paper2

Searching for the Cure. Virtual Disability and Collective Action

Gerald Gold, Department of anthropology, York University
Copyright Gerald Gold 2001

For persons with disability and chronic illness, virtual support groups are meeting "places"[1] where marginalirized or stigmatized persons seeking a sympathetic audience are able to locate anonymity, accessibility and invisibility. The representations of these minorities in cyberspace are constructions of weak networks which are frequently referred to by a outsiders and by insiders as being communities (Gold 1999, Guilia and Wellman 1996.) Web discussions of disability and chronic illness and their associated "communities," often include both persons with disability and caregivers (Avery 1998) who identify with them by becoming active participants or representatives of a stigmatized minority (Gold 1999.) In a larger context of disability and of disability culture (Brown 1996), internet-based disability support groups are consequential forums that change the character of mutual support. Those who are physically unable to create social groups and networks, can do so with facility in the barrier free world of cyberspace.

Using primarily textural narratives, this mixed constituency of persons merges as a disabled other, participants in a cyberspace based support group which uses narrative to communicate frequently and extensively. Their corpus of discursive text, becomes the focal point of cyber-networks, which permit the voices of the stigmatized to become agencies of community formation. This voice of the disabled is not available in environments where mobility is denied or impossible because of the dispersion and isolation of the disabled. In practice, it can be difficult to define the boundaries of these cyber-networks of disability. Observers of virtual communities would note that these are separated by "fuzzy boundaries" within which membership is defined flexibly and contextually (Friedman 1998.)

Turkle(1995:42) characterizes this surface-based "surface" reality as a setting which can be independent of any "social" context. Participants identify strongly with the imagined "surface" postmodern world of a screen-based cyber-community with which they interact as co-citizens and which they visit on a frequent, if not a daily basis. As this chapter and previous writings demonstrate, this disability microcosm in cyberspace is characterized both by a series of acceptable events and by extraordinary events which repetitively challenge the temporary cohesiveness of the virtual community.

With a rule-based fragility, the virtual support group is significantly different from conventional face-to-face support groups which frequently depend on contextually acquired knowledge or what Borkman (1995) refers to as "experiential knowledge." Unlike virtual support groups, conventional support groups are characterized by scheduled meetings in fixed geographic locations where they frequently and intentionally incorporate medical expertise. Institutional affiliation and medical presence are often entirely absent in virtual support groups which depend on the discursive threads of narratives exchanges as a means of circulating medical knowledge.

Disguised within these text-based narratives and multiple references to medical knowledge and pharmaceutical solutions is a biomedical definition of disability(Ingstad and Whyte 1997:9.) In a reversal of procedure, the credentials of the doctor's office, icons or markers in the making of disability (Zola 1973), are assigned to participants of the virtual community. It is generally a process of self-selection where medical expertise becomes associated with a changing cast of participants in the virtual community. Although tales of the clinic are repetitive narratives in cyberspace, most medical encounters remain private and these are unreported and unincorporated in everyday narratives (e.g. Gold 1999.) Moreover, within the virtual support community, event system which acquire medical importance in cyber-narratives which become detached from ongoing events and do not necessarily correspond with formal or "real" criteria of knowledge(Gold 1999.)

In this way, the egalitarianism and narrative discourse of the virtual world is separated from the everyday world by a barrier that is difficult to cross except by individuals acting privately outside of the virtual community. Nevertheless, in many virtual disability communities, private meetings between members of the community occur frequently, and these are, in my experience, almost never related to virtual discourse. In practice, these private meetings often include extensive discussions of cyberspace events. Often, virtual personalities are interrogated in these discussions and both parties cast repeated doubts on the relationship between real world events in virtual behavior. In practice, fieldwork in cyberspace was virtually never authenticated or expanded by face-to-face encounters. These occasional meetings, coming after any more hours of reading screen-based narratives, can be interpreted as a significant methodological obstacle in doing field work in cyberspace, but their failure to form a consistent relationship, is also insight into the discursive worlds of the Internet support groups.

In the virtual support group, there may be no mechanism for the authentication of medical knowledge or for the verification of virtual personalities and of virtual history. Moreover, what some would call authentication, especially in a virtual community like MSN, is the product of a process of self-selection of expertise or of knowledge-givers. Unlike face-to-face support, medical presence in cyberspace is not dependent on the support of accredited or even experiential authorities and does not require approval of others within the virtual community. Moreover, without any means of virtual accreditation, there is no reliable way to receive that approval.

For example, trips to the clinic, reported in great detail by some virtual denizens, become topics of discussion or launching pads for other discussions. This ability of threads to change topic removes the focus of discussion from topics, which could appear to have temporary medical importance. Moreover, the sharing experience among equals repetitively challenges the interpretations of others and the value of conventional medical wisdom. Presented to the virtual community, reality is always modified when it is represented in narrative, and solutions are offered as part of an ongoing social construction of chronic illness and disability. While the topic of the virtual thread of discussion might possibly be maintained, discussion threads can change dramatically and veer away from their original focus (Aycock and Buchignani 1996).

Nevertheless, acceptance of medical knowledge is implicit in most virtual support group communication. Even if there is no physician to provide an active medical voice in message threads, the doctor is always symbolically present. The consequences of this hegemony for persons with disability are apparent in virtual communication which is an extension of social network and a metaphor of everyday constraints.

This is confirmed by Rhinegold's observation of virtual communities focused on parenting. As parents who were temporarily focused on the causes and meaning of leukemia, the Parenting Group provided an unprecedented level of support and willingness to acquire more technical information. This experience is both unconventional and disturbing to Rhinegold who expresses reservations about the availability of cyber-expertise for a topic as complex as leukemia (Rhinegold 1994: 23.) Cyber-communities (what Rhinegold refers to as the "Cyber-mind,") permit the distribution of information as 'expertise' and the making of contacts among persons who would otherwise be isolated or dependent on the 'clinic.'

It is the limitations to collective action, which became apparent in my reflexive experiences with virtual disability. Without "resident medical experts," expertise was specifically avoided, partially because of the problem of accuracy, but also because the expert role undermines egalitarianism and the absence of hierarchical difference within the virtual community. A consequence of the avoidance of assuming expert roles is the failure of collective action is an environment within which accuracy and even authenticity are unsupported or impossible to achieve.

An additional weakness is the inability to sustain a joint project and the inability to sustain or collective social action. Expertise credentials are renegotiated constantly, whether or not medical alternatives are examined with "scientific" (that is medical) criteria. In virtual groups focused on MS, frequently consensus gives credence and support to narrative claims. Medical voice, available elsewhere on the Internet may be as accurate as the "actual" presence of a physician. Moreover, a member of the virtual community, drawing on medical sources, may have the same impact as a physician who places credentials in a signature line.

The initial reflexive fieldwork with MSN-L emphasized how a virtual MS support group develops a shared "agenda" and avoids issues which might be considered divisive or offensive moreover, one surprising finding of that fieldwork is that action sets within a virtual disability are capable of limited and temporary social action (Gold 1999.) However, in this fieldwork, a reversal of what I found in this study of MSN, there is more emphasis on the formation of a bounded) communities, then on the provision of medical expertise,

MSC, a group based almost to entirely in Canada and partially in Tanzania (although, with some exceptions, not in the United States!), maintains a stronger sense of community without any demonstrated collective social action. This strong Canadian focus originally may have been possible because this group began as a project of the multiple sclerosis Society of Canada, although many members, including myself, had no had no information about the initial national identification of "their" virtual community. What attracted me and probably others to these discussions was the specifically Canadian context of cyber-discussions in MSC.

In the winter of 1998, extensive discussions were focused on the effects of snowstorms in Canadian cities. Although this unprecedented storm had severe effects on persons with disability at York University(Gold forthcoming,) discussion in the virtual community was extensive but strongly anecdotal. Other simultaneous threads of discussion focus on national health insurance and the provincial availability of treatment for MS. But the majority of narrative material is anecdotal or specific to a Canadian context. This discursive focus, like Canadian identity itself, is barely visible and is embedded within the subtleties of the narratives.

Another significant difference between MSN and MSC is that the Canadian group has not developed a FAQ (Bank of Frequently Asked Questions) or an emphasis on the development of expertise in MS. Although both groups focus much of their discussion on the newly developed Beta Interferon injections for the treatment of MS. Unlike it's primarily American counterpart, MSC forms a strongly consensual community that supports a web site, developed from the initiative of one "member," where photographs and biographies of member, rather than testimonials of expertise personal experience, ironically promote a virtual community with a common identity. Nevertheless, some participants in the Canadian group also remain distant from any attempt to translate virtual community into social or political action.

After a long period of observation and participation, I would repeatedly ask whether a virtual community could maintain a distinctive boundary and identity in cyberspace --especially along the seeming artificial boundary between Canada and the USA [2.] Moreover, a similar issue is whether any virtual disability community can be an agent of advocacy and influence a medical establishment to consider alternative therapies or even experimentation. Since none of these discursive resources were available to people with disabilities when I first encountered MS clinics in people with MS in 1981, the fuzzy boundaries between disability and expertise could become more significant with the wider use of web resources but persons with disability will have been isolated by the artificial barriers of the clinic.

Earlier research had already shown how an MS virtual community is constructed with multiple weak ties which can mobilize resources for specific projects such as providing a computer and an Internet connection for a community down through the member who entered a nursing home and lost her resources as a computer programmer. That virtual group also came to the aid of a disability activist who was (allegedly) physically expelled from her apartment and hospitalized (Gold 1999).[3] When dealing that fieldwork, I received private E-mail from list members who have lost all access to independent living and accessible transportation. None of that message was ever posted publicly, as MSN did not deal with social dimensions of disability.

Significantly, none of these actions are based on coordinated action of the virtual community or became topics of continuing discussion. Furthermore, few if any of these events can be verified; nor is ever there a demand for their authentication. These and other examples support Breslow (1998) who maintains that the Internet has no physical communities and has no 'space.' I would add that virtual communities also have no memory, although many have a FAQ (database of frequently asked questions) which summarize the operating rules often by providing samples of acceptable narrative. However, although ethnic groups may have more of a written history, that history can be invented or manipulated where groups, such as the Kurds, were created recently from geographically dispersed and historically disconnected populations.

The issue of boundary which also emerged in the study of ethnic groups Barth, 1969) is important and more difficult to define in searching for boundaries in virtual communities. Ambiguity and constant redefinition are characteristic of both ethnic and virtual communities, and ethnicity is increasingly interpreted from a global rather than a bounded territorial perspective. For these reasons, in a metaphorical rather than a literal sense, a comparison of ethnic and virtual communities can be useful. Both ethnic and virtual (support) groups are "imagined communities" (Anderson 1982). MSC, as an imagined community with a Canadian focus and boundary, although this initially seems impossible for a community formed in virtual rather than geographic space. This spatial Identification is of primary interest to this paper, which demonstrates that subtle changes in focus and meaning can create boundary even in cyberspace, where there can be a national context of a transnational phenomenon.

From discussions in person to person MS support groups and then from other conversations with persons whom I met near parking lots and in hospital waiting rooms, I found another undocumented voice of persons with MS. In voices which I would encounter again find in virtual communities, personal narratives questioned the relative value of doctors and clinics, the availability of doctors, critical views of attendant care and of rehabilitation, of alternative medicine, and ways of obtaining subsidies for attendants and modified vehicles. It is this second voice which seemed to be embedded in the Canadian virtual community and it appeared to be absent from my earlier study of MSN. Not only is this narrative separated from an increasingly meaningless reality of the Canadian clinic, but also it is loser to the geographic reality of my own disability. I recognized or perhaps imagined a loose parallel with the dense networks of Islamic communication which shadowed the European colonization of Egypt(Mitchell 1991.)

The Ampligen posts

Before participating in a Canadian virtual community for MS, Mary, who describes herself as a writer living in a large Canadian city, sent frequent messages to other lists in messages about arthritis, lupus, and yeast infections. But her Canadian messages (with some copies sent to other virtual communities) are longer and charged with the excitement of discovering Ampligen. Although this drug was originally released to treat herpes, Mary and some list participants whom she contacted thought that they had discovered something, which had eluded Canadian neurologists[5.]

Mary's Medical discovery and chastisement of the Canadian medical establishment led to a heated response from members MSC, but the "list manager" interpreted her discovery negatively. In a message to all participants, he advises members of the list that these messages from Mary are not 'appropriate list communication.' Moreover, he considered Mary's significant connection between herpes and Ampligen to be unproven and not supported by current research (voice of doctors) [6.] Dramatically, he considers banning Mary from the(ir) list. That response is probably the origin of Mary's adamant reply which interpreters of cyberspace characterize as a flame:

What is this nonsensical banning all about?

I do not appreciate it at all. Stop banning and censoring ...

Mary adds that the list manager had no right to "censor" this extremely valuable information which is exactly the kind of news that is desperately needed by people with MS. With excited defiance, she reemphasized the importance of this overlooked finding. However, other list members reiterate the insistence on caution.

It sounds interesting, Could you tell us where we could find the appropriate background materials? I don't think anyone with MS should try Ampligen until they know exactly what they are taking and why.

Mary then tried to modify the thread from Ampligen to a discussion of histimanines.

I just read a book buy a physician H.D.Jonez who claims (published maybe in the fifties) that he helped tremendously lots of patients with MS in his clinic using histamines intravenously.

I haven't read the whole thing yet but I wanted to put the word out. Has anyone heard of this treatment for ms?

Posting here is more beneficial. I have resolved that as long as I have the power I will let everyone know what I know. I really want an educated answer ...

What really are the chances of us having a long life?

Despite its possibly exaggerated air of desperation, no one followed up Mary's post about histimanines but there was still considerable interest in her thread on Ampligen. One ambitious and interested reply emphasized the significance of discoveries of the Belgian researchers and specifically applauded the efforts by Mary to publicize the relationship between MS and herpes. "No one from the Canadian or American MS Society has taken any action to get this drug tested ... To bad we MSers must fend for ourselves!"

	Some list members contacted the makers of the Ampligen. One of these concerned voices strongly supported Mary by criticizing Canadian and American MS organizations and sought more details about this promising drug. For several days Ampligen became a topic of discussion and the virtual community became an agent of collective action. Mary then sent this passionate message:

So why are we not positively pursuing research on the use of antivirals and antibiotics to treat multiple sclerosis. Why are we moving from the sublime to the ridiculous when we could be doing something positive (leading) to the unutterable, the unthinkable, and officially unacceptable . . . CURE.

An enthusiastic participant contacted the makers of Ampligen and reported that this drug is being manufactured in Ireland for distribution in Belgium and South America. He then initiated contacts with support groups for hepatitis-c "sufferers" -- but they were unaware of Ampligen. Indirectly, he compares the official neglect of that group[7] to the absence of proactive solutions for people with MS. Besides, he retorts:"Hepatitis-c people say it sucks."

Other responses were more encouraging and one member announced the formation of a new virtual community which would reach beyond dialogue -- MS-ACTION.NOW[8.] Nevertheless, despite what looked like the abandonment of MSC has an agency for social action, a dozen more messages on the topic of Ampligen were posted over the next few days. But then, the Ampligen thread stopped and conversation returned to the weather, experiences with MS medication and visits to the clinic.

Misdirected Discourse?

Another narrative incident in MSC is of particular interest because it involves Dave, the same person who had initiated criticism of Mary for her so-called 'discovery' of Ampligen. This second incident began when Dave

Posted a lengthy message justifying his beliefs in atheism.

If I hadn't, in a moment of stupidity, posted my message in the wrong list there would be none of these follow-up messages. However, it's done and it's necessary from me to tell you that, though I don't understand it or need it,

I very clearly know that many need their beliefs, that I'm in a small minority and that will remain so.

Nevertheless, he rapidly sent a message to the MSC community apologizing for sending a message which was designed for another virtual community dealing with philosophical issues.

I would not purposely have done anything to even for a moment disrupt the

comfort you and others take from your beliefs. My objectives, my concerns as an atheist, a humanist, are not appropriate topics for discussion in

MSC ... No one should impose their views on others;

certainly not this humbled scribe.

The striking difference between this "Canadian" list and other disability virtual groups like MSN, is the absence of even a pseudo-medical presence although participants are constantly in touch with hospitals and clinics and a medical presence permeates some messages even when doctors are absent. Canadian participants are likely to suggest alternative medical solutions and are far less likely to discuss doctors and clinics as though they were comparative commodities. But Canada also has a public health system and list discourse takes this availability for granted. Despite the circulation of the FAQ for MSN (American-Israeli) it does not constitute a biomedical resource consulted by many 'members.' The MSN FAQ, located in England, includes a prosaic essay by the 'list manager' in Israel, several postings by a doctor of rehabilitation, supplemented by large amounts of scientifically phrased information, carefully culled from

from medical databases. Significantly, the MSN FAQ includes no

sampling of the discursive content of messages or the sense that a

virtual community maintains its thread as a marker of ongoing history. While some members post tabulations of the frequency of messages -- who posts what and how frequently. Only MSC, with its photo and biography gallery and provides its participants with icons of the imagined community.

Both virtual communities do not monitor their history and my notes on three years of events do not correspond with the interpretations of the posted FAQ or photo gallery. Though the Canadian group has not yet developed an official history, if it does, it is unlikely to include any mention of Ampligen or of its rejection of atheism. Nevertheless, virtual disability communities provide significant support which cannot come from conventional resources.

Notes

1. The concept of the Worldwide or Internet as being spaces or places, is challenged forcefully by Breslow(1999. )

2. The concept of boundary which emerged in the study of ethnic groups (Barth 1969) is equally important to the definition of virtual communities. Ambiguity and redefinition are characteristic of both. However, virtual communities, unlike ethnic groups, do not necessarily share a strong sense of place, although language can be a limiting factor to participation. With rapid telecommunication, ethnicity like virtual community can be interpreted from a global rather than a bounded territorial perspective.

3. These narrative-based tales (Van Maanen 1992) often begin as

everyday situations of participants or "members" of the virtual community.

Contacts are often conflated by an Internet narrative which may wander dramatically from their original context or reappear as an entirely different subject. When a frequent participant, well-known for reports of her community activism and literary narrative, was expelled from her home and injured by what she reported as forcible eviction, the virtual community was mobilized into action by several messages from people who represented themselves as her defenders. They spearheaded a campaign against her eviction by using people within the virtual community to ask for ask for Internet letters, faxes and telephone calls to her hospital. (Gold 1999.)

4. Some of the research for this paper was initiated through indirect contacts with list members, although most narratives were publicly available on the Internet.

5.There already are extensive notes on Ampligen on the U.S. MS society home page, which may have created this enthusiasm, might be based on a document, which discusses a possible link between herpes and ms.

6.In Canada, a hepatitis-C crisis began in the 1990s when thousands of persons were infected with blood that had not been screened. It is significant that a high profile political scandal related to an illness of the immune system, became a political issue a list that is intended to reach persons affected by other chronic illnesses such as ms.

References

Avery, Dona (1998)"Electronic Parenting or, It Takes A (Listserv) Village to Raise Families with Disabilities." http://www.december.com/cmc/mag/1998/jan/avery.html

Barth, Frederik, (1969) Ethnic Groups and Boundaries. Boston: Little and Brown.

Borkman, Thomasina J (1990). Experiential, Professional and

Lay Frames of Reference. In Thomas J. Powell, ed., Working with Self-Help. Silver Springs, MD, NASW Press.

Brown (1996)

Friedman, Matthew (1998) Fuzzy Logic: Dispatches from the Information Revolution. Montreal: Montreal:Vehicule Press.

Gold, Gerald (1999) Virtual Disability: Sameness and Difference in an Electronic Support Group.

Guilia and Wellman

Humphreys, Keith and Julian Rappaport (1994) Researching self-help/mutual aid groups and organizations: Many roads, one journey. Applied and Preventative Psychology 3:217-231, 1994.

Rhinegold, Howard (1994) The Virtual Community: Homesteading on the Electronic Frontier. New York: Harper Perennial.

Rhinegold, Howard (1995)."Which Part is Virtual? Which Part is Community?."

[htttp://www.well.com/uk/user/hlr/tomorrow/vcreal.html.]

Sproull,L.,& Kiesler,S.(1990)." Computers, Networks and Work. In the Computer in the 21st Century." Special issue of

The Scientific American,128,135.

Turkle, Shelly(1995) Life on the Screen: Identity in the Age of the Internet. New York: Touchstone.

VanMaanen, John (1988). Tales of the Field On Writing Ethnography. Chicago: University of Chicago Press.

Zola, Irving (1983 (1972)) Medicine as a means of Social Control. In Sociomedical Inquiries: Reflections, Inquiries and Reconsiderations. Philadelphia: Temple University Press. 247:268

Hosted by www.Geocities.ws