11:30am December 5, 2011

Tag ownership

I keep reading, over and over, autistic people offended that nonautistic people are “invading” or “misusing” or whatever, the autism tag.  This makes it sound as if the only people who should tag their posts with “autism” are autistic people.  (Or possibly also nonautistic people who agree with the views of these particular autistic people, nonautistic people who aren’t grossly offensive by their standards, etc.)

This is the only place I have ever been where people have said anything like that.  I took a longer time than most to understand what tags are as opposed to categories.  But everywhere else on the Internet, tags are a simple way to organize blog posts, videos, articles, and other content by what those posts are about. So that there’s a way to click on a tag and come up with any post the author saw as relevant to that content. 

But on tumblr people seem to be using the idea of tags in a completely different way. As if tags are the same as… maybe like what “communities” are on Livejournal – places that are created for the use of specific people and not others.

But that doesn’t make sense to me.  The only time I’m offended by someone tagging a post with autism is the people who make a post of someone they’re trying to call stupid and then tag it with autism or retard or something. Those people piss me off royally.  But a parent or sibling posting about an autistic family member, or autism in general?  A friend, a researcher, another interested party doing the same? They have every right to use a tumblr function designed to categorize their posts and make them easy to find by people with similar interests.  It’s not like they’re tagging their posts #IAmAutistic or #IHaveAutism or something confusing like that(*).

As for whether the posts themselves are offensive or highly disturbing or not that’s an entirely different question.  But not one answered easily.  I am offended and disturbed by things that are often very different than some of the other autistic people here are.  But which things I’d actually object to people putting on this tag is very narrow, including the use of the autism tag as an insult as I described before, and a very small number of other things that mostly have to do with (genuine) harassment, bullying, or defamation.  (There are people here who have used such words in much broader contexts than I would.)

None of this means that I’m overjoyed to read some of the writing here.  There are things that make me just not want to read this tag at all sometimes.  And things that can really screw with my head in bad ways. But most of those things are much tamer than the truly horrific stuff I’ve seen in some other places.  Even so, I don’t see the point of autistic people acting like we are or ought to be sole owners of the right to label our posts “autism”. Because regardless of the way tumblr searching works, a tag is just a label to make things easy to find.  If I write a post about a family member’s autonomic failure it shouldn’t matter that I don’t have it if I want to use that as a tag.  (And no I’m not comparing the two, it was just the first thing I can remember that a family member has been diagnosed with and I haven’t.)

Again, this is almost totally separate from discussion of offensiveness.  Some people absolutely find my viewpoint on autism or disability offensive, and I might find theirs offensive. As long as we stay within certain lines I see no reason we both can’t post with autism or disability as the tag. Tags are labels, not exclusive communities.  I don’t own the autism tag just because I’m autistic – and I don’t want to. 

(*) Those are very close to real examples I’ve seen elsewhere.  Naming a place for nonautistic family members “We Have Autism” does offend me on multiple levels, aside from being confusing as all hell.  But I don’t see that happening here.  The other offensive way those kind of tags are used is when parents write from the perspective of their children where they put very unlikely words in their mouths.   Again haven’t seen that here yet. 

Complete and utter side note, skip if you don’t want to listen to me musing over community names on other sites:

I do find it interesting that on tumblr, it’s autistic people ourselves who see the “autism” tag as “theirs/ours”. 

The reason I say this is because so many other places on the Internet, there will be a community, chat room, or whatever, called autism and one called Asperger.  

The one called autism will be for nonautistic family members only or mostly for nonautistic family members with a few autistic people, and will be actively hostile to certain viewpoints common among online autistic people.  Then the one called Asperger will be mostly or entirely for autistic people – regardless of the fact that lots of us don’t technically have Asperger’s at all.  (We may be diagnosed with autism, PDDNOS, or very very occasionally Rett’s.  And usually mild Rett’s at that given that most people with severe Rett’s have such extreme motor problems that they would have trouble typing, and very few are given access to typing assistance or eye gaze systems because they’re presumed not to be able to use language at all.  And most people with mild Rett’s only find out after genetic testing because if a family member with severe Rett’s – they were usually just diagnosed with another kind of autism or intellectual disability before that.  But that’s an extreme side note to a side note to a side note.)

Anyway, in these other communities it’s often the parents in the community called “autism” regretting or being offended by the presence of autistic people in “their” community and going “Why don’t you all go to the Asperger community?”  It’s interesting to see the situation completely reversed here – except for the fact that tags aren’t communities, but otherwise reversed. 

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