Not alone anymore

The Internet allows disabled people and their loved ones to find resources -- and community.


Dan Kennedy
September 17, 1997 8:47PM (UTC)

Maybe if the Internet had been more than a glimmer in the eyes of a few
geeks back in 1992, we never would have taken the geneticist at her word --
and thus endangered the life of our little girl.

When Dr. X diagnosed our then-newborn daughter, Rebecca, with
achondroplasia -- the most common form of dwarfism -- five years ago, she
was remarkably upbeat and positive. Yes, she said, Becky will be only four
feet tall as an adult, but her health should be fine. Yes, her intelligence
and life span should be normal. Yes, you should just go home and enjoy your
baby.

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So -- after a period of adjustment to this unexpected reality -- we did.
Which is why it was such a shock five months later, when Becky nearly died
from a pneumonia-like virus. It turned out that Becky had several
respiratory problems common in dwarf babies: too-small airways, a rib cage
so tiny she couldn't fully expand her lungs, and a partial blockage in her
windpipe that was especially pronounced when she slept. Dr. X hadn't told
us about any of this. And in our ignorance and isolation, we had only just
begun to pay attention to Becky's snoring and night sweats, symptoms of
problems far more serious than we realized. Those problems transformed what
should have been no worse than a bad cold into a life-threatening
emergency.

The solution was drastic. Becky had to have a tracheotomy, with
supplemental oxygen, for more than two years. Eventually Becky outgrew her
problems, and today she's a happy, healthy 5-year-old. But my wife,
Barbara, and I resolved that no parent -- or, at least, no parent with a
computer and modem -- should have to go through what we went through alone.
In early 1995, with encouragement from the then-president of Little People
of America (LPA), Ruth Ricker, I set up a Usenet group,
alt.support.dwarfism, and a "Frequently Asked Questions" document, which I
updated regularly. A year later, Nancy Peterson, a short-statured LPA member
who was more Net-savvy than I, put together the Dwarfism Home Page and set up a
private mailing list to replace alt.support.dwarfism, which had been
hampered by arcane technical problems.

Today, anyone searching Yahoo!'s
disability resources
or any of the other major search engines will
instantly be connected to our Web site. The mailing list -- the Dwarfism
Listserv, as it's come to be known -- has attracted some 350 members from
around the world who share information, stories, complaints, triumphs and
tragedies. And as befits a forum that was started both by a dwarf adult and
the "average-size" (to use the politically correct term favored by many in
the dwarfism community) parent of a dwarf child, the list is one of the few
places, outside the annual LPA national convention, where dwarfs and
non-dwarfs can get to know one another.

Within the disability culture, the rise of dwarfspace is hardly unique.
Poke around the Internet and you'll find hundreds of resources for
conditions ranging from Down syndrome to attention deficit/hyperactivity
disorder (ADHD), from cerebral palsy to muscular dystrophy, from fetal
alcohol syndrome to paralysis. There are Web sites, mailing lists, Usenet
groups and chat rooms.

These online disability groups are both a symptom and a cause of larger changes within society. For at least the past two decades, people with disabilities have been struggling to define themselves as part of the
mainstream, as something other than a problem to be dealt with by the
medical establishment, institutions and the like. Some, such as the
profoundly deaf, have become downright militant, insisting that their
disability is not a negative but is rather a difference to be respected,
akin to skin color or sexual orientation. At the same time, parents of
disabled kids, their blind faith in doctors diminished by the same cultural
forces that have battered all authority figures, have increasingly sought
to take charge of their own kids' care. The Internet has accelerated both
of these trends because of the unparalleled ease with which like-minded
people can form communities.

If there's a Disability Central on the Internet, it's Internet Resources for Special Children
(IRSC). This award-winning Web site was started last year by Julio
Ciamarra, a computer professional from North Bend, Ohio, whose 13-year-old
son, Robert, has cerebral palsy, epilepsy and moderate retardation. IRSC
pulls together a wide array of Net resources pertaining to different types
of disabilities, legal rights, medical information, etc. Ciamarra
says that IRSC has attracted some 33,000 visitors -- a tiny fraction of the
potential audience, since he estimates there are some 100 million disabled
children in the developed world.

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In an interview conducted by e-mail, Ciamarra expresses himself mainly in
the stilted language of the advocate, referring to "children with
disABILITIES" and writing sentences such as, "Every disABLEd child has the
right to receive special care and training -- to help them achieve the
greatest possible self-reliance, and to lead a full and active life in
society."

Yet there's also a more poignant aspect to Ciamarra's activism, and that's
when he talks about the isolation he and his wife -- now his ex-wife --
felt in trying to raise a disabled child. "Jan and I were never offered any
counseling 13 years ago, and as a result, Jan watched over Robert and I
took care of our other two sons," Ciamarra says. "Before we knew it, we
were miles apart and had no idea how we got there. We both feel that this
could have been avoided if we had an opportunity to attend counseling
sessions. PLEASE DO NOT LET THIS AWFUL TRAGEDY HAPPEN TO YOU."

Indeed, the Internet can be vital in easing the oppressive isolation that
wears down the parents of disabled kids. In a recent posting on a bulletin
board for parents of kids with ADHD, the desperation of the mother of a
5-year-old son was palpable: "He ripped the tail off his gerbil. He beat
six of his grandfather's quail to death with a stick. He kicked the pet
rabbit to death ... I am a completely worried single parent. Someone
please reassure me via e-mail. He is my one and only little boy."

The ADHD bulletin board is part of a Web site
run by Brandi Valentine, an apprentice tattoo artist from
Sacramento whose 9-year-old son, James, has ADHD. (She also has a
12-year-old daughter.) "Parents dealing with an ADHD child are often living
lives that have become chaotic and nightmarish," Valentine says. "Enter the
Internet, open 24 hours. You have access to information and others who
share the same problems and concerns. Parents need to know that they are
not responsible for their child's disability. These parents take on so much
guilt trying to figure out what they might have done to cause their child
to be stricken with such a disorder."

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As with the dwarfism community, Valentine's site, which attracts about
15,000 people per month, brings together adults with ADHD and parents of
kids with the condition. Such intermingling is an important part of online
disability resources. It's crucial that parents learn that there are happy,
successful adults living with the same disability as their kids. Certainly
for Barbara and me, meeting dozens of adult dwarfs online has been an
enormous help in understanding that Becky's future is every bit as bright
as that of her 6-year-old brother, Timothy.

Unfortunately, not all disabilities lend themselves to such positive
interaction. At the Down Syndrome WWW
Page
and its accompanying mailing list, there is plenty of optimism,
inspiration and information. What it lacks -- at least during the time I
monitored the list -- is postings from people with Down syndrome.

And some conditions evoke outright despair. Shortly after Allen Goldberg
and Laurie Strongin's son, Henry, was born, nearly two years ago, he was
diagnosed with Fanconi anemia, an invariably fatal disease. Goldberg, a
webmaster for the National Association of Broadcasters in Washington, D.C.,
turned to the Web to research Henry's condition, and was soon plugged in to
the Fanconi Anemia Research
Fund.

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Shortly thereafter Goldberg set up a Web site about Henry,
"primarily so people could get to know him and check out how cute he was,
and secondly to help provide information to other families." The Web site,
in combination with an e-mail solicitation, has already raised $70,000 for
the research fund. The Strongin Goldbergs have also taken over a newsletter
for families affected by Fanconi anemia, and publish it on their Web
site. "The sense
of community is real," says Goldberg.

Ultimately, the sense of community the Internet can foster is what makes it
such a compelling tool for disabled people and parents. When I started the
dwarfism Usenet group and the FAQ, I was a
bit leery: as an average-size adult, I worried that some dwarfs would
interpret my forwardness as condescending. Before long, though, Net-savvy
dwarfs had taken the lead, putting together Web sites of their own, on
subjects ranging from photos taken at the annual LPA convention to
information on special products, such as pedal-extenders for cars. I still
compile the FAQ, but these days most of the work consists of keeping tabs
on other sites.

The dynamic between dwarf adults and average-size parents is what gives
dwarfspace much of its richness, as well as occasional tension. New parents
lamenting their child's diagnosis, or searching for information about
limb-lengthening surgery (a dangerous, painful and utterly unnecessary
procedure), learn quickly to get over their self-pity or risk getting
flamed. "When some new average-size parents come on to the list,
they seem not to think that there might be adult dwarfs on as well -- or
maybe they aren't sure of the intent of the list, thinking it might be a
group of adults 'looking for a cure,'" says Jill Taylor, a dwarf from
Phoenix. On the other hand, the pride many adult dwarfs express about
their difference is a valuable message for parents to impart to their
dwarf kids. "The list keeps me from feeling as if I live under a rock
somewhere," says Patty Abrams, an average-size mother from Long Island
whose 7-year-old daughter, Alysha, is a dwarf. "It also gives me an
added sense of camaraderie."

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Vital as that is, there is one drawback: Parents and disabled adults who
seek information and friendship online are a self-selecting group, a
highly motivated elite that tends to be already involved in support
organizations and that is accustomed to seeking out answers to their
questions. Even when Internet access becomes ubiquitous, there will remain
the challenge of how to reach out to those who suffer in silence.


Dan Kennedy

Dan Kennedy is the media reporter for the Boston Phoenix.

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