In June, I wrote about _ how unreliable Wikipedia is _ for health information, including information on about migraine. Now, another situation has developed that leads me to wonder if all wiki sites may be not only unreliable, but perhaps even harmful.
Last week, a Facebook friend brought my attention to an article on wikiHow entitled, “How to Fake a Migraine Successfully.” When I followed the link, a multitude of thoughts began running through my head, including:
- Oh, crap! We already get accused of this too often. This is only going to make people accuse us of it more frequently.
- This is all we need. NOT.
- The stigma we face is already out of control, and this will only make it worse.
- Quite a few thoughts that I can’t repeat here. And, finally,
- OK. What can we do about this?
With that last thought still in mind, I went to wikiHow to investigate. After reading their terms of service and writer’s guide, I went on to read their page on acceptable reasons for deletion. With what I’d read about their mission and goals, three seemed to fit:
- “Below Character Article Standards”
- “Joke topics,” defined as "When the topic itself is a joke. Don’t use on achievable topics that happen to be funny.
- “Mean-spirited,” defined as Instructions promoting destructive or mean-spirited behavior or activities."
With those in mind, I edited the article, inserting their code for the three reasons for deletion and commenting on migraine being a disease and the potential harm of their article. I also left a polite comment on the discussion page. Then, it seemed appropriate congratulate myself for maintaining control, voicing my objections in an appropriate manner, and not losing my temper.
Unfortunately, the situation deteriorated from there, not only in the article edits and the discussion page for the article, but also in a thread about the post in the wikiHow forum. Some of the wikiHow community members were receptive to my comments and those of other migraineurs. Others, however, were not. One even went so far as to start name-calling, calling us, “cry babies.” More could be said about the discussion, but it’s not really necessary to do so to make my points.
The fate of the article is now in the hands of wikiHow administrators. Here’s what their deletion policy says:
“After a waiting period an Admin will review the article and make a decision to delete or keep the article based on a combination of comments and votes. The decision is not made strictly democratically and the deleting admin is encouraged to use his/her best judgment to make the final call. Generally if there is a rough consensus among regular registered users for deletion (as measured by a vote of 60% or more for deletion if the discussion does not reach a true consensus), the page will be deleted. However the admin may decide to not delete the page if an anonymous or registered user makes a compelling case for why the page should be included in wikiHow.”
As you can see, there’s no guarantee that the article will be deleted. We’ll have to wait to see the outcome.
Maybe I shouldn’t be shocked by the lack of ethics and lack of responsibility, the lack of simple human decency, but I am. In fact, I’m greatly saddened by it. Research has shown that stigma increases the burden of living with migraine. We’ve seen a terrifying number of suicides in the online migraine community over the last year or so, including 14-year-old boy who took his life. When talking with friends and family members of migraineurs who have taken their lives, the two most commonly mentioned factors were loss of hope and stigma.
I’ve always been and will continue to be a supporter of individual rights, including freedom of speech as guaranteed under the First Amendment. I exercise that right frequently myself. Still, there must be limits to everything, including the rights of individuals. In a civilized society, one person’s rights must be curtailed when their speech or other activities harm others.
Companies and individuals who own and operate web sites have responsibilities beyond the legal ones. They also have moral and ethical responsibilities to do what’s “right.” In this situation, the article should have been deleted immediately upon someone bringing to their attention the potential harm in this article. Not days or weeks from now when an administrator reviews it, immediately. In addition to commenting on the article discussion page and the forum discussion, other migraineurs and I have emailed wikiHow staff, and one person emailed the wikiHow founder Jack Herrick, whose email address is firstname.lastname@example.org. Some emails have received responses, some have not. The responses that were received said nothing more than they were sorry we were offended. They offered no recourse and resulted in no action being taken. Mr. Herrick can also be found on Twitter.
The article as it has been edited (until the decision to delete or not) doesn’t show any of the content of the original article. The Wayback Machine did have a version of it archived. It doesn’t have the images that were in the article, but it does have the text. If you want to see what it said, check out this PDF file.
We can sit back and do nothing, idly watch the situation, or we can stand up for ourselves, other migraineurs, and people with other stigmatized diseases. If we want to reduce the stigma we face, we must each take action. If we don’t stand up for ourselves, why would anyone else want to?
There are quite a few actions each of us can take, and none of them take much effort. That’s important because some migraineurs are so debilitated by their migraines that they’re simply unable to expend much effort. Consider taking some of all of these actions:
- Post a comment on the article discussion page (link above). Remember that anger won’t get us anywhere. Breathe deeply, and write a thoughtful, polite comment. Give everyone there the respect that we want for ourselves, please.
- Post a comment to their forum discussion (link above). Remember what I said in #1, please.
- Tweet and reTweet. If you don’t want to write your own Tweet, there are already lots of them that you can reTweet. You can find them under the hashtag #migraine, or you can find many of them on my Twitter feed. When you Tweet, be sure to use the hashtag #migraine and tag @wikihow and @JackH (wikiHow founder Jack Herrick). If you tag me (@trobert), I’ll be sure to reTweet.
- Sign and share the petition on Change.org. Ashley Strong started a petition on Change.org. It takes only seconds to sign it, and you can share it on Twitter and Facebook and email it to your friends from the petition page.
- Email wikiHow founder Jack Herrick. His email address is email@example.com.
- Post a comment below. Share your ideas for actions we can take.
Thank you for reading this blog post. I truly and deeply hope you’ll join me in standing up to be counted and taking action on this important issue.
Make a difference… _Donate to the 36 Million Migraine Campaign! _
Teri Robert is a leading patient educator and advocate and the author of Living Well with Migraine Disease and Headaches. A co-founder of the Alliance for Headache Disorders Advocacy and the American Headache and Migraine Association, she received the National Headache Foundation’s Patient Partners Award and a Distinguished Service Award from the American Headache Society. Teri can be found on her website, and blog, Facebook, Twitter, StumbleUpon, Pinterest, LinkedIn, and Google+.