Author: Shaylynn H.
Lately you may have seen a lot of controversy over the Wikipedia page for Misophonia. I may be close to the cause, but the Wikipedia page has been the last thing on my mind. This is strange since awareness is my bread and butter, and is everything that I have been fighting tooth and nail for. When the Wikipedia page and its changes first confronted me – I wasn’t sure why I should care. After-all, Wikipedia is an open-source information website and anybody can change it (within reason). I remember being twelve years old and changing the entry on the sky to describing it as purple. This stayed there for several months. I also edited a comedians page with complete lies – as an inside joke between us, which also stayed for months and months.
At first it was hard for me to see the importance of Wikipedia in our fight for proper research and for awareness.
After some thought I realized that it’s entirely important – and that’s the problem with the way information spreads nowadays. Arbitrary thought and posting has become the new news and people more often than not are not digging a little deeper and discovering the truth about the disorder. For many, the Wikipedia page will suffice as “information” regardless of what it says. If it says Misophonia is caused by childhood trauma, many will view this as fact. Why? These days there is a lot of misinformation about misinformation. It’s the greatest case of irony. With less and less focus being on rich research and more on social media and web-based “fact” it is much easier for things to get skewed.
This post has some amazing insight on what is wrong with Wikipedia and why it should be generally avoided. Of course, I am not delusional and understand that this will never happen, however the author makes some great points. Wikipedia is dangerous when being used as a primary source for information. A community other than academia dictates its rules and it is arbitrary at best.
Of course, we will never see Wikipedia as a reference in a truly academic study – but academics no longer hold all of the information in their grasp. Once upon a time, there was peer-review for nearly every piece of information. If not peer-review there were at least solid editors that could be held accountable. Now? Like, share, rinse and repeat. Some of us are still trying to make sure that real information is being provided. Nothing is a “fact” until it has been scrutinized properly – for a long time, by a lot of people, with a lot of credentials. However, this doesn’t matter in the “wiki” age.
We are ever-present in the fluid world of information flow. We want facts and we want them now. This means that people are going to search out whatever source will provide them with something to read, something to cling to. So, Wikipedia, for better or for worse is here to stay. With that in mind, we need to consider its content. If it’s the first page that a person will click when learning about the disorder for the first time – it is our job, the Misophonia community, to ensure that the information is accurate, research based, and can be backed up by genuine sources. Wikipedia is meant to be a guide to real research. It always has been. If we ever want to be taken seriously, we must be willing to present ourselves with a serious image, tone, and message. This means that even something as “simple” as a Wikipedia page must be done correctly.
My new book, Full of Sound and Fury: A Guide to Misophonia is available directly through the Misophonia Awareness website. It costs $10 (USD). This book has been written to help sufferers cope, explain the disorder to others, and to raise awareness by explaining the disorder to the general public. The book features candid interviews with real sufferers and an emotional perspective on a ‘sensitive’ issue.
misophoniaresearchandawareness.wordpress.com 