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Mamafesto Newsletter |
BY DAN KENNEDY | 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. 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. 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." 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. 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." 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 covers media and politics for the Boston Phoenix. |
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