Definition: Resilience: : an ability to recover from or adjust easily to misfortune or change
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.
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.
- Elizabeth Edwards ‘Resilience: Reflections on Dealing with Life’s Adversities ‘
- 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
- Harry Martin ‘What Blind People Want Sighted People to Know About Blindness
Related Posts from ‘As Your World Changes’
5 Tenets for Adjusting to Vision loss
Memory, Identity, and Comedy: Conversations with author Susan Krieger
What’s a print-disabled reader to do? Bookshare!
Grabbing my Identity Cane to Join the Culture of Disability
The Pleasures of Audio Reading
Aren’t we Vision Losers lucky?
Resources, support, and reality check for macular degenerates
Consolidating links in Prescott Arizona about vision loss