

    1. Where do you learn the technology options for your family needs? Your practices don’t seem appropriate for their specific challenges?
    2. Where can you get support for yourself when times get frustrating? How do you develop the attitude for helping without anybody seeming burdened?
    3. How can you bring some professional growth for yourself? Where do you learn about so-called assistive technologies, accessibility practices, and technology trends that meld generational differences with your company’s product lines?
    4. Hey, there must be some business opportunities here since your family elders are typical consumers with social needs that match the national costs of health care, citizen involvement, lifelong learning, and longer active life spans.

    Fast forward a few months

    Ok, Dad and Grandma have new, remarkably affordable notebooks, home wireless, and a bunch of web service accounts. But there have been several surprises:

    1. Dad cannot adjust to the notebook keyboard, and refuses to use the typing tutor you bought.
    2. Grandma loves using high contrast black displays that complicate your explanations over the phone, since you see even more differently than the color blindness you’re used to.
    3. Dad likes his mp3 player but cannot get the hang of transferring files, sync, and storage limits.
    4. Grandma learned about a handheld thing called Victor Reader something that will read books to her now that she has overcome Synthetic Voice shock.

      Follow up on this scenario: helping the caregiver

      In a couple of months, I’ll post a list of services, tips, etc. and welcome suggestions to slger123@gmail.com.

      Thought Provoker community inspires me to try a similar challenge for computing communities. Especially with disabilities and seniors on the Obama agenda this is one way to accept responsibility and generate interest in problem solving. I am willing to nag the computing professions to overcome their thoughtlessness and ignorance of relevant technologies and practices, as I was in that attitude and knowledge state myself recently enough to remember and cringe. Also, I’ve had to deal with caregiver issues in my own family, friends, and physical circles. I would appreciate any help in bring Caregiver Assistance into the open and make pragmatic progress.