Reading Between the (On)Lines
by Bethany Broadwell
Reading hardly sounds like an activity that requires brute strength, but people
who have neuromuscular diseases know the pastime can become a veritable workout
if the volume is too bulky, the book binding is too tight or the text is tiring
to the eyes.
In an effort to make the strain less strenuous, several organizations
and companies offer options that make electronic text or e-books accessible.
Discovering the best choice is an individual matter that takes scrutiny and
consideration.
Bookshare.org
Carla Cammack of Effie, La., for example, stopped reading
standard books about five years ago because she was gradually losing use of her
arms. Turning a page became impossible for Cammack, who has spinal muscular
atrophy type 2 (SMA2).
“The loss was so gradual, I hardly noticed it until I realized I
wasn't even trying to read for pleasure. I missed it,” she explained.
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| Carla Cammack |
Cammack learned about Bookshare.org through an acquaintance who first
saw the service at a disability trade show.
Janice Carter, general manager of Bookshare.org, described the site as “an online book-sharing service
that enables scanned digital books to be shared among subscribers with
qualifying disabilities.” By asking members and volunteers to contribute
scanned books, the service can “dramatically broaden the number of accessible
titles available to people with disabilities.”
Those who wish to subscribe to the service must provide proof of a
disability signed by a qualified professional and pay a $25 initial sign-up fee
as well as an annual subscription fee (now $50). This gives members access to
Bookshare’s collection of 25,000-plus books and free access to a software book
reader.
For its 3,500-plus subscribers with low vision, learning disabilities
or limited mobility, Bookshare.org offers best sellers, member requests, and
some textbooks at K-12 and university levels.
A member of Bookshare since spring 2003, Cammack estimated she now
reads 15 books each year. “I have to use self-discipline, because if I read
everything I wanted I'd get nothing else accomplished!”
Bookshare materials have enabled her to earn CPA continuing
professional education credits, to help her nephew with his accelerated reader
class, to learn about disability topics, and to read inspirational works,
humor, mysteries and novels.
At 49, Cammack has listened to many audio books, but print, she
explained, allows for rereading or scanning of a passage. She finds book
holders impractical since she lost the ability to turn pages, even with
mouthsticks. And, although she’s searched, she has yet to find an affordable
page turner.
Bookshare’s annual fee feels pretty high, Cammack acknowledged, until
a reader compares it to book prices. Overall she’s delighted with the service.
Fulfilling special requests would be her only idea for improvement. “There have
been times I wanted a specific book that was not available.”
Ultimately, however, having access to books is what matters. Cammack
concluded, “Of course, reading on a computer screen will never be quite like
reading in bed, or under a shade tree, but it's reading!”
Out of the Realm of Fantasy
Mark Siegel, 32, is an attorney with SMA2 who lives in
Minneapolis. Able to move only his head and his fingers to some extent, he
usually needs someone nearby when he reads. Siegel enjoys a wide range of
materials, from contemporary literature to science fiction, from magazines like
the New Yorker and Entertainment Weekly to comics.
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| Mark Siegel |
“I've read some books on the computer, but for me, there are a few
problems with e-books,” he said.
Siegel finds the number of titles to be limited and the available
e-books to be overpriced. Plus, he said, reading text on the screen is
generally more tiring on the eyes than reading text on paper.
As someone who maintains a daily
blog, Siegel added, “I spend way too much time in front of the computer
as it is, and I don't want to be chained to my desk if I want to read a book.”
If he were to design the ideal reading device for people with
disabilities, Siegel said it would be an easily portable tool to display
magazines, newspapers and standard books with a resolution that rivals paper.
Users could give voice commands to turn "pages" and highlight text, and readers
with low vision could use the device’s speech output feature.
Then, not only would it have a storage capacity similar to that of an
iPod, but it would also be widely supported by publishers committed to
digitizing their libraries and making works available and affordable.
Siegel’s e-book concept is still futuristic, but companies that
produce handheld devices appear to be heading toward what Siegel described.
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| Sony Reader |
The new Sony Reader, for example, to be released this spring, was “specifically
designed for electronic book reading,” said Valerie Motis, spokesperson for
Sony Electronics. “Consumers told us the device needed to be lightweight and
extremely portable, have a long battery life, and use a display technology that
would be comfortable for reading long-form content such as books.”
Weighing 8.8 ounces, the Sony Reader can store hundreds of books in
internal memory with the addition of an optional memory card. It can also store
and display personal documents in Adobe PDF format, favorite Web content like
blogs or news feeds, and JPEG photos.
Although Motis was unable to specify benefits for people with
neuromuscular diseases, she said, “The one-hand, one-button controls make the
device easy to use for people with a limited range-of-motion, and the ability
to increase font size with one button makes the product ideal for those with
impaired eyesight.”
When the Sony Reader is available, e-books can be purchased online at
Sony’s Connect eBook store.
Palm and Franklin are two other companies that make thousands of e-books
accessible. While their products are designed to be easy to use, the companies
don’t track specifically how people with disabilities use their devices. Use of
these tools does ultimately require finger-eye coordination, so potential
buyers have to consider whether an item is a good fit with their particular
physical capabilities.
E-Mail E-Book
Authors David Diamond and Michael Betcherman have created an original
way to disseminate their electronic work of fiction, The Daughters of Freya.
Instead of downloading the story, about a journalist investigating a cult in
California, readers purchase the book at emailmystery.com and then receive four to five e-mails a day for the
three weeks it takes the mystery to unfold.
“Our e-book introduces a new way of publishing electronically, one
that takes advantage of the creative potential of the medium. The form of the
story is integrated with the medium,” Diamond explained. “Since the e-mails are
sent directly to their inbox, readers experience the mystery in a very personal
way.”
Talking Books
Mark Boatman of Jamestown, N.D., has Duchenne muscular dystrophy and
uses his computer to access books in yet a different way.
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| Mark Boatman |
Boatman, 30, is enrolled in the talking book program of the National Library Service, a part of the
Library of Congress. Through the service, he’s supplied free of charge with a
tape machine and the audiotaped books or magazines he orders via telephone. To
order a book, Boatman searches for titles on the library service Web site. He
can keep a book for as long as six months, and there’s no postage needed to
return materials.
With no useful strength in his hands to hold a book or to turn pages,
Boatman, who mostly enjoys autobiographies, said he’s still able to “read” 8-10
books a year.
The Plustek Book Reader, another
form of talking book, has also recently become available. The device combines
high-speed scanning and high-quality text-to-speech as well as optical
character recognition (OCR). The Reader will thus “read” a scanned book to a
listener; this audio output can even be saved in MP3 format to be listened to
later.
Other Online Finds
Current events and politics are the main reading interests of Juan
Pena of Colorado Springs, Colo.
Always an avid reader, Pena said he used to read a book a month. He
received a diagnosis of amyotrophic lateral sclerosis (ALS) in October 2001,
and he lost the ability to turn pages last year.
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| Juan Pena |
Pena was reading Conquests and Cultures: An International History by Thomas Sowell at the time. “Now I occasionally have somebody bring me the
book so I can read a few pages as they turn them for me,” he said.
Meanwhile, at age 66, he spends most of his time using his computer
to read history databases and online reference sites. Among his favorites are TheHistoryNet.com and BookSpot.com,
which provides links to Project Gutenberg,
known for electronic texts of classic titles, and other e-book services.
“With so much free material available online, I'm reluctant to pay
for online books. However, if current books were available at a reasonable
price,” Pena said he’d consider it.
“Reading is what I do. I rely on reading to fuel my spirit with ideas
and information.”
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