are many good reasons to deplore Wikipedia, not the least of which is
its authors’ cultish smuggery
about the righteousness of their cause
and the rightness of their content.
Of course there is also its internecine complexity of processes. The
documentation tracing the petty bitchery about an entry is often longer
than the entry that is produced. The international collectivist
negotiation over matters of “fact” is beginning to remind me of the
United Nations, but without the fancy New York headquarters.
A recent post by e-health blogger John Grohol left me steaming anew about the nature of the entire enterprise.
The piece details a series of exchanges between a Wikipedia editor
and Gilles Frydman, head of the non-profit cancer support community ACOR. The issue was the collective’s refusal to permit links to health-related support groups.
The post includes only one side of the story, and that filtered
through the articulate vitriol of Grohol. So I can’t vouch for the
details of the exchange. But it is accurate that Wikipedia does not
permit links to support groups. [See relevant policy excerpt at end of entry.] On reflection, this astonishes me:
1. Wikipedia is designed to harness the
collective intelligence of many individuals, an example of the the
classic web 2.0 “wisdom of the crowds.”
2. Online support forums are designed to
harness the collective intelligence of many individuals, the classic
web 2.0 “wisdom of the crowds.”
Wikipedia leverages the wisdom of the crowds one way. Online
support forums do so another way. But Wikipedia won’t assign value to
the other–in fact as a matter of policy it pointedly excludes it. Which
is to say: The power of the many is a powerful force to disseminate
knowledge–except when it’s not.
The hypocrisy is remarkable. To cite just one sad example: The
Wikipedia entry on amyotrophic lateral sclerosis (Lou Gehrig/Stephen
Hawking disease) is workmanlike. It includes references to mainstream
groups like the ALS Foundation. It even includes, god help us, a link
to that font of scientific dispassion, the Ride for Life.
But it is utterly silent on the powerful ALS community of PatientsLikeMe,
an unusually ambitious patient (and provider) experience- and
data-sharing site. To say it serves folks who need to know about ALS
far better than Wikipedia–and that it offers a greater amount of
authoritative current knowledge–is to understate.
Yet Wikipedia excludes it because it is an online support group,
not because it is unworthy. Wikipedia has decided–for expedience? for
ideological reasons? for self-interest?–to exclude information not on
the merits of an individual source but due to its information class.
It’s a sort of info-bigotry, an
attempt to exclude a minority deemed less worthy based entirely on
class, not merits. And Wikipedia is itself part of a larger class, web
2.0, which itself suffers similar discrimination!
If we are to exclude one style of responsibly gathering collective wisdom, should we exclude them all? Or–here’s an idea–maybe we should judge individual sources on their merits.
The trouble is, so many people around the world link to Wikipedia,
it rides at the top of nearly every topic search results page. This
only increases its use and ubiquity, if not hegemony. Its decisions to
include and exclude data are magnified across the information universe.
I’m wondering if it’s time for concerned web citizens to stop
linking to Wikipedia. If this were to catch on, it would have the
effect of diminishing its ubiquity, allowing it to recede to its proper
role: a useful but limited, and often deeply flawed, source of
information. Just like an online support group only bigger and with a
chip on its shoulder.
I know, of course, that this is trying to sweep back the sea with a
broom. To draw on that U.N. metaphor, maybe it’s time for a different
kind of collective action: Wikipedia out of the web. The web out of
[Wikipedia linking policy on support groups. Note the sniff of
condescension implicit in the second paragraph. And note how sections
in its medical articles on Awareness and Fundraising Events clearly
violates this policy!:]
Wikipedia’s external links policy and the specific guidelines for medicine-related articles
do not permit the inclusion of external links to non-encyclopedic
material, particularly including: patient support groups, personal
experience/survivor stories, internet chat boards, e-mail discussion
groups, recruiters for clinical trials, healthcare providers,
fundraisers, or similar pages.
Wikipedia is an encyclopedia, not
an advertising opportunity or a support group for patients or their
families. Please do not re-insert links that do not conform to the