Posts Tagged ‘white cane’

What Vision Losers Ask in Searches

April 19, 2010

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.

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Disabled? Sorry, *NO* insurance for you!

August 19, 2009

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

June 28, 2009

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

December 2, 2008

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

Grabbing my Identity Cane to Join the Culture of Disability

May 14, 2008

How the white cane marked my transition

I am just coming off 2 months of travel to events in differing capacities as professional reviewer, accessibility spokesperson, disability consumer, and general traveler. After two years of legal blindness, I am still feeling like an immigrant in a new culture. I retain strong memories of my past ways of work and interpersonal interaction, but I am now beginning to understand the culture of disability. This transition has been marked by my adoption of the Identity Cane as a frequent companion as I navigate my hazy world.

Description of the white identity cane

The Identity Cane is a slim white cane intended not for robust walking assistance but rather to let others know its carriers are visually impaired. There are a few issues here.

First, consider robustness of the instrument. Mine, costing about $20, folds nicely and is quite light. It is good for poking at curbs and sidewalk spots that look like holes or ridges. But it is not for tapping or waving, as would be learned in a mobility training regime. One tangle with a fire hydrant or bicycle and this pole will be a pile of sticks. However, compared to other physical gadgets that seem to break for no reason, this fold-up item is holding up well.

How the identity cane signals vision limitations

The Identity Cane is meant to be a signal to passersby, service people, and new acquaintances that you have vision difficulties where they might help you. The other day, at an intersection, another street crosser seeing my cane just stated loudly "ok, time to cross", not knowing whether I could see him or how much help I needed. Airport personnel are alert to the cane to offer assistance to find elevators or check-in counters. A white cane can also gain more polite and helpful responses when you ask a stranger "where is the Saint Michael Hotel?" while standing directly in front of its sign.

However, this little pole is no badge of invincibility. Drivers on cell phones are just as likely to run over you whatever you are carrying, although the cane can be waved to possibly attract attention. Airport T.S.A. check-ins are variable, with some monitors wanting to stuff your cane onto the conveyor or into a box or frisk for objects planted on the blind lady. To my surprise, nobody ever asked when I went through security with my soon-to-expire Drivers License in one hand and a white cane in the other. A cane can help remind flight attendants you might need extra help but it might also enlist an unwanted wheel chair rather than a walking escort, if needed at all.

The identity cane influences my own behavior

For me, the Identity Cane is an important reminder that I am partially sighted. I do not use it on my exercise walks along a regular route, but elsewhere it tells me "slow down, watch out for decorative stones that might send me to the Emergency Room, look for exit doors that might set off sirens, remember I can ask for help, never take a short-cut, generally behave like a person who cannot see everything".

Yes, it was really hard to get used to carrying the cane as an Identity. What if people think I am blind? Well, duh, Susan, remember your priorities – safety is paramount, energy is consumed by covering up, and relationships are hard enough without the ambiguity of a disability.

But it is not really that simple to clarify the cane’s meaning if you are partially sighted. Having covered up my condition for 5 years with an uncomfortable employment situation, I became very good at navigating and acting normal. Except when I tripped or ran into something. Then I looked clumsy. Or when I skipped an event that was hard to handle for transportation or dining reasons,, I appeared unsociable or shirking. This is getting into more aspects of the culture of disability, where adopting the cane is an admission of vocational difference, a more than symbolic transformation of identity that demands organizational change in work or community groups.

The white cane educates public option

Since low vision is a relatively rare occurrence condition the Identity Cane is a strong signal in the noise of everyday life. Never in my career had I seen a blind woman at a professional event, so my cane carrying at recent working gigs has probably been most unusual for other attendees. That is especially good for computing professionals to remind them that low vision is not just for their grandparents but also is part of the working conditions for someone performing the same tasks as them. If only it could also raise their curiosity to learn more about assistive technology, the afflictions of their students, the A.D.A. regulations they wish away, and the prevalence of accessibility issues.

For me, the Identity Cane is a badge of education, not only within my profession but also in the community that suffers from lack of low vision services. Visually impaired people may appear less often in public leading to a circle of ignorance. City fathers think "we do not need to pay for accessible street crossing when nobody blind wants to cross" — but no sane blind person would risk their life at the intersection. This makes the Identity Cane a symbol of activism as well as a protective measure.

The identity cane is a strong force in vision loss

In summary, the cane used only for Identity is a strong force for overcoming vision adjustment resistance, personally, professionally, and for the wider public.