Disability Identity: What does it mean to us?May 4, 2008
All of us are quite proud of the fact that we’re made unique, by our individual personalities, and even by the common thread of being on the autism spectrum. If one imagines the spectrum to be the number line, then we take up three points on the graph (obviously it’s not that simple, but the persona writing this needs something concrete to think about. Please forgive the gross oversimplification, it’s just to get the thought out, we don’t think of it like this most of the time. But then most of the time we aren’t writing about how we feel vis a vis disability identity. Thinking about that is one thing, putting words to the thoughts is another thing entirely). This is what makes us unique despite the common thread of autism. One of us, Athena, wants to tell “the whole wide world” (her words) that she’s autistic and very proud of it. That’s a fact, but it’s not always a good idea to tell everyone you meet that you have such and such disability if it’s not readily apparent. The unfortunate reason for that, as countless bloggers have pointed out, is that not everyone is mature enough to appreciate the depth that people with disabilities have, mentally and spiritually; even thoughts who are not religious at all. Spirituality can be what makes people relaxed, being one with nature, or things like that. Athena also wishes she could stim in public and say things that would obviously be looked down upon (but they feel good so why can’t I say them?- again her words). She wishes that her significant other/our best friend could bounce her on his knee in public if that’s what she asked for (whether she would or not, different story, that’s just an example. he can’t bounce her on his knee anywhere, because she’s loads heavier than small kids parents bounce on their knees.) Another personality, Ivan, often has to tell her not to do this or that in public “because people will think you’re the r word” or something like that. He uses different words, but that’s the gist of his message. He tells her things like that not to be mean, but because he realizes that people have awful, wrong prejudices about disabled individuals/multiples. He does not want her to hear pity remarks, or feel vibes of mockery from anyone she encounters. In this way his idea of disability identity is somewhat different: he is in no way ashamed of being autistic, but he tries to be more guarded about whom he informs of his autism. Sometimes, he forgets his own advice, or one of us (myself-The Integral, or Athena) take over at a moment’s notice and forget what he’s told us about self-identifying.) Sometimes we feel pressured to say something in awkward silence, or we feel a pressing need to explain our behaviour because of perceived vibes from people, and our mouth opens…….”and it’s off to the races.” Words come out faster than our mental filters can process them as they exit our mouth as soundwaves into the open air. While this type of “foot in mouth” or “oops I said too much” experience is not unique to disabled persons, it’s often more embarrassing to us (as in the three of us, and possibly many other disabled persons/systems, though I cannot speak for anyone else except the three people in this body) because we’re more likely to get called out on it, or have others notice and make remarks, or even be more aware ourselves that we’ve said something we shouldn’t have.
That aspect of disability identity…the fact that we know we say and do things that we’re embarrassed by, as a direct or indirect result of our being autistic and ADHD, is something that we’d like to forget about at certain times but we realise that if we’re going to say that we’re truly proud to be who we are, we have to accept the unpleasant aspects of disability, and not try to hide them under the rug or gloss over them. I’m not saying people should obsess over spilled milk so to speak, but just remember that balance is the key: for every stupid thing you remember saying or doing, think of x number of good things. Or whatever else it takes to feel proud of yourself again, to embrace every aspect of your being, if you need to do anything at all.
For us, as I’ve said before, embracing ourselves to the fullest means accepting completely our autism/adhd/disability identity.
PS: I’m aware that the quality of the writing went downhill as the post went on, but once again I procrastinated and ran out of time, plus this time I had other things to do (getting ready to move back to Maryland from Florida….that takes time and energy….and we rescued another cat…she’s now in the care of someone more experienced with that stuff than we are)
Collaborative, Athena, Ivan, and The Integral.