Throw away the key and forget cumbersome diaries with
locks. Now journals are going public in the form of online blogs
(from Web logs), making it easier than ever for computer users who
have neuromuscular diseases to store and share their entries simultaneously.
Blogging has turned into a cultural phenomenon in which
millions participate — either as active writers or as eager
readers. Newspapers nationwide are presenting and promoting blogs.
From teens to seniors, athletes to authors, all kinds of people are
blogging — including some with neuromuscular diseases.
Whether bloggers make their disability the main focus or only mention
it on occasion, it’s perhaps the wide spectrum of ways in which
people can express themselves that makes blogging so colorful and
compelling.
Ebb and Flow
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Mark Siegel |
Mark Siegel, 33, of Minneapolis, has been keeping his blog, The 19th
Floor (www.the19thfloor.net),
since the summer of 2002. As an attorney with SMA
type 2 who has limited mobility of his head and fingers, he uses
the same equipment for blogging that he uses for all his writing:
a HeadMaster system to move the mouse, a p-switch to “click”
and a WiViK on-screen keyboard to type.
Siegel uses Movable Type software to post his musings. He credits
a graphic designer friend for helping him with his blog layout. While
Siegel says he’d like to think of himself as an “old-school”
blogger, he maintains he was actually late getting involved.
“I read a magazine article about blogging and I thought it
might be an interesting experiment,” Siegel said. “I’ve
always thought of myself as a writer and I was looking for ways to
do more writing on a regular basis. This seemed like a good fit.”
On The 19th Floor, Siegel covers a variety of topics, including disability
issues/culture, progressive politics, technology and personal anecdotes.
“I write about whatever strikes a chord with me that day,”
he said. “Sometimes I struggle to find a topic; other times
it just flows. When that happens, it feels really good.”
Siegel tries to blog daily. He estimated he has 50 to 100 regular
readers and he averages about 300 hits a week. When he began blogging,
he only posted once or twice a week. In about a year’s time,
however, Siegel’s writing was noticed by Susannah Breslin, a
popular blogger at the time, and she started linking to The 19th Floor,
which considerably increased the number of visitors.
Readers as far away as Australia and Iceland have left comments on
Siegel’s blog or written him personal e-mails. His blog also
has been included in a couple of magazine and newspaper articles.
He finds the attention unexpected and rewarding.
Siegel said that those who are interested in becoming serious bloggers
need to enjoy writing; they need to write about their passions; and
they need to offer fresh content consistently.
“My primary goal for the blog is to keep increasing readership
and increasing my visibility in the blogosphere.”
Siegel concluded, “I’d love to make blogging at least
a part-time, paying gig, but that will require more than a bit of
luck.” Siegel hopes to be discovered by a newspaper or magazine
and asked to blog for its Web site. Other alternatives, less appealing
to Siegel, might include advertising or charging for downloads.
Meanwhile, ”as long as at least a few people continue to be
interested in what I have to say, I’ll be happy.”
Entering a Conversation
Karen Sampier-Seeley, 41, of Scottsdale, Ariz., is another blogger
with SMA type 2. She started
The View from My Chair (www.digitalKaren.com)
in April 2005 after reading blogs by those ranging from everyday people
to political commentator Michelle Malkin.
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Karen Sampier-Seeley |
Sampier-Seeley manages the posting and designing of her blog with
the use of Dragon NaturallySpeaking dictation software, a small keyboard,
a small mouse and Google’s free Blogger service.
“I blog about any and everything.” Sampier-Seeley elaborated,
“I blog about what it’s like to live with a physical disability.
Other topics include my Christian faith, politics, life with my husband,
restaurant and movie reviews, my cats and sometimes my family members.
Every now and then, I will write about memories of my childhood.”
She explained she reads a number of blogs and comments on them, which
increases the traffic to The View from My Chair. She said, “Blogging
is a conversation, not just a diary.”
Last year, for example, visitors to her blog were critical of her
posts about the mainstream media. Sampier-Seeley was surprised about
their negative comments. She said, “My disability was never
an issue, but my politics and my faith were the brunt of the attacks.”
The overall accessibility of the process is a marvel to her. “One
of the things I like about blogging is that there is no barrier because
of a disability,” she said. “It’s my own little
soapbox in the world with a built-in ramp.
“I don’t have to be a celebrity or have a special speaking
ability or be able to get on a stage in front of a group of people
in order to be heard.”
Accessibility on Call
Blogging services such as LiveJournal, Blogger and MSN Spaces don’t
track their number of bloggers with disabilities, but representatives
from these companies all expressed a willingness to assist people
with disabilities.
Krissy Teegerstrom, LiveJournal product marketing manager, in San
Francisco, said, “If and when our support team receives feedback
that, for example, a certain LiveJournal page is incompatible with
a certain screen reader, we do our best to try and improve that experience.”
Teegerstrom suggested that serving as a LiveJournal volunteer is
a way to keep professional skills fresh and keep connected with a
community.
“Blogging is a great way for anyone to express the whole spectrum
of their feelings, experiences, challenges and triumphs,” she
said. “It’s also a fantastic way to connect with other
people who may share similar experiences or just want to show some
support.”
Jason Goldman, a product manager for Blogger based in Mountain View,
Calif., agreed. “We expect to continue to see an increase in
the number of people who are using the Web as [a] medium of self-expression.
And we also expect that the types of expression will increase to include
more voices and more ways of sharing.”
Blogger has recently introduced tools that work with audio rather
than visual elements so they’re functional for people with limited
eyesight, he said. The company also makes it feasible for people to
post blog entries using alternatives to the Blogger posting interface.
A Microsoft spokesperson, meanwhile, expressed pride in Microsoft’s
long-standing commitment to the disability community. “For two
decades we have been exploring and evolving accessibility solutions
that are integrated with our products. Microsoft’s Accessible
Technology Group (ATG) takes a strategic approach to our accessibility
efforts.”
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Bill Sims |
William “Bill” Sims, 42, is an MSN Spaces blogger who
lives in Brentwood, Tenn. After receiving a diagnosis of amyotrophic
lateral sclerosis (ALS) in December 2004, he took up blogging
to keep those who are interested updated on his health condition.
He began his Never Give Up blog (http://billsims.spaces.msn.com)
in January with the primary goal of covering ALS-related issues.
Sims designed his blog himself. He uses Dasher software for posting,
which enables him to type about 25 words per minute with a mouse.
When he loses the ability to use his hands completely, he plans to
control the Dasher software by using Eye Response Technologies’
hands-free ERICA system.
“I have found my blog to be an incredibly efficient and effective
way to communicate with my family and friends and get the message
out about ALS,” Sims explained. “In general, I try to
keep a balance of serious and funny articles to keep my readers coming
back for more.”
An Added Bonus
Gloria Hamilton, a clinical psychologist at Middle Tennessee State
University, said journaling has been shown to have positive health
benefits, and blogging also may provide answers to questions.
With that said, she cautioned, “Don’t put anything on
a blog that you are not comfortable with anyone else knowing.
“The Internet allows sharing of experiences that provide insight
and suggestions for coping,” Hamilton said. “Blogs also
remind us that other people are dealing with difficult situations,
not just us. It can be a mechanism for providing hope and friendship.”
Michael Chambers, 20, of Walker, Mich., started blogging about three
years ago, because his friends were enjoying the hobby.
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Michael Chambers |
When he began blogging, he posted through DiaryLand.com, but today
Chambers keeps his My Life… blog (http://chairman86.livejournal.com)
on LiveJournal. Found to have Charcot-Marie-Tooth
disease (CMT) in July 2002, he uses a trackball and on-screen
keyboard.
Chambers doesn’t always update his blog daily, but he does
belong to three LiveJournal communities and he posts there periodically,
so he’s sharing material among blogging group members who have
common interests.
The topics he explores are random. For example, sometimes he writes
about what he did that day, and other times he delves into a deeper
topic focusing on relationships or choices he’s made. Whatever
the subject, Chambers loves feedback.
“I was extremely surprised, impressed with the response I got
from fellow bloggers, especially those with disabilities,” Chambers
said. “Before joining LiveJournal, I didn’t know of anyone
else with CMT.”
Tips for Beginning Bloggers
