Virtual Disability: Sameness and Difference in an Electronic Support Group

Gerald L. Gold

 

            This chapter focuses on everyday events and the making of a distinctive identity  in a computer mediated or virtual support group for persons with disability, with specific examples from MSN-L, a community focused on persons with multiple sclerosis.  Virtual support communities, like MSN-L, are constructed of social networks of "weak ties" (Garnovetter 1981) that facilitate a frequent, often frenetic exchange of information and on more infrequent occasions, exchanges of personal assistance.  Those who 'join' or participate in a virtual support community often do so as a way to acquire access to otherwise unavailable information on disability and chronic  Illness (MS and others.) This may provide access to medical or alternative guarantees and  more frequently to information about clinical experiences and services. Enhancing this access, virtual support groups are not limited by scheduled meetings and fixed gathering places.  Like face-to-face groups, virtual support groups often include persons with “experiential authority” (Borkman 1990: 20) who become foci of knowledgeable information and of resistance to the negative gaze of outsiders.

            My first 'visits' to MSN-L were fortuitous, one of many opportunities to find out more about the debilitating illness which I had recently acquired.  After recurring visits, I began to take notes on what I was 'hearing,' and after several months, I found that my virtual files became an equivalent form of fieldnotes and my frequent visits were equivalent to my anthropological interviewing experience, separated in both time in space (Gold 2001,) and became a form of fieldwork in which my participant observation is an extension of the research experiences.  I introduce this metamorphosis of experience in the previous chapter where I explore the relationship between my geographically dispersed fieldwork in Cajun Louisiana and a subsequent focus on cyberspace as a 'place,' and site for anthropological, geographical and sociological inquiry.  This chapter expands these initial experiences in the participant observation study of MSN-L, support group for multiple sclerosis, where identities are constantly renegotiated, in both public and private communications.  The volume of public communication, obligates participants to sample message threads and select what is relevant to their situation.  The rhetoric, privacy and secrecy of private messages, like the selectiveness of private fieldwork encounters, was slowly sampled through successive experiences.[1]

            Unlike face-to-face participant observation, where it is not possible to monitor all public conversations, the public nature of the message thread in cyberspace, becomes the focus of total community attention. The immediacy of these public messages builds a network where interaction is on a first-name  basis, although the context of interaction is that of an entire community.  Public and private coexist in a complex interaction, within which a MSN-L 'agenda' is continuously reconstructed (difference).  Following a message “thread” which leads to common narratives (sameness) which are repeated in seeming to expressions of community.[2]

            Some communications are  private posts[1] which cannot be seen by other members of a newsgroup or mailing list, moreover, on account of their private character and invisibility, in group boundaries between experiential and professional authority can become blurred. The process of blurring identities and leveling statuses and gender also occurs in most messages as these circumvent barriers such as body shape, age, gender and class. List participants become part of an "imagined community" (Anderson 1982) of persons living with MS and their caregivers.  The conclusion of this chapter discusses the inability of this seeming  unity  to lead to political action and deal with national differences in an agenda of disability support.

            In their public guise, disability support groups are forums which discuss disabilities by providing a nonmedical and nonclinical milieu to consider and ask for suggestions about medical advice, or ask about options such as alternate practitioners or alternative medicines. Face-to-face groups have been conventional forums for support, but despite the obvious advantages of direct interaction, they are small and can only be accessed at fixed times and within a limited geographic range.  This contrasts with the egalitarianism and extensive networks of virtual support where a an 'electronic  commons' that can circumvent differences in rank and gender.

            The focal point of this chapter is an example of a virtual or computer mediated support group for multiple sclerosis which is a cluster of identity and the basis of  a “community” which is an accessible “place” for persons with disability and their caregivers. Though there has been considerable recent research with virtual communities, little of this research focuses on support groups of disabled persons and their everyday communication. The significance of virtual support for persons with disability is partially in the physical difficulty of assembling dispersed persons into working groups. However, it  is also related to  the recent analytical metaphor of a disability consciousness and the genesis of  the concept of disability culture (Brown et al 1995.)

            Recent research on communities in cyberspace, emphasizes  the capacity of virtual  networks  to benefit from the "strength of weak ties," an idea  initially introduced by Garnovetter(1982) in studies of  urban networks, but this metaphor is equally applicable to global support communities (Milena and Wellman 1997). Others emphasize the altruism of generalized reciprocity in virtual communities which characterize the giving of  information and support without the expectation of immediate return (Rhinegold 1994 , Kollock 1997.) As this chapter demonstrates, members of virtual disability communities seek not only the social support of others, but also information on which treatments  are available, a discussion of medications  and side effects, and the names and telephone numbers of doctors or to suppliers (with prices.) 

            Virtual communities can be dispersed over broad distances, an international borders, never leading to direct social interaction.  These extensive weak networks are related to the strength of virtual disability where computer mediated communication bridges physical barriers to accessibility.  These networks bridge social classes, urban locations, an international borders such as Canada, Israel and the United States. In this chapter, I will discuss a widely-dispersed transnational virtual support community for multiple sclerosis, in which I am both a participant and an observer. Drawing on this ethnographic immersion, this discussion considers the operation of a virtual support group by  analyzing the content of public and private e-mail messages. Also considered, is how  participants construct an MS “agenda” in coping with the effects of  this disability.

            The effectiveness of virtual support for multiple sclerosis  is illustrated through several brief case studies. The conclusion suggests some of the similarities, and differences  between this MS “community” and other disability support “communities.” Of primary importance is the rollout computer mediated communication among persons whose primary  contacts are with their immediate families, small groups of friends, and with scattered MS clinics or a few  medical professionals, will acquire detailed reputations through discussions within the virtual community.  For example, information on neurologists in Vancouver, Toronto, Los Angeles, New York and Tel Aviv is discussed frequently by the scattered voices of the MSN-L community, sharing information on the reputations of practitioners, from a consumer perspective.

               This focus is particularly relevant in the context of the virtual disability community as as a type of imagined community (Anderson (1991(1983)) without apparent spatial boundaries, or a linear concept of time relating medical narratives. It is this ethnographic and reflexive approach which characterizes this account of MSN-L, the virtual support group that I will use as a model of virtual disability in this chapter. Before discussing the ethnography of a virtual support group, it is useful to discuss the meaning of a support group and of virtual support.  Of additional interest is the relationship of virtual disability community to medical practice.

Support  Groups: conventional and virtual 

            Face -to-face and virtual support groups share some common characteristics; for example, both incorporate public and private networks of communication. However, they each function within distinctive contexts. In particular, virtual support has increased geometrically as a larger number of people become engaged in computer assisted communication, and more importantly as computer users often do not create sharp boundaries between everyday and virtual or "on the screen" worlds were movement from one to the other may be fluid and imperceptible (Turkle 1998.)

            Significantly, within virtual support groups, informed  persons with disability or their caregivers, are usually the symbolic equals of medical practitioners and health professionals, neither of whom participate regularly in discussions. It is important to emphasize  that participants in a virtual support group are invisible to each  other, in a setting which is distant from the isolation of the ward or the symbolic barriers of the doctor's office (Zola {1983(1972)). Even when physicians are absent, the clinician's discourse of 'medicalization' is constantly-present and part of the tropes of everyday exchanges.  This chapter illustrates  the how participants in virtual support groups  influence and shape narratives of support.

            One of the distinguishing features of all support groups is the reported and 'imagined' similarities which create and reinforce communities. In this way,  "experiential authority," the voices of those who live with disability or support the disabled, "becomes a source of authority that is independent of other aspects, in contrast to the experiential knowledge of professionals which translates into authority and power within their professional roles, not separate from them (Borkman 1990, p.20.)"  Within the support group (face-to-face or virtual,) persons with disability participate in a microcosm where " lived experience occupies center stage" (and is not) "incidental to an occupation (Borkman 1990, 20.)”  In most research with support groups, this insight into the relationship of outsiders to those with experiential knowledge refers primarily to interaction-based support groups where meetings are at regular intervals, often under the supervisory gaze of representatives of charitable or public service organizations, or the scrutiny of invited medical professionals. That medical presence is largely absent, minimally present, or implied, within virtual support groups.

The Virtual Support Group

            E-mail  from a group moderator, or observing in response to other 'posts,'  provides guidelines to both experienced members and inexperienced 'newbies' for on-line  communication : 'posting,' correct modes of reply, rules of permissible or expected on-line conduct or ‘netiquette’, and dealing with the  ‘flaming’ or  personal attacks which characterize some on-line  communication. Other general considerations which arise include creating and maintaining  a data base of  frequently answered questions (or FAQ)  and alternative styles of leadership. 

             The face-to-face support group and its emphasis on experiential authority provides only a general model for virtual support. Moreover, because most participants are active in several virtual communities, often with different foci, the rules of support in a particular virtual community become inadvertently intertwined with the expected rules of behavior of other virtual communities.  Moreover, time and events in a virtual disability support group may not be part of the permanent communications, and messages are not always re- playable in that subsequent reading may have alternative meaning (Sproul and Kiesler, 1990:128).  The agenda of a virtual support group often carries a sense of time-specific urgency as participants question medical authority to seek cures and solutions. In this way,  virtual support encourages fast-paced intra-community communication which does not replay  previous messages, and many narratives are time-bound requests for assistance or political support.

            A message thread becomes a focus for an information exchange where lay participants often assume the voices of medical professionals. As the props of professional health providers become invisible, a well-informed person with disability, often has more free time than health professionals. There intense interest may extend into evening hours, and facilitates comprehensive discussion of medical and paramedical alternatives. Signature lines and departmental affiliations are not a guaranteed seal of authenticity or an assurance of the value of information. In most virtual disability communities, there is an emphasis on the message and valued information often comes from informed, non-medical members of the virtual community. These persons, sometimes trying a disability pension, find time to accumulate a bank of Medline abstracts, data on alternative medicine, diet or exercise, information on assistive devices, vehicle modification and details of government programs for the disabled. It is in their ability to generate this information, often in response to a query or to a message thread, which reinforces the experiential authority of community participants.

Fieldwork in a virtual support community

            This chapter focuses on my use of participant observation to study interaction within MSN-L, a virtual community in which I participated on almost a daily basis, between 1993 and 1996, as both an anthropologist and as a person with MS. In my informally-expected  introductory biography and in other communications, my role as a social anthropologist was made apparent, though this interaction was rarely with the entire community, partially because my presence was both unplanned, unintended and never formally proposed.[3] That presence was both on-line and supplemented by several private visits with “members” in several American Canadian cities and with the group organizer  in Israel. At all times, my role  has consistently been primarily as a participant, and secondly as an observer. Observations are based on everyday list behavior as I have access to all public messages and, although I met with some participants, I never use any interviews or questionnaires.

            Most of the data in this study is publicly- available internet information, though names including the list name are pseudonyms. Private conversations are reported in a manner that carefully protects the identity of  list members.  Fieldwork with MSN-L was primarily completed on the screen of my home computer. In my study, identities  assume a realism which does not resemble the anonymity of a simulation where players are not deeply concerned about the topics of everyday conversation. In those groups -- MOOs and MUDs, participants are players in role playing games who use pseudonyms to disguise age and identity or gender. To my knowledge, most if not all participants who actively host communications in MSN-L, use their real names and often discuss my name, their actual or former place of work, and minutely-describe their families and home environment. Moreover, many participants with MS, logon with their spouse or significant other, contributing narrative (often it is difficult to tell which  person is “speaking.”)  It is the first fieldwork that I have done where the person undertaking the study is one of those studied and where almost all interaction and observation is in cyberspace. This study, completed over a three-year period, underscores the effectiveness and limitations of  a virtual support group for what is both a disability and a  chronic illness.

             As is often the case in participant observation, the issue of research access is complicated by the absence of an authority structure and by formal criteria for leadership. Yet members, who are almost always self-selected, will respond briskly to messages which they judge to be inappropriate or offensive. In a larger context, their response frames the natural history of a virtual support group where members continually move in, and out of virtual communities.  Moreover, the boundaries of this community may be obscured as most disabilities like MS, are active participants in more than one virtual community and many are active sending posts to several virtual communities.

 

             The MSN-L community has on the average about 225 self-identified participant-members, one-fifth of whom are frequent-posters and ‘influential’ participants in the virtual community. Almost all of these persons use their real names and have distinctive list personalities including "handles" which identified them to others (without discussing their real names,) or signatures which give them a special identity or include identifiers such as distinctive quotations.  However, MSN-L is not an encapsulated village and it’s public communications are mirrored or ‘bounced’ to a separate Usenet  "newsgroup" and to other Internet communities. As Usenet readers are not usually monitored or counted by the host or sending computer, and Word Wide Web search tools bring messages to hundreds of additional readers, the public messages of a small virtual  community may be read by hundreds and possibly thousands of readers.  Of equal importance is that people who are not active in a list and search for certain types of messages, using tools like DejaVu, which allows them to post replies to any public communications.

            Despite this openness of public messages, many readers prefer to be "lurkers" who do not subscribe to a list and choose to read list  messages or 'posts' but never respond.[4] Often, a lurker seeks information for a friend or relative with MS who may never join in list conversation or who may be in a state of denial and rejection of difference (or deviance disavowal (Davis 1961;Murphy 1987:123-4.) However, as this chapter demonstrates, the virtual disability community, through the intervention of one or more of its “members,”  will attempt to control and define it’s public identity.  Also, list participants make occasional use of  private, one-to- one,  communications which extend or even depart from from the list "agenda." The disability list includes both these public and private messages. The volume of the first, forces the observer to select and sample message threads. The secrecy of the second extends to private networks which can only be viewed proactively through participant observation.

MSN-L:  Virtual Support for Multiple Sclerosis

            Data for this study comes from participant observation of screen  messages or 'posts' which arrive at the rate of about 35 per day and vary in length from one line to several thousand words. Moreover, in my own reflexive experience as an active member of the support group, I sent about three messages weekly to the entire list and an average of about a half dozen private messages yearly to the list manager[5], and another 30  to other 'members' who posted public and private replies to  message threads that I was actively following.  Over two years, I did not see a single private post that had been forwarded to the entire community as a public posting, though this would be uncomplicated (entering a “y” instead of a “n” to a query by a computer ‘mailer).’  With this narrow border between public and private, confidential notes such as a private posting on sexuality  (discussed below in more detail,) may be sent mistakenly to the entire list, briefly making a private message into a public one.

            Fieldwork includes several face-to-face and telephone conversations[6] as I contacted the 'list owner,' and several active list members in Americans and Canadian cities, including Toronto. However,  ‘to dispel romantic notions of fieldwork with an international disability list community, on-line' research was consistently more productive than these occasional encounters and public Internet posts were always the more detailed and most candid conversations. Private posts, like interviews, can be exaggerated in metaphors of performance and representation, as the urgency of a MS agenda, much of which is directed toward finding a rapid “cure” (Gold 2001.) Most on-line conversations emphasize "realist tales," (Van Maanen, 1988) at least in public communications.

            As an  anthropologist, my field became the virtual community on the Internet where experiential and narrative posts generated thousands of pages of electronic notes. At times, I compare fieldwork in cyberia (Escobar 1996) with earlier research in Quebec (Gold 1990) or in Louisiana, or elsewhere in that imagined place I knew as French North America (Gold 1990, 2002.) With the exception of several interviews and encounters, interactions within the MS-N is no less insightful, though in on-line conversations, there is is no visual contact though all discussions have a written record. As in fieldwork, I did not know initially what to expect an prolonged participant observation. Also, in cyberspace, there is a continual stream of events, some of which are crises and kept me  'at the microphone' until early morning[7].  To The virtual community is not where I expected to be doing field research, but hours spent "reading the list" became a  field experience.  Using indexing software to follow  topic "threads," I identified major issues of virtual support and also realized that over eight years (1993-2001,) the MSN-L agenda has shifted dramatically and the voices or members of the list were also changing and constantly questioning and redefining its agenda and the unwritten criteria for active membership.  Nevertheless, I was somewhat surprised to find some of the same people in MSN-L in 2001 as in 1993.

            Though much talk is still directed toward finding the “cure” for MS (Gold 2000,) most messages are experiential and deal with daily rituals, symptoms or problems and trips to the clinic. These messages are automatically forwarded  to 'members' in the USA (about 70%),  Canada, England, Germany, Holland, Denmark, Italy, Israel, South Africa, and Australia.  The topic of a thread is listed in the message header (e.g. 'getting worse,' 'house'.' or  'Betaseron,' 'Copaxone' and 'Avonex,' costly auto-immune drugs which delay the exacerbations of relapsing- remitting MS; Methotrexate, a cancer and arthritis drug found to be effective at inhibiting upper body loss of function in chronic- progressive MS;  Amantadine (a Parkinson's  drug which prevents fatigue, a serious problem in MS); the medicinal uses of Marijuana; and the powers of grape seed extract and of primrose oil.  A 'member' who does not wish to read all messages can scan headers, select and read or reply to specific threads. Reading all posts and replying to several, can require several hours, which limits the number of virtual communities that can be effectively-'cruised' and by one person. Over two years, at least 50 members sent posts weekly, and many of  these are multiple messages. The virtual community may have as many as 300 active members; but posting activity is not constant and depends on the issues that are currently presented in list agenda.

Threads and a MS Agenda    

            In this way, active participation in MSN-L, like other disability lists, is characterized by discontinuity, where the immediacy of replies and the continuous layering of threads, builds a network within which participants interact on a first-name basis as though they are in primary contact with each other on a daily, if not hourly basis. A major focus of these contacts is the  message thread and, indirectly, the making of  a MS agenda. In this way, persons with disability, and in particular, with M.S., receive a steady stream of information about new drugs, pioneering physicians or means of dealing with symptoms (often controversial,) and personal thread, where the crisis of one person becomes emblematic of the lives of others.

            The agenda is continuously modified so that it gradually shifts, in both content and focus (e.g. a thread focused on Betaseron 'injection tales' quickly shifted to a discussion of ‘insurance providers’).  The number of  topics is limited by the number of members  and a thread can be difficult to sustain. Even with that degree of consensus, membership in the unmoderated list is open to anyone who contacts the host computer and posts compatible messages.  Public messages are accessible to all members or to anyone who monitors public posts through the Usenet and World-Wide Web. Surprisingly, there are few hostile messages (flames) although the list manager may occasionally reject objectionable list mail if it is public[8]. However,  private mail can be sent without interception,  (using the computer address on their message header), whether or not the sender is a 'member' of  MSN-L.

            Despite this openness, the agenda of MSN-L, illustrates the contradictions and complexity of virtual support.  The changing character of community posts demonstrates how MSN-L develops common narratives and a changing MS agenda creates a shifting boundary for the virtual community. A few persons write with pride or gratitude about 'their' disability community, but the notion of a more general disability consciousness is unexplored.  In both of my observer’s roles, I often wondered which of these list members who are still ambulatory^[9] and deny or overtly fear the disabled body, becoming Striker's savage and unusual  'other' (Striker 1982, 15).

            But the overriding themes of MSN-L's  global electronic support for multiple sclerosis are directive and reassuring  messages: overcoming daily problems, choosing a 'neuro' (neurologist) and dealing with perceived threat to their virtual community. Though one doctor  posted extensive advice on bladder problems and other topics, most members deal with medical issues by relying on the reported experiences of others and these commentators are rarely medical professionals.  Moreover, though most support messages refer to other messages and are both event-driven and dated, it is the message thread which maintains  continuity and  an illusion of timelessness. 

            Within the virtual community or support group, most members monitor their mail daily and respond to individual messages both publicly and privately. However, the sheer volume of mail leads to a mix of long informational posts with shorter conversational notes and requests for help or advice. Reading the message summary screen (or message header,) before reading a post, a community member can decide from the sender's name, the thread name, and message size, whether it fits their immediate concerns. A reader can also determine the status of the message (Is this a direct reply and does the text include previous correspondence from this thread? )

            Though most electronic support groups are 'un-monitored', they are also subject to continual social control. This reinforces community identity though often a 'misleading' message will encourage  the defections of  active  members who  are offended, annoyed or frustrated with others and  decide to leave the group.  This decision may emerge in private messages but it also usually part of a public declaration of departure, often followed by a string of responses  pleading with the departing person not to desert their community.

Lurking and Validating

            Shortly after joining MSN-L, the system facilitator, an overseas professor, with MS,  asks a new 'member' to 'post' a biographical introduction. In practice, many of these new lease self identified members have already become regular readers, or 'lurkers,' while some long- time members (six months!) feel that they should re- post their biographies for the benefit of "newbies." These self-identification and validating tales are distributed as message posts to all readers of MSN-L, many of whom welcome the new  'member' and add their own issues of concern to a message thread that often develops out of the validating tale. For example, this introduction by a woman who had not yet been diagnosed with MS, brought a flurry of diagnostic suggestions, but without the appearance of a new thread.

      Thank you for your warm welcome.  I am a 45 year old mother

      of  two sons  and have a small farm.  I have not been diagnosed

      with MS,  but I keep  running into the possibility ever

      since I had some numbness on the right  side and would

      intermittently hear the sound  of my heartbeat in my right

      ear.  The neurologist told me I had an inflammation of the

      nerves in my  brain stem - probably caused by a virus - and

      that it would eventually go  away.  What he wrote in my

      records was: "It would appear that she suffered  an episode of

      demylelination and probable plaque formation.  It is the first

     episode that she has had and whether or not she will go on to

develop recurrence."

 

            This new member was welcomed to the list but there were no public reactions to her narrative. I did not notice any subsequent posts from her and assume that she either became a lurker, posted from outside the list, or dropped her affiliation with a group that could not be of assistance. Significantly, many of those who visit the virtual disability community do not receive responses to their initial posts and leave the group shortly after their introduction. This is not a group for everyone with MS: new  members are expected to contribute in a compatible way to existing message threads and  there are many who do not find the  support they were  seeking.

            Others are informed by list members who often given bias about the status of their current medical treatment. Writing  without apparent hesitation, members of the list speak for the  'neuro,' by advising the 'newbie' that he or she may not find what they are looking for from a neurologist but should consider  treatment alternatives. Sometimes, the 'newbie' is directed elsewhere:

 Re:"...information on this type of  treatment ..."   Comment: I'm sorry, I don't understand.  If you are looking  for therapies that create functional improvement, I don't  think there are many that I can think of. Was that what you meant?  Most current MS therapy is directed at   symptom management.  I'm definitely not the person to provide  favorable comments on bee sting therapy.

           BTW (by the way), Welcome to MSN-L!

            Other validating tales emphasize that visiting MSN-L is their first opportunity to talk about MS to people who will 'listen.' This theme later developed into a separate thread on the significance of the list as a support group.

     It has been one week since I joined the MSN-L and I am very

      happy that I found this channel for information and support.

      As (overseas  list owner) suggested to me in his warm welcome to the list,

      I will talk a little about my involvement with MS.

            When I was 18 (ten years ago) I had my first exacerbation.

      It  was fairly strong (not being able to walk, etc.). It lasted

      three days and the doctors didn't find out what was going  on.

      Three years later, suddenly, I got really bad, and then the MS

      diagnosis came. 

            During the first couple of years ... I was very worried,

      afraid that weakness and similar feelings were the beginning

      of another strong  exacerbation. I am Brazilian, and I was

      lucky enough to get access to the best doctors and hospital

      in the country (it was the only place in the country with a

      magnetic resonance machine ...).  

            A recurring theme of all posts is that MSN-L has become their MS community -- a group of similar persons who can respond when others cannot. For example, the following comment is representative of many replies: 

I feel like I found some people to talk to about aspects of MS that I don't feel  like discussing with my  family or friends, and I don't have the  opportunity (and appropriate "environment") to discuss  with doctors. Thank you very much, all of you!  

            Some introductions are from those who have never been in communication with MS'ers.  They often live 'normal' lives in which they are unwilling to acknowledge difference.  Their comments come after a long period of lurking:

 I don't want to intrude on your list - but from  reading your posts I have  already learned that  it is indeed possible to  have periods of time which  are symptom free ...

            Others, about one in six and mostly men, join as caregivers (SO' s) who speak for their spouse. After several months of posts, however, it becomes difficult to distinguish a person with MS from her SO. This merging of support persons with the disabled and chronically-ill, reinforces the creation of a single MS agenda. In the lively pace of  message-swapping, a list-member can lose track of who is who  except for the occasional reminder from a SO that they are a voice for "someone else."

 

Community Roles and List  Identities

            In practice, the virtual should group has an informal moderator, who maintains the overseas host computer and  who frequently to contributes frequent opinions, narrative, and private messages. Other members also assume distinctive list- identities and are referred  to, directly, in comments, or indirectly, if their daily or biweekly post is absent. Some identities are revealed in a name or a signature line such as 'Blue Skies' or a quote in Japanese.

            There are assigned and expected roles in the daily communications of the group some of which will be generally accepted, while others may be challenged. For example, a plea which elicits immediate response, is the perplexed person with MS, or a caregiver, with a  tale of  the newly-diagnosed. Other list members assume medical or pseudo-medical roles. For example, 'Solomon,' draws on his extensive library of  research abstracts and became a 'resident medical expert’ who provides background to virtually any inquiry and casts studied rejection to the proponents of fringe cures or unproved theories  (e.g. climate-based theories of MS.) Nevertheless, was challenged by others who rely on alternative medicine and diet. For over a year, everyday the list would receive several medical explanations from Solomon, often in response to inquiries.  Eventually, however, the Solomon, who had some medical training before contracting M.S., signed a contract with a major commercial Internet provider, running their M.S. forum.  Within a few months, several persons took over his role as medical expert providing longer and more complete medical information which they obtained elsewhere on the Internet.  Also, intimate 1990s, at least three persons with medical experience or credentials began to send detailed information to the list, often collaborating their own theories.  One of these persons posted a great deal of information on the linkages between multiple sclerosis and diet.

 

MS Tales

      Most participants begin with a narrative of eligibility and, once enrolled on the list, even the most vocal and expert of these participants, posts a 'confessional tale' (Van Maanen 1988:73) which establishes their similarity to others in the virtual community. About a third of the posts, during my first year of  fieldwork,  provide an update on the availability and effects of Beta Interferon (the first FDA approved drug for relapsing- remitting M.S.) Others write about methyl-prendisone  (Solumendrol), cladibrine or methotrexate. Many commentaries challenge the effectiveness of all medications  such as Baclofen, taken for spasticity.

            The Beta Interferon posts, accompanied by 'injection tales' and travel routines are experientially-detailed, often with injection diagrams. Initially, these narratives were divisive as at least half of the community were not taking Betaseron, either because it was not released to persons with chronic progressive M.S., or because they did not have insurance coverage and could not afford the drug, or because they had been persuaded that it is ineffective. Some of this evidence was produced by Solomon, working in his  brief self- assigned role as role as MSN-L's "medical expert"  (despite the occasional  presence of several doctors). Reviewing the neurological publications, Solomon concluded, to many unhappy members that the effectiveness of this high-priced wonder drug was scientifically questionable. Some, following Solomon 's advice decided not to register for Betaseron. However, in a few  months, that composition dwindled and  posts began to include new injection tales and advice on preparing the medication, including rough sketches of  bottles. A few resistors, including an influential frequent poster, opted for the somewhat less expensive COP1,[10] developed in Israel (Though some Israelis in the community did not support her decision.) Meanwhile,  Betaseron-users began to send posts about sudden  remissions and dramatic improvement.  These tales created a dramatic and exciting atmosphere or persons with M.S. for their significant others. 

                Another lively thread, which initially lasted for several months although it has returned in recent years, is the effect of Cannabis (Marijuana) in substantially-reducing both pain and spasticity. One poster began buying Marijuana, while another reported regularly on two plants (Mary and Jane), growing by his bedroom window. This led to a concerned post, from Germany, about the legality of discussing cannabis, on the Internet. But, as Mary and Jane matured,  Marijuana-growing gave way to the prospect of MSN-L's summer camp, an imaginary place where things go on as they once did before M.S., and everything is 'accessible.'

                 Significantly,  there is no thread which remains central to be M.S. agenda for more than several weeks.  One exception is the constant questioning about the effects of  medications.  Themes like 'telling the boss,'  and  personal experiences like 'pee-stories,' and tales of retention and toileting disasters,  call for a readable often comical and graphically-vivid discussions. However,  to readers avoid repeated attempts to introduce the topic of sexuality, a subject that is thoroughly covered in printed discussions of MS. later discussion, in this chapter, emphasizes that topics like sexuality  and its various implications may be  considered to be more appropriate to private messages.     

            Topics which enthuse some members, such setting up a FAQ (a bank of 'frequently asked questions') drew complaints from others,  who insist that  although a support group should discuss MS-related issues, it should  avoid giving a permanency  to rapidly-changing topics. Nevertheless, a British member of the list set up a dedicated  MSN-L FAQ which is never referred to  authoritatively in discussions and which has received few updates. The topics chosen for inclusion in the FAQ emphasize the advice of two persons on medical and nutritional issues and side- step the disability and political dimensions of  M.S. , by including some of  Solomon’s essays and the informative advice of Cathy, a doctor of rehabilitation medicine  with their own descriptive and useful Web pages. Moreover, the FAQ does not reflect a large number of the posts on using drug therapies, a continuing thread on employment, insurance, driving, cannabis or  "M.S. camp," and an unusual flame war between an  outspoken, literate and activist (severely disabled) member,  and a  "newbie"   ('Nutrasweet Betty, ” ) over Betty's claim that there is a link between Aspertame and  M.S. .

            Even with these omissions,  the FAQ provides a history  for the  MSN-L virtual community, and  becomes an  attempt to institutionalize a spontaneous exchange of information as a fixed resource on the World Wide Web (Table 1).

Table 1 -Topics Featured in  the MSN-L 'FAQ' (Frequently Asked Questions)

MS Fatigue

Swank diet for MS

Clothing

What's a Kurtzke?

Impairment of Cognitive

Function

If it Quacks Like a Duck

I always Wanted to Play the Violin

What Harm Can it Do?

Exercise and MS

Bladder Problems

 

Backstage talk: Private Posts

      A great deal of the communication within the virtual community takes place backstage(Foster 1995, Goffman 1963) , in private posts which reply to specific concerns or to autobiographical accounts. Even the medical student, the three doctors and the most prolific posters will use backstage messages if they are concerned about  the accuracy or appropriateness of a post or a question,  and wish to avoid front-stage scrutiny.  Often  backstage messages are deeply personal or reflect concerns that frequent-posters would not  post on MSN-L.  Some arrive unexpectedly, as this response to my suggestion that people read Robert Murphy's The Body Silent. Part of the message could have been a public post, but the comments on the list behavior  of myself and others, are meant to be private.

 

Gerry, Just wanted to let you know that I read "The Body Silent." Actually I finished a few weeks ago.  Thanks for the suggestion.

I still don't know whether it's a good idea to be a "super crip" or not.  There are so few role models in general, though probably a good number on the net.  I think Robert Murphy says (and shows by example) that one shouldn't give up the fight and should try to accomplish as much as possible.  Though we get a lot of conflicting messages on that on the net as well.  For instance, take Solomon (the medical student among them) who advocates  getting a lot of rest ...

Cheers!     Dave

Political Mobilization in Cyberspace

            After my first eight months of participation and fieldwork with MSN-L, two crises demanded a response from the more vocal members of the virtual community. In the first crisis,  Solomon,  the resident medical 'expert' threatened to leave MSN-L in reaction to critical comments or 'flames'  about the quality of his  information .  The response was a dramatic mobilization  of MSN-L,  and  a flurry of messages, one of which came from a doctor, assuring  Solomon  of his irreplaceable role (as  resident doctor.) The crisis subsided  when Solomon continued to post his detailed "medicalized" messages which strongly resemble information  publicly available on Medline.  Shortly, Solomon stopped posting  to MSN-L,  after beginning a  M.S. virtual support group  for a commercial Internet provider. In a few weeks, to another community member,  "Aristotle,"   began posting detailed discussions of  M.S. issues, posting a series  of messages on  "Doctors respond to Questions about  M.S."   In a short time,  "Aristotle" and others, all of whom had access to medical discussions on the World Wide Web, became the community’s resident medical experts. Though several physicians were still community members, the role of a medical voice for MSN-L was easily assumed by others, though the words of Solomon . can still be read in the FAQ. This experience has some  important implications about virtual  expertise and support which will be discussed  later, in the conclusion to this chapter.

            A second crisis  began after Rachel,  the literary disability activist with  M.S. , who also is vision-impaired and uses a wheelchair, was  forcibly ejected from her New York apartment,  and hospitalized. In response to an appeal from MSN- L 's unofficial moderator  and a message from a professor at St. John's University, a number of faxes were sent to an  New York City official and a fund was started for Rachel's expenses. But the MSN-L, which had once received Rachel's strident literary posts, could not mobilize more than a few persons to assist the writer in trouble. The virtual support group was less effective at political support than in the rapid circulation of messages. Moreover, in a few months Rachel reappeared in the threads of MSN-L and both  the incident and the abortive mobilization of the support group disappeared into a void of ‘cyberhistory.’

The conflict of public and private

         There are two crises of identity within this virtual support group, which indicate some useful directions for research with virtual disability. The first deals primarily with the dilemma of privacy in communication but also with the need to consider which topics are not discussed within the group narrative and consider reasons for their introduction or  suppression. The first example deals explicitly with sexuality, but it is also related to topics such as gender, dating, authority and discussion of degrees of disability, most of which are also not appropriate to list narrative (Lyon 1995).  The second example is more complex as it contrasts an engaging public narrative which is optimistic and usually positive, with private narrative that can be characterized by metaphors of despair and defeat.

            The most dramatic personal narratives were received by private e-mail and were not shared but only the virtual community. These examples bring out the contrast of public and private communication, and the significance of each in the virtual community. The first is the example of a woman who is a frequent poster of public messages, but accidentally distributes to the entire list a private message describing the effects of MS on her ability to achieve orgasm. Then, in response to her shame and decision to stop posting, she receives multiple appeals for her continuing participation and several posts detailed in the sexual frustrations of others, in a brief public airing of a topic that has been consistently kept offstage.

             In the second example, a former computer-programmer, corresponds with me about the narrowing of her personal world, describing her difficulties in dressing and grooming and the diminishing  rewards of everyday life.  This detailed lament was sent privately while her public persona projected to the entire list, an image of coping and intuitive management. In this case, private despondency never intersected with public response. In both these examples, community participants soon stopped sending regular posts to both persons. Neither person could find continuous virtual support for these isolating, and depersonalizing, difficulties.

Conclusions: the virtual support group

            The  focus of this chapter is the social construction of virtual community  for persons with  disability drying on fieldwork with MSN-L, a case study  of a virtual support group for  persons with multiple sclerosis. I have focused first on forms of  communication provided by the sharing of online narrative  in a virtual disability community and  secondly, on how  this virtual  group  becomes a source of support by providing  a flow of  information on subjects where information is  not freely  available in a language that can be easily interpreted by laymen.  This egalitarianism of the virtual community is antithetical to the specialized and hierarchical environments of medicine, and to the fragmentation of experience which is a consequence of the medicalization of disability. But this absence of status and hierarchy does not  prevent  virtual support from depending  on some of  the experiential authority that  characterizes conventional support groups. It does, nevertheless, manifest itself in different ways as authority and  experience become objects of reciprocity making them widely available to an extended network of weak ties.  (Kollock1997, Gulia and Wellman 1997.)

             This chapter is a reflexive  ethnographic study of MSN-L that focuses on  virtual support, without a sense of place, and on opaque, ill-defined or fuzzy boundaries which  are constantly undergoing  redefinition.  Nonetheless, it is this flexibility which draws a virtual disability community together in a situation where its weakness is one of its strengths. As this example shows, the virtual disability community is made up of networks of weak ties of geographically-dispersed persons.  Some are isolated by their disabilities, although assuming normal physical selves, few would normally have access to each other.  Participants in this virtual support group add collectively to the message threads of an imagined community (Anderson (1991(1983)) and to what I refer to as their M.S. agenda.

             Whereas the voices of experiential authority are significant in both face-to-face virtual support groups, within a virtual disability support group,  medical voices are  replaceable.   MSN-L overcame the loss of it’s medical “expert” and eventually of  it’s two physician-members, who may continue their presence in the role of lurkers. Not only is much of their advice stored in a somewhat irrelevant FAQ, but other medical voices emerges in text easily captured by community members, and there have been no comments or public regrets expressed above the departure of the physicians.

             In  this way, although the virtual disability community has no direct institutional affiliations, it’s wide network of weak ties assures the constant presence of experiential voices either from the narratives of participants.  In their dealings with  medical personnel, through reported narratives, there is an indirect deference to medical authority coupled with an openness to exploring medical and nonmedical alternatives. This loss of medical authority is never explicitly discussed in conversations in which everyday experiences and medical realities overlap in a way in which there is a clear relationship between disability in cyberspace and everyday life.  The M.S. agenda emerges from both the message threads and everyday experiences, both of which become merged for the person with disability.  This integration is a process  which does not necessarily recreate earlier narratives. For the participants I have followed for over seven years, the virtual disability group remains a most significant means of living with disability.

            There are gaps in the common agenda of the disability community as expressed in the cultural and social representation of MSN-L. The virtual group  includes primarily Americans and Europeans and there are few  participants who are not English speakers. Virtual disability, like much of the Internet, may remain Northern or Western rather than cross-cultural. However, as disability studies continues to emerge as a cross-cultural field, it will no doubt look at Internet groups which are a manifestation of the globalization of perspectives on disability. Like conventional support groups there shared knowledge is experiential, focused on the effects and treatment of disability.

                Common experience splinters when communication deals with social security and private insurance plans -- none of which are relevant to persons outside the USA. Whether or not these plans are specifically discussed, they are always relevant to the availability of medical care and to individual perceptions of possible action. This difference is strikingly clear in ongoing  comparison of  MSN-L and MSC, a  similar virtual community in Canada which, despite the virtual permeability of the 54th parallel, includes primarily Canadian participants. The MSC list never discusses insurance issues, but does deal with some  same experiential questions about  living with MS. More interesting, and similar to MSN-L is that the Canadian group actively discusses medical alternatives which it's participants believe are being ignored-- such as the relationship of MS and herpes.  But political action is unlikely because like it’s American/overseas counterpart, the gap between a virtual community of persons with M.S. and  the medical establishment is too complex to bridge.  The next chapter discusses social interaction within MSC which is noticeably different in its lack of attention to insurance coverage, and similar in the exploration of alternatives which are probably not discussed in face-to-face support groups.

 

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