I Just Got Thanked for Being Autistic

…more or less.

Last night, two classmates and I presented a graduate seminar lesson on “Postcolonialism and Disability Studies” (link leads to the web page with the lesson materials).  Since my classmates know that disability studies is among my professional obsessions slash autistic special interests*, they asked a lot of questions about disability studies and its discontents, which I (mostly) fielded.  And, because I’d started the lesson by talking about Autism Speaks’ international “Light it Up Blue” campaign, I did a lot of talking in that class about my own autism.

One of my classmates emailed me afterward to thank me for “being so open.”  This blog post isn’t actually about that email – my classmate appreciated my efforts, and I’m happy they took the time to say so.

This blog post is about the concept of disclosure as a whole.  It’s one I find complicated, especially as a person with multiple invisible disabilities, and I’m not the only one.

The guiding motto of the disability rights movement is “Nothing About Us Without Us.”  It’s a laudable goal and one that ought to apply in any context involving marginalized people.**  But when one’s disabilities are invisible, “nothing about us without us” requires disclosure.  It requires a choice – do I announce that I am among the “us,” or do I retain the protection that passing provides?

I call this “a choice,” but it’s really a constant stream of choices.

One of the things that has always bemused me about Star Trek is that when the shuttle-flying gets tough, the crew has to push more buttons.  It would appear that flying a Starfleet shuttle takes quicker fingers than being a concert pianist.  And deciding, at any given moment, whether or not to disclose one’s disabilities – or even to “let them out” by allowing the constant monitoring of one’s passing to lapse – is a lot like flying a shuttle through an asteroid belt.  It’s a constant series of monitoring, adjustments, mental fingers flying.  A constant series of tiny, annoying little background alarms.  And, sometimes, a constant series of blown relays and broken pipes hissing mystery gases onto the bridge.

When do we disclose?  When do we stay silent?  What are the costs?

Last night, the cost of disclosure for me was very low – the entire class already knew I was autistic – and the benefit was high: I could explain firsthand why disability studies matters and why it’s so much more difficult to apply many of its models to developmental or cognitive disabilities than it is to apply them to physical ones.  I could give them a context for my inability not to sound bitter when I talk about Autism Speaks.  And my classmates are academics in the humanities: they get concepts of identity and ethnography, and they’re comfortable with challenging everything they think they “know.”  And they like me.

Not all spaces are that safe.  But if we don’t disclose in the unsafe spaces from time to time, if we don’t march into them demanding “nothing about us without us!”, the unsafe spaces remain unsafe.

When do we disclose?  When do we stay silent?  What are the costs?

How do we land this damn shuttle in one piece?


*along with Star Trek – see the lesson I gave a few weeks ago on postcolonialism in Star Trek: Voyager and the accompanying paper on the Temporal Prime Directive

**although, as a recent meme in my Facebook feed pointed out, “nothing about us without us” should never mean “we do all the damn work.”


2 thoughts on “I Just Got Thanked for Being Autistic

  1. I am open about my autism – though i do tend to use a bit of humour – I ask if they like Star Trek and then i say, “I am Vulcan and you are Human.”


  2. Glad that someone gave you kuddos for sharing your wisdom and experience.


    I have a sensitivity for words, especially in what I feel are ways to empower ourselves.

    Hence, There are a couple of widely used mottos I’ve chosen to alter slightly for a huge difference in community building:

    Instead of “Nothing about us without us”, I utilize

    “Everything about us with us”. This just feels like an INCLUSIVE, heart building declaration


    “NO justice, NO peace” (as long as we say no …, there will be no…)

    although this sounds the same, there is big difference

    “KNOW justice, KNOW peace”.

    Just wanted to share this…



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