Andrew Leibs's Blog
Posted by Andrew Leibs
In January, while readying to attend Ski For Light, I booked a flight into the wrong airport (North Bend, instead of Bend, Oregon) and had to pay an additional $348. It irked me, especially since Yahoo Travel auto-filled North Bend for me, but I thought little of it.
I bought a new ticket and splurged for a private room and an airport limo. I won’t mention my behavior at the silent auction.
With the economic collapse, such debit card swipes feel like the sort of antediluvian excess that brought the flood. Ski For Light in 2009? Out of the question. I can’t stop dividing that vanished $348 into this month’s bills.
Recessions hit recreation programming hard: donations dry up, volunteers give up hours for jobs, while the disabled, of whom many are unemployed or on fixed incomes, have fewer dollars to devote to travel or adventure.
In times such as these, we need to remain inquisitive, flexible, and creative in finding ways to get or keep fit and enjoy our leisure time.
Here are four money-saving tips from my experiences as a disabled, some-time athlete:
- Always ask for a disability discount. My city’s adult recreation center charges seniors half the annual membership fee. I said my legal blindness should warrant the same discount, and they assented.
- Work with organizations; they want to help. Ski For Light, for example, has limited needs-based scholarships; many established programs will offer reductions or strategies. When a layoff threatened my attending Outward Bound, the school cut my balance in half.
- Be on the lookout for new programs. Just when I think I’m aware of everything, I find something new, as I did last month when I learned about the America the Beautiful Access Pass, a free lifetime entrance permit to US national parks and historic sites, available to those with medical disabilities. No entrance fee and falling gas prices could put that Yellowstone trip back on the table.
- Be creative and flexible: Do you have a volunteer who’s into hiking or museums? Tag along. Find out if para-transit options can avail you of new opportunities. Tell the Meetup board-game group you’d like to host a game night.
Creating your own opportunities can be as rewarding as the activities themselves.
Posted by Andrew Leibs
I remember opening my large-print Scrabble set and staring blankly at a white board, its scoring squares marked in small black letters.
The board on the box showed the familiar color pattern of the scoring squares, the bold blues and reds, robin’s eggs and pastel pinks—crucial shapers of each game’s strategy and mood.
I was looking forward to the set. Recent games using the Chiclet-sized tiles of a friend’s travel version put me at a disadvantage. But the thought of using this board, purchased from a supplier of products for the blind, was deflating. I spun it on its lazy susan and thought, “Scrabble as seen by dogs.”
The design made sense: high-contrast representations can be more discernable to persons with low vision. I liked the white tiles’ large black letters.
But this attempt at accessibility left me cold, and actually made playing more difficult. Identifying colors is far easier for me than leaning in to read small letters, and far more motivating.
The challenge of perceiving the extent of low vision is the imagination’s tendency to remove aspects from normal vision, e.g. a TV news story that blurs the camera to portray vision loss.
Color is another component easily removed. Color blindness is often presumed. On a cross-country bike trek, one participant told another, “Andrew’s riding with us because he can’t distinguish streetlights.” It reminded me of the eye specialist’s shock when I quickly traced the numbers camouflaged on the pages of a color-blindness test.
Most irksome are extrapolations tossed off as fact, as this note in Diane Ackerman’s Natural History of the Senses: “Because albinos lack a dark layer of cells behind the retina, more light travels around inside their eyes and colors often seem to them quieter and more diluted.”
Than what? Normal vision? And how is it quantified?
It’s not. It’s simply supposed. And it’s suppositions such as this that mislead well-meaning manufacturers into needless product adaptations, like that sterile grid of a Scrabble board, used once.
Posted by Andrew Leibs
Leading the Way 2009 Grand Canyon Rafting Expedition Application Deadline Extended
Due to high interest, the application deadline for the Leading the Way 2009 Grand Canyon Rafting Expedition (July 6-21, 2009) has been extended to December 1.
The expedition, led by renowned adventurer Erik Weihenmayer, welcomes blind, visually impaired, sighted, deaf, hard of hearing, and hearing students aged 14-21, teaches leadership, service, science, and culture within the Grand Canyon, challenging students to:
- Lead: Step outside their comfort zone and learn to use adversity as an advantage
- Learn: Explore new cultures, understand global conservation issues, engage in community service, and to become a responsible global citizen
- Live: Experience the joy of travel and discover the inner power to make a difference in the world.
Download an application (braille and large print versions available upon request). Scholarships available.
Erik Weihenmayer is the first blind person to summit Mount Everest (May 25, 2001), the world's highest peak and one of fewer than 100 climbers to reach the Seven Summits (August 20, 2008), the highest point on each continent. He is also an accomplished paraglider and skier, member of the Wrestling Hall of Fame, and winner of many awards, including an ESPY. His books include Touch the Top of the World (Plume, 2002) and The Adversity Advantage: Turning Everyday Struggles Into Everyday Greatness (Fireside, 2008), co-authored bestselling business guru, Dr. Paul Stoltz.
Posted by Andrew Leibs
Dale Carnegie said it’s easier to make a million dollars than to put a new word into our language. I don’t know if he ever priced having one removed, but I'd pay any price to never again hear the dehumanizing word “albino.”
It might seem strange how this word, infusing our culture from Moby Dick to Mad TV, could evoke such a reaction. But as a person with albinism (the preferred idiom), I can tell you it takes enormous energy to maintain self-esteem with this word still lurking in our language, still used with impunity by any writer seeking to amuse or appall.
This was driven home recently while I was watching a sitcom, when, at the height of an ugly marital conflict, the pale husband is blasted with “albino” as the ultimate insult, cruel and comic, for the fair skinned. Later, on a different show, “albino” was paired with dwarfism to form some writer’s comic tableau of perversion.
I’m reasonably confident and accomplished and have spent years confronting albinism through writing. Yet when I hear the word “albino,” I’m jolted: I feel anxious, exposed, and angry, realizing how this word, most often used derisively, remains impervious to political correctness at a time when broadcasting one ill-chosen word, regardless of intent, can end a career.
It amazes me how once-common words that fuse condition or ethnicity with one’s humanity (e.g. Jap, Mongoloid, Negro) are embarrassing memories in our age of hair-trigger humanism, while “albino,” coined in the 17th century by a slave-trolling Portuguese explorer, warrants a spell-check entry in the AP Stylebook, while it’s ultimate value, to my ear, is to make its users feel pithy, precise, or powerful.
Eating the shadow of this word has consumed much of my adulthood.
I grew up in a village in upstate New York in the 1970s. My school was small and teachers then (most adults really) exerted far greater influence over rude behavior. I was rarely taunted.
“Albino,” however, had a secret life. I cringed to hear it across a field, or from a window or passing car. It matured with me, like some half-brother banished at birth forever plotting his return. I kept driving it out. It kept coming back.
By my twenties, this struggle fenced the boundaries of my confidence. It depressed me that my condition could be ripped into with this one word, which described nothing about me accept my appearance. The need to suppress that label kept me close to home, from asking tough questions as a reporter, and from standing up in situations, whether at home or in the office.
I knew I had to confront my condition, but accepting that word was impossible. Saying it, even writing it on paper felt unsafe, like living in a house to which strangers held keys.
A breakthrough came once I stopped thinking about my life and began to write down memories of encountering albinism in culture—i.e. how the world sees albinism.
I remember when I was 14; The Eiger Sanction aired on my family’s TV. When he is told, “Mr. Dragon does not like to be kept waiting,” Clint Eastwood quips, “Oh, the impatient albino.” I can still feel the shock and shame of that sudden unkind naming of my condition, which we never spoken of.
When I found references to “albinos” in nearly 200 books and movies, my family’s silence was easier to understand. Albinism is vilified like few human conditions. In film, especially, it’s used to embody everything we fear most in people: the stalker, the soulless assassin, hideous, relentless, impervious to pain. I could laugh off absurd characterizations, but the word still stung.
Even innocuous comedies such as Mr. Hobbs Takes a Vacation has a frustrated Jimmy Stewart, who, on seeing his daughter dancing with a blond boy, angrily barks, “He looks like an albino!”
It’s impossible to watch such scenes and not feel the contempt infused into that word. I saw that it was really that word, and not albinism that was difficult to face. That realization sparked a more purposeful creativity that enabled me to explore my condition.
Albinism is etched in our imagination, yet the condition is rare enough in daily life that it has no human face. We carry the condition; the world carries its weight and meaning. Such deep-set words are hard to extract.
Still, it’s hard sometimes not to resent albinism’s role as one of the last unmitigated means to marginalize and ridicule, especially as we are so swift to parse out people from their condition. It’s no longer “Idiot Savant,” it’s Savant Syndrome, not “Siamese twins,” but conjoined. Not “albino,” therefore, but person with albinism.
In the beginning was the word. It’s still here. One day, education will dispel ignorance and decency drive it out altogether. Until then, please, refer to my condition, and use my name.
Posted by Andrew Leibs
When you’re disabled, keeping fit can be tough: a blind woman can’t find anyone to pilot her tandem bike, the healthclub pool lacks a lift, or a nearby recreation program provides accessibility, but not transportation.
One solution is to work out at home. I’ve worn out three treadmills in 10 years, preferring basement runs by my stereo to dodging cars and dogs.
The disabled sports boom has inspired the development of exercise programs for many disabilities that people can do almost anywhere, whether confinement is an apartment, wheelchair, or bed. Here are three examples:
Out of Sight Fitness
When Bob Koppenjan saw that blind people don’t go to health clubs, he designed Out of Sight Health & Fitness, which includes a braille book and audio CD providing guidelines on diet and exercise instruction. Students also receive a quarterly newsletter and two phone consultations.
T’ai Chi in a Chair: Easy 15-minute Routines for Beginners
Cynthia Quarta’s book, T’ai Chi in a Chair (Fair Winds Press, 2001) offers 15-minute routines (all of which ca be performed while seated) in the gentle martial art. T’ai Chi helps increase strength, flexibility, relaxation, and overall mental and physical health.
Bed Top Yoga DVD/Videos
“Bed Top Yoga” is a video (now available on DVD) that guides viewers through a series of simple stretches and rudimentary yoga postures, followed by relaxation exercises done while lying down. The course instructor is Carol Dickman (certified Kripalu & Bikram), whose Yoga Enterprises also offers “Seated Yoga” and “Airplane Yoga.” Each DVD or videocassette is $19.95 ($5 shipping) or two for $35.
Posted by Andrew Leibs
I’ve taken driving lessons but never got my license. The inability to drive is my single biggest barrier to leading a fully independent life. The lessons took me over busy highways, even I-95; no mishaps, my vision impairment inconsequential, as it is for so many people who use special telescopic lenses called bioptics.
Yet, after each lesson, I’d come in, peel off a soaked undershirt, questioning my enthusiasm and that of friends, weighing my father’s dismissive doubt as a recurring dream—leaping into the front seat of a speeding car, my break-slamming only grinding the car into slow-motion uncertainty—offered its commentary.
Bottom line: it’s a personal decision. I had two drive lessons a decade earlier with a state trooper and helicopter pilot, one who had taught bioptic drivers. I thought he’d be the ultimate judge of my right to drive, applying a pilot’s precision and unwavering adherence to the law as he watched my agonized maneuvers between cyclists and the centerline.
When I told him this, he just laughed. “You’re driving this car,” he said. “Whether or not you get your license is a decision you make on your own.”
Equality and access was never so daunting.
It sill is, and I will get my license in 2009. I don’t know how much I’ll drive, but I need to pass the test and take responsibility for the restrictions I suffer and the outcomes I create.
Posted by Andrew Leibs
I was flying home, obsessing over the bus; the one I had to catch at the airport to take me the rest of the way, the one leaving within minutes of my arrival. My friend had said, “Just, when you get your bag, go out through the doors to where people are standing …there’s signs; it’s right there…”
For those with 20/20 vision, such directions are more than enough. But for me, being told, “you can’t miss it” only underscores my sight impairment.
I knew the general herding towards baggage claim would get me within yards of where I had to be. But finding the right sign or bench to stand by, my lone task, ratcheted my anxiety for the entire flight.
Outside the terminal, I hurried up and down the sidewalk: no signs. Shuttles, cars, and taxis stopped in front of me and across streets on succeeding sidewalks. I considering crossing, when I saw first the colors, then the letters of my bus slowed behind a cab. I ran up and hit the door. The driver stopped and let me on.
I felt relieved, even victorious till the bus, after a short distance, pulled into its designated stop marked with signage even I could decipher.
Accessible travel has many solutions. I had enough vision to get around, though not enough to escape being bewildered, clumsy, and embarrassed, all in the same minute on a small stretch of sidewalk.
Later on, I called the airport’s public service office and learned of its “meet and greet” program; any disabled traveler requesting help is met and given assistance.
I mention my visual impairment now when I fly. Once a flight attendant knelt beside me and asked, “Are you going to need anything when we land?” I said, “My goodness, where should I start?” I didn’t need any help that day, but just knowing services exist, imagining airport people watching attentively for me as I might for a bus makes traveling more enjoyable.
Posted by Andrew Leibs
I’ve never yelled at my TV watching a track race until yesterday, when I saw US Paralympian April Holmes lunge to a photo-finish victory in the 100-meters.
Holmes is the world’s fastest amputee, the face of US Paralympics, a seminal figure in the disability sports movement, and was the lead story in a 90-minute documentary on the 2008 Beijing games that ran Sunday on NBC.
Holmes is smoking the field, surging to victory in the 200 final, only to stub her spike on her prosthetic foot and fall. No commentary from the booth, no replay, just a sublime image: Dan Jansen with a bloody face (stepped on by a competitor), getting up and finishing.
Her demeanor betrayed no disappointment, frustration, or regret. I was amazed, though less surprised as her story unfolded: April with schoolchildren, removing her leg to pass around, a gesture whose shock quickly dissipates through her supreme confidence…April putting her arm around a child with cerebral palsy, wanting him to know that the 2016 Paralympics are out there for him.
When she jumps to a lead in the 100 final, then fades, then resurges at the finish, leaning with three others, the heart jumps, the voice cries out. I yelled at the screen, “Oh my God—come on!” I never wanted anyone to win so badly: there are many elite athletes, many role models, many indomitable competitors, but very few like April Holmes, whose magnanimity lifts others up.
The NBC documentary, narrated by Bob Costas, kicked off an unprecedented 28 hours of Paralympic event coverage on Universal Sports airing November 10-16.
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Posted by Andrew Leibs
Two years ago, I discovered that, as a blind person, I’m entitled to a property tax abatement. I was thrilled, and annoyed. I’d asked realtor, mortgage broker, and titlist about disability related discounts when I bought my house. They said no. I believed them.
It reminded me that even those of us who believe we are aware of all resources and available assistance resources must remain vigilant.
Order a shirt from one company and catalogues from every clothing maker soon fill your mailbox. Disability organizations have no incentive to find us: budgets are mandates or endowments; marketing focuses on compliance or capital campaigns.
Yet the number of programs, products, and services that exist for the disabled is astonishing, and inspiring.
In 2004, I was helping blind students at a Vermont camp co-sponsored by Rochester, NY-based Camp Abilities. Each prepared a career-focused report on someone they admire which they presented to Joanne Wilson, the US national director of vocational rehabilitation.
One student chose NASCAR legend Dale Earnhardt Jr., which struck me as an absurd choice for a career role model. Then Lauren Lieberman, a professor of adaptive physical education at SUNY Brockport who founded Camp Abilities in 1996, mentioned the Eye Rock 500, a fundraiser where blind drivers using either bioptic lenses or sighted navigators race 50 miles around a half-mile dirt oval track in upstate New York.
I was amazed, and chastened. One race can’t constitute a career, but the event reminded me that even advocates must work hard to be aware of opportunities that arise, and barriers that fall.
Listen to an Eye Rock 2007 audio podcast (including a race report and a Lauren Lieberman interview) from Out of Sight XYZ.
Posted by Andrew Leibs
Hello--
I’m Andrew Leibs, Suite101’s Feature Writer for Accessible Recreation, which includes sports, games, leisure activities, and travel for persons with disabilities.
I’m legally blind since birth due to ocular albinism, but have enough vision to get around, play sports, even drive (with a bioptic lens). The blindness system labels me a “high partial,” a term I dislike, as it connotes “top-of-the-line incompleteness.”
My disability, however, provides an ideal vantage point for understanding accessibility; my life straddles that Rubicon separating the able-bodied from the handicapped. I play Frisbee in the park and a friend is shocked to learn I’m visually impaired; another sees me reading the bus schedule inches from my face and wonders how I ever leave my house in safety.
Like many disabled people, my impairment both hinders and motivates, depending on information, accessibility, and whether a goal incites barrier-breaking desire.
More than anything, though, I’ve learned that ongoing cultivation of organizations and opportunities is the surest way to connect with life-changing resources. In my book, A Field Guide for the Sight-Impaired Reader, I discuss how integrating the myriad resources can do more than level the playing field—it can give you the high ground.
The same is true for sports, recreation, and travel. The Disability Movement, the Americans With Disabilities Act (ADA), and the Internet avail us of more information on opportunities for participation than most of us will ever use, but if you don’t explore possibilities or reach out, you may miss something that could enhance your life immediately.
My hope is that Suite101’s Accessible Recreation articles and this blog will inspire you to think of what you’d like to do and provide information on how you can do it.
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