Electronic Parenting or, It Takes A (Listserv) Village to Raise Families with Disabilities
by Dona M. Avery
Right now, there are more than 156 million conversations going on in cyberspace. According to one estimate ("Key"), more than 200 million Americans will be communicating online by the year 2000. Clearly, the popularity of electronic, written dialogue is transforming our view of literacy; and it is changing our interpersonal relationships, as well. The feature of orality, for example, is no longer a precondition to effective conversation; nor is face-to-face proximity required for effective dialogue. This dialogue-with-distance is celebrated by many in the disability culture who, to use Coleman's (1997) term, have been "socially quarantined" and excluded from active participation in society. For this population, the Internet offers far more interpersonal contact than ever before possible. Education, retail products, services, political forums, friendships--the Web embraces all these features of citizenship and brings them right into the home. Technology now affords a way to journey into environments that may never have been explored by many of the 24 million severely disabled people in the United States (Rauscher and McClintock 1995); and virtual communities and advocacy organizations are beginning to populate cyberspace, offering more human connections for the disability culture every day.
The online Opportunities for the Disabled foundation , for instance, was established in 1995, to "provide a more efficient, user friendly approach to accessing and utilizing special needs equipment and services. . .[and] to eliminate the barriers, both physical and societal, that prevent disabled individuals from being fully integrated into society. . . in order for them to achieve more fulfilling, productive and independent lives" (Opportunities).
Cyberspace is still a relatively new frontier, however, as Howard Rheingold (1993) asserts; and it has its own dangers, pitfalls, and swamps that befall the uninitiated. This paper discusses the qualities of purposeful listserv communities, as well as the potential for unhealthy, isolating characteristics of closed collectives that stress an "In-group" symbiosis which prohibits the inclusionary goals of the disability movement.I suggest that the Web should be approached warily and with forewarning, for while it is gratifying to be warmly embraced by a community whose members stand ready to spin a wonderful cocoon of empathy through shared experiences, customs, emotions, and parallel life-situations, there is danger of becoming too comfortable in such a corner of the universe. When solidarity escalates into separatism, persons with disabilities may be seduced into behaviors that result in self-exile from the larger culture. If it is the object of the disability movement to move into and within the mainstream community, virtual neighborhoods should co-construct new and more positive definitions of disability, rehearse coping strategies for interacting with a society that is intolerant of difference, and collaborate in efforts to achieve inclusionary status within the dominant society. As Steven Jones (1997) argues: "If we are to foster community. . . , then we ought to have that sense of being beside each other, whether we are logged on or not. . .we ought to understand that the Internet is not a social world unto itself. . .but that it is part and parcel of a [larger] social world. (The Internet, 30).
This ethnographic discussion of Internet collectives, then, which focuses on virtual villages of parents of disabled children, is offered to further the study of the ways in which disability need not preclude the benefits of communities--nor further isolate this marginalized population--if we remain alert to the potential of virtual "families" to become postmodern equivalents of the hermits in Plato's cave, wherein the clan's knowledge of the world outside is limited, dark, and oppressive.
The Cyberculture of Disability
An enormous part of what it means to be human is having what Scollon (1995) terms, "the compulsion to communicate," and part of the Internet's allure is its diversity of forums for dialogue--beyond the more standard occasions for transactional and interactional discourse (see Brown & Yule, 1983; and Bauman, 1997). According to Rheingold (1993), the Internet can be a "playground," a modern version of the Enlightenment's salon, or a neighborhood bar. There are also virtual neighborhoods that feature a type of "underground" discourse of solidarity, as suggested by Scollon (1995) and Zickmund (1997). Many postings to listserves are of the expressive genre and thus might be considered by Daniell (1994), parallel to the "Dear God letters" that she notes in the compositions of recovering alcoholics. Meanwhile, Selfe and Hilligoss (1994) highlight the many examples of Story in electronic discourse, and suggest that this is in response to America's "narrative sickness." Overall, these authors seem to agree that cyberdialogue results from the impulse to be heard (Daniell), and from the "hunger for community" (Rheingold).
Thanks to such technology as voice-activated computers, screen enlargers, Braille keyboards, and other assistive devices, all these forms of expression--and the sense of community that is derived from them--the social isolation of the disabled is being relieved. The process which bell hooks has called "coming to voice," is now possible, as electronic communication provides the means to achieve individual and group identity, as well as to enjoy active participation inmainstream culture. Because cyberconversations are performed on a more level playing field, where distractions of physical appearance, nonstandard speech, race, gender, and age do not subsume the linguistic features of dialogue itself, it is possible, now, for persons with disabilities to meet the world via keyboard or synthesizer, without the contaminating effects of physicality, prejudgment, or prejudice. The anonymity of the cyberforum is thus helping to emancipate the disability culture from the margins of society.
The freedoms that the Internet provides for the disabled may not immediately effect great or spontaneous social change in our culture's obsessive idealization of beauty, youth, and productivity, however (Mitchell and Snyder, 1997). The disabled have endured a long history of being situated as subalterns, as objects of pity, as burdensome welfare cases, as souls being punished for prior sins--or as "charity cripples," to use Norden's term (1994). Such notions of disability are compounded by the medicoscientific impulse to "cure" or "fix" physical anomalies, and to abort the "defective" fetus or clone the "perfect" body. It would be abnormal, given these conditions, if society did not tend to conflate the notion of disability with "disaster."
"Disastrous" or "tragic" are sympathy tokens readily offered to parents of the disabled, as well as siblings and spouses. Persons with disabling conditions are often objectified as "victims," and are made to feel apologetic or even ashamed for their "failure" to meet our culture's obsessive standards of perfection. But for each of those 24-million severely disabled Americans who are sometimes cast in the role of pariah, there are at least as many "peripherally marginalized" family members who are also condemned to avoidance and isolation caused by phobic responses to disability. This phenomenon follows Goffman's (1963) notion of the "courtesy stigma," as I have learned, being the parent of a disabled son, myself. I have often been the object of The Stare; I have been denied jobs because employers assume that disability in the family means excessive work absences; I have lost many friends whose lifestyles and parenting obligations were so different from my own that we had nothing in common; I have been made to feel guilty because my son was getting more attention than his cousins. There are many more examples of the courtesy stigma: I know of a mother who was confronted by a stranger who insinuated that the mother's child was in a wheelchair due to the mother's drug use while pregnant. And then there is the brother whose friends would not come to play at his house, because the boy's "crippled" sister was a "freak"; and the grandmother who was told that "Downs' kids" like her grandson are always so lovable, and that "everyone should have one, for a pet." Having disability in the family is, as Emily Perl Kingsley writes, like taking a plane trip for an Italian vacation, and hearing the stewardess announce, "Welcome to Holland."
Taking Turns at the "Pity Pot"
Due to the consequences of the "courtesy stigma," and the emotional work that we families do to cope with such comments--biting our tongues, hiding our anger, feeling obligated to control our feelings so that others will not be embarrassed--these efforts are rarely understood by anyone who does not have disability in the family. Belonging to a virtual community of other parents of disabled children allows us to vent our emotions with nonjudgmental others who offer empathy and understanding, because they share parallel situations in their own lives. One mother who belongs to such a listserv writes that her cyber-pals have comforted her more than once:
I have a wonderful support system. Great family, friends, etc. . . . BUT I know very few people who really know what I go through. Once I found the list[serv], I was no longer alone. I can share good things and bad without fear. . . I cry, I laugh. I have made some real friends too. (Marianne, personal Email, 4 Dec. 1997)
The families of the disabled have as crucial a need for self-expression and emotional support as do the disabled themselves, yet neither these disabling consequences of the "courtesy stigma" nor the online culture of disability have been thoroughly studied. Autobiographical works by disabled writers have helped the general public realize the social consequences of a disabling society (see Polly Black's "How it Feels to be a Handicapped Child" ; and also Beiser 1989; Callahan 1990; Finger 1990; Fries 1997; Hockenberry 1995; Kovic 1976; Krementz 1992; Mairs 1997; Murphy 1987; Shapiro 1993; Zola 1982). And Braithwaite (1991), Goffman (1971), and Reitzes & Mutran (1994) have shown that emotion management is one of the more difficult-- and least understood---byproducts of disability. But as for the family members, there is a paucity of literature; and it is rare even to find professional counselors who understand the coping strategies that disbility demands. If the family is also deprived of the opportunity to dialogue with peers who know disability, life is a bewildering and depressing proposition indeed. While nearly everyone struggles with the ideological debates currently surrounding "quality of life" issues, it is the young parents of disabled children who may agonize the most. Says one mother in a dark moment:
If there was a cure, if there was a pill, if there was a trade off, I would do anything for a cure for Michael. I would trade my [mobility] for his in a second. . . [I]f there is a Devil, I would sell my soul tomorrow and go happily to Hell smiling all the way to take Michael's [disability] away. After all, in a sense I have been there already. (Lori Vest)
When grief runs this deeply, it is difficult to resist the cultural inscription of "tragic victim," for either oneself or one's child. As Nancy Mairs implies, when hegemonic ideals of perfection are promoted at every turn, and beauty and agility are constantly reified in the media and other social institutions, what would be unusual is if families with disability were not sometimes prone to "personal depression, 'self-loathing,' and debilitating paranoia'" (Mairs, qtd. in Mitchell and Snyder, 1997). That depression and paranoia often penetrate the "safe" environment of disability listservs, and eventually nearly every member may want a turn at what is known in one virtual community as "the pity pot." The unwritten bylaws, for cyber groups whose members understand such "unconventional" parenthood, are such that fellow members extend empathy for those suffering the frequent disappointments that attend disability. Supportive and nurturing overtures from the group can help a member cope with the negatives in an oppressive society. Rheingold and others have claimed that the virtual community "speaks to vast numbers of disenfranchised people. . .[whose] need for human association and a sense of belonging" is strong, because of "distrust or fear of our neighbors" (Fernback, 40); and for families with disability, the emotions caused by disenfranchisement and distrust may surface more often than we'd like. These families must cope with "failed bodies, failed marriages, failed jobs, failed dreams," writes Jacqueline Rinaldi (1997) (823); and only through the power of the utterance, as it is offered in expressive release and in nurturing comfort, can those emotions be relieved.
Having raised my own son long before cyberspaceopened for business and social uses, I can nevertheless appreciate the value of having such a forum for emotional release as a parent moves from the self-blame and fear that the stork delivers alongside the "abnormal" baby--to the point when pride, joy, and humor are realized as that baby grows and conquers physical limitations. The online community must be a haven for parents of the disabled, for it offers the freedom to express anger after an insensitive remark by a doctor, or frustration with a stubborn school board, or fatigue after another therapy session, or shame caused by strangers' stares. After endless demands for suprahuman management of emotions like these, the opportunity to visit an internet neighborhood formed of like-minded people can be, as Fernback (1997) suggests, like coming home to a friendly village full of trusted members who "remind us who we are. . . ." (37), and who appreciate the hard work of controlling volatile emotions. Having cyberpals available even during the hours when the real community is asleep must be very comforting; I remember the midnight letters I used to write during the sleepless nights that often followed doctors' visits or IEP evaluations--and then having to wait a week or more before a distant friend sent a life- affirming reply. Today's wee-hour communiques receive feedback within moments, helping the parent rest easier and prepare for the days to come.
Although the medium has changed, the style of those midnight letters is very similar. They often resemble the "Dear Diary" genre of language, addressed to no one in particular. Yet these are the posts that garner the most replies, for they express feelings with which most of the parents identify. One mother's moving post reads:
Subject: Feeling very sad
Yes, many of the members could answer, seeing one's child imprisoned in the permanence of chrome and rubber can tear a parent's heart to shreds. But, Stacey, time will heal the wound. You must have noticed how proud Erin is of her new mobility; forget those normalcy dreams you once had; they are society's hangups, not Erin's, and not yours.
To know that such an empathetic audience is always available--for the virtual support-group won't even close for the holidays; and someone will be awake and ready to talk at any time of day or night, because members are located all around the globe--is reassuring beyond measure. Such a diverse membership with polyvocality and no linguistic customs of turn- taking, also means that there will be multiple and varied perspectives on any issue: If a dialogue thread becomes too one-dimensional, or if a member's post seems too self- absorbed, there is always someone ready to interject with a "reality check," asking the member to "stop whining," for it won't do the child any good. As Fernback (1997) asserts, a cybercommunity can be both "sacred and profane. . . ; it is a battleground and a nirvana. . . . Cyberspace is an arena of power" (37).
The "power" factor of these cyber-colliseums would not have occurred to me when I was a young parent involved in disability, twenty years ago; back then, I was far more interested in surviving, coping, and learning as much about my son's condition as possible. But by virtue of maturity, and the recognition that it is the disabling practices and beliefs of our society that sets limits for my son's freedoms, I am now qualified to join the Mothers from Hell , an online community whose website announces that members "staunchly advocate for the rights of our children with disabilities. . . .We take our children's needs very seriously. . . Yes, we are activists, and proud of it. (Mothers, Homepage). These online, New Age "suffragettes" for social reform have the stated mission of "creating more accepting and inclusive environments for our children." Their political framing of the collective's aim resembles the emancipatory action recommended by Susan Scollon (1995), when she claims that collective dialogue is the only way out of oppression. "The colonized self," writes Scollon, "must be freed through communication" (qtd. in Ron Scollon, 17). The Mothers-from-Hell members decry the fact that "mothers and fathers of children with disabilities have historically been silenced by an unnecessary shame. Our children are precious jewels; it is society that is disabled" (Mothers, Strengths) The advocacy focus of this cyberculture is thus able to co-construct a redefinition of disability that not only supports the online families but may help liberate the entire disability culture, as well.
Another electronic village of parents who are active in seeking the rights of inclusion for their children with disabilities is PA-PAL. The homepage for this Pennsylvania organization announces that the group's purpose is to provide "an e-mail network for parents of children with special needs and disabilities. . . . through the sharing of information, resources, and our personal experiences" (PA-PAL). The clearly stated aim is to: "Enhance the quality of our children's lives. . . .[to] advocate at a systems and policy making level. . . .[and to] Provide a forum to share our successes, frustrations and challenges in our personal lives." The parent-collective's inviting homepage also claims that PA-PAL members "say what we think, without trying to hurt. You will never find a more loving, supportive place to be. If this sounds like what you have been looking for, 'Welcome home.'"
There are virtual communities like PA-PAL and Mothers from Hell evolving daily, forming listservs, electronic bulletin boards, IRCs, and "MOOs" that invite participation from the disability culture. Yet because the ethereal parameters of cybercommunities are still very blurred, one should be no less as selective in choosing an online neighborhood as when one is shopping for a material house. The new, postmodern community of reality, according to Schuler (1996), will have "a high degree of awareness . . .and principles and purpose," and will be focused around action, around "doing," and around achieving particular goals (qtd. in Jones, The Internet, 10) (1997). Yet, Steven Jones argues that not all virtual communities are active, aware, or achieving; for online groups are often frequented by lurkers who hang around as voyeurs, rather than actors. Like "old men who fill the reading rooms of branch public libraries," lurkers passively visit an Internet group "because it is a refuge, a place to be among others of the same lot (Haggart, 1957, qtd. in Jones, The Internet, 14)(emphasis added). As much as being "of the same lot" makes members feel like family, however, a more dynamic community evolves from having more in common than similar life-conditions. As Jones (1997) asserts, many Internet collectives are merely "parallel groupings of people headed in the same direction for a time" (The Internet, 17).
Because a disability-list membership may represent various physical abilities, as well as diversity in age, class, education, stages of recovery, or stages of acceptance, members are constantly "en-LIST-ing" and then deserting, depending on whether or not the current conversation topic resonates with their personal needs. Some new recruits drop in very briefly, much as they visit libraries for new information. Other members will remain on the list only to lurk, gleaning through the conversation such feelings as "luck" or "blessedness," based on others' deeper involvement in the "tragedy" of disability. Perhaps half the members at any given time will be "old-timers," visiting the Net for a daily reminder of their collective identity and the reassurance that "there are others like us and. . . others know we exist" (16). But for virtual collectives to become communities, as Jones asserts, there must be "commitment, interaction, and. . . counterbalance to the spectacle" (16).Cyberspace should be exploited for its interpersonal connections and the identity-building strengths; it should be utilized for more than its function as a repository from which list members "offload" the stories and memories of others (Fernback, 37). Yet some online groups seem to fulfill only a cheerleading role, as they support a member through his or her time on the "pity pot." If the disabled and their families are to succeed at "coming to voice" through electronic literacy, the listserv should have a larger aim than as stage for the venting of anger, grief, or guilt. Emotions must be expressed, but they should not supercede the more active work to be done in resituating disability as a social construct. Members should be able to remind one another that feelings of "failure" are, more accurately, symptoms of society's failure to value its disabled citizens.
Where many online communities become cyberswamps is in the tendency to nurture, long after the time when nudging someone to action would be more appropriate. Our-Kids is an example of a more positive style of electronic parenting, as evidenced in its membership of more than 700 parents and caregivers (grandparents, foster parents, etc.) of children with disabilities, and which has participants from more than thirty countries. Formed in 1993, the primary mission of the Our-Kids Listserv, according to the homepage, "is to provide information and support for Our-Kids." Secondarily, the list seeks sharing of information and support among the children's caregivers--which include not only parents, but "doctors, therapists, educators and a few other organizations" (Randy, listowner, personal mail, 8 Dec. 1997). This virtual community understands that venting emotions and celebrating milestones are important for such parents and caregivers, but the members are also "interested in promoting awareness and support of children with disABILITIES," through the grass-roots-organized "Silver Ribbon Campaign."
As we come to know our children and the extended family that we meet online; as we "grow" into disability parenting, there are other things we want to share, such as joy, pride, love, and humor. For these occasions, too, parents need a connection to other families with disability. The computer then becomes a conduit between friends; it is a postman that delivers at all hours of day or night; it is a diary, that talks back; it is a vital link to the life-support of community. For some, it is a daily vitamin. Says one mother of a child with cerebral palsy:
"It was last Christmas, when we got the computer and hooked up to the net, that we found this list. It was the best thing that could have happened, both for education and also for support. Since then, I try to read the posts every day (if I don't it piles up too much, but I really look forward to it. . . .I've learned a lot about different types of CP . . . I thank the people on the listserve for including me in their family." (Cheryl, personal Email, 4 Dec. 1997) (emphasis added)
"Family" can have polyvalent definitions, depending on a listserv's purpose, its internal structure, the personalities of the members, and the collective identity of the online group. Fernback (1997) writes that many virtual collectives "can become self-seeking, atomized, even solipsistic communities that lack a social role in the larger collectivity. . .Roots in a virtual community are shallow at best" (41). And when a controversy arises, says Fernback, "emotions are stirred, moralistic rhetoric is employed, the collective personality is asserted, and the controversy revolves around. . .downgrading their enemies" in a regressive performance of identity politics (42).This phenomenon occurred when I recently visited an online group to which I belonged a year ago, for the purposes of researching this article. I was met with hostility and threats, and experienced my first "flaming" for what one member called my "invasion" of the community.
The member who arranged the pyre for my roasting is, as I remembered, an active poster to the list. He was quick to offer advice, often served as the voice of reason, and posted the occasional bit of humor. I had emailed he and five others a polite note, reminding them of my former membership, and asking their permission to quote from seven of their postings to the list--all of which were archived on the List's website. When it was this "old friend," then, who instigated the flaming, I was surprised; but when he kept reigniting the embers until there were 58 angry postings to the list and a couple dozen to my personal Email address, all within the space of a week, I was bewildered. He did nothing to correct the group consensus that I was a mercenary researcher who had raped the archives and had published everyone's secrets, without asking for permission.
The caustic and accusing messages that I received as personal Email alerted me to the fact that someone had forwarded my permission-request to the whole List, so I checked the online archives and found that I was the subject of the virtual equivalent of backyard gossip. I sent an Email apology to the Listowner, and asked him to forward it to the List; but this move put my adversary in a face-saving situation, whereby anything he might say in an attempt to stop the hysterics would cast doubt on himself. His response was to postmore cyberhate, situating "self as rational and Other as irrational, self as hard-working and Other as lazy and stupid"--exactly as Zickmund (1997) describes the "colonizer's" behavior toward subalterns (192). The group, meanwhile, shifted into a call-and-response strategy, using "ad hominem and hyperbole," precisely the behavior that Zickmund predicts for online groups feeling threatened: there was now "linguistic warfare" being waged and, rather than accept my apology, the listmembers sought "not to end the transaction with the opponent but to provoke the respondent to. . .extremism" (201).
Thankfully, I received some off-list messages in my support, which prevented the long week of harrassment from becoming unbearable. One member, in classic understatement, said: "I know on given days depending on how things are going, each of us on the [disability] list can get crotchety" (C, personal Email, 4 Dec. 1997). Another wrote, "My apologies for the list and for humanity" (D, personal Email, 4 Dec. 1997). A third member wrote me early in the battle, to tell me the postings to the list were running "4 to 3, in your favor" (M, personal Email, 3 Dec. 1997). But the collective behavior of my former "family" is worthy of note for any scholars who pursue similar studies. The feature of anonymity that enables the cyberforum to inspire personal revelations of grief, also allows Internet users to commit virtual violence, for the risks of recognition and the consequences of antisocial behavior that face-to-face communiques entail, are absent in cyberspace. We "tend to be bolder, riskier, sometimes more rude. . . ." in our cyberidentities, as Fernback argues(37).These"communities of [common] interest are closed places" (41), that harbor resistance against the culture writ large (53), and the members may exhibit "tribalism" and xenophobia when foreigners threaten their (virtual) walled neighborhood. Zickmund (1997) warns that emotions escalate especially when there is scholarly research involved, such as was my goal for this article. The "academic voice extend[s] from the outside," writes Zickmund, "from a culture that [is] foreign to the previously established parameters of the. . . group" (192). Thus, "the academic--in her formal and polite language--bec[omes] interpreted as 'Evil'"(203).
This incident of virtual violence seemed to epitomize Zickmund's claim that closed communities live "in hermetic isolation." When virtual "families" erect walled villages for defense, though, is it not at their own social expense? To be capable of hurling such vitriol through cyberspace--at a former "family" member--suggests that some members of this group are using E-discourse to nurture paranoia about the world "out there." Would it not make more sense to exploit intragroup dialogue opportunities for the purposes of learning coping skills and rehearsing strategies that will ease the stigmatized person's entry into the dominant public sphere?
Village, or Fort? View from across the Moat
Clearly, Fernback's notion of "tribalism" was in play here, effecting an Us-versus-Them mentality within this cyber clan, which seemed to be led by a warrior chief who was not even the listowner--just a member who enjoyed a good hunt. How this list had changed, since I first "met" the group, when there were just 32 active posters, compared to the 141 members active in November 1997. The posting activity had increased by some 300 percent which, I realized, must be a serious drain on the parents' limited time. Skimming through some of the archived posts, I also noticed that, where last year's messages were very often epistolary in genre and often a printout page or more in length, November's messages had a median length of only 21 lines of text. Further, while I was glad to recognize that the "footers" of the Email posts had sustained the tradition of listing family members' names and medical diagnoses-- I sensed a change in the choice of subjects for discussion. A year ago, the subject lines announced birthday greetings and condolences, farewells and welcomes, vacation tips and job-search assistance. Often, within the message itself, there were smiley faces or other emoticons, and sometimes even wild keyboard-art that must have taken a long time to complete. These were small but apprecited injections of personality and pathos into the impersonal spaces of cybermail text. Also, each of the 32 active members I knew last year seemed to havea clear persona--from "A" who fulfilled the "Welcome Wagon" function of enculturating new members, to "Z"--who only had negative things to say about everything, but who was the first to defend the "Happy Birthdays" and other off-topic postings that once came under attack for being too "frivolous."
By the end of 1997, though, the list had adopted a heavier tone, judging from the topic choices (and a futile search for emoticons or art or frivolity in the messages). While I have not read every one of the 300-plus messages posted during the month of November, I note that three main categories of interest seemed to dominate group discussion:
MEDICAL Concerns: There were 160 postings under 12 subjects, dealing with such topics as immunization, therapy, feeding problems, and diagnoses.
SOCIAL CONCERNS: There were 70 postings, dealing with 8 topics, including subject-line information about AOL Chats, computers, an upcoming conference, and three headers that indicated anger or irritation: "Ignorant People" garnered 15 comments; "Dumb Doctor Comments" received 14 replies, and "Idiots in Real Life" got 3 responses.
GRIEF/DEPRESSION/GUILT: These postings numbered 147, and were inspired by these eleven titles: Long, Depressing Rant (6 replies) Anyone Up? Need to Talk (6) Feeling Very Sad (19) Tears!!! (6) God/Guilt (3 replies) Guilt & All That (9) Guilt & Blame (5) Guilt & God (4) Guilt & Relationship w/God (21) Guilt/Blame (6) Guilt (7)
A thorough linguistic analysis of message content, of course, might categorize the messages differently. For the purposes of this paper, though, the Subject-lines chosen by the authors seem to represent quite a contrastive mood, when compared to the topics I remember from last year. Nearly half of the "Social" category includes messages of an "In-group" nature, directed at alien Others; i.e. assertive or angry stances towards doctors and the outside world in general. Also, the "Social" category is less than half the size of the "Medical" category, indicating that the subjects this group finds most worthy of discussion are those dealing with "normalcy" or those viewing disability from a "cure" perspective. Finally, the category that I've named "Grief/Depression/Guilt" is very nearly as large as the medically oriented classification. It appears that, between the self-blame, the sadness, and the desire for "normalcy," families with disability, like members of the dominant culture, tend to conflate the notions of difference and "defective," and to look to the medical community or to a higher power to "fix" the defects.
My overarching impression from this very-preliminary study is that parenting of special-needs children is a performative act, and is in conflict with dominant ideologies. One cannot study for the role of such parenthood. There is no apprenticeship, no tradition, and no rehearsal. Yet the unsuspecting couple that is recruited for the part, have themselves been enculturated by a society that reifies beauty and demonizes difference. When disabilities are added to the set, the script of parenting is irreversibly changed: The actors discover they don't know their lines; the audience files out in disappointment or horror; yet, the play must go on. In time, and within the community of an actors' guild made up of other parents of special children, the players might "come to voice,", learn a repertoire of uncommon (medical) words, and advocate changes in the set so as to make mobility, sound, and presence more dynamic. Without that supportive parents' guild, though, the stunned actors play out their roles as if in a trance, adlibbing when possible, cringing when the house lights come on and expose their tears of grief and self-blame. This latter troupe performs little but melodrama, which is not something most audiences care to watch.
Online collectives that focus largely on the medical or emotional aspects of disability will make few cultural impressions; and empowerment will remain a distant goal for the disability culture, as long as the villagers' self-embrace prevents their venturing into the larger social circle. But those cybervillages that set emancipatory goals and actively participate in the co-construction of new roles for families with disability, will interest larger and more diverse audiences in the talents of persons with disabilities. Such acceptance can only enhance the living theatre of humanity.
Dona Avery (firstname.lastname@example.org ) and her son, Lynn (born with cerebral palsy), began their college careers at Arizona State University together, after having lived in Denver through Lynn's high-school years. Lynn now holds a BA degree, while Dona is at the dissertation stage of a PhD in Rhetoric/Linguistics, and teaches computer-assisted English classes at ASU. They are a four-computer family.
Copyright © 1998 by Dona Avery. All Rights Reserved.