A Gentle Activism

I am tending to things I am good at today. Gloriously, creatively, and with great abandon. I do this with tremendous satisfaction, living my life in a sweet, gentle way, working hard to keep things humming. And life, my little world of singing and loving and laughing with Doc is a good one, and worth the care I put into it. I shall, once again, confirm my talents and blessings and feel a sense of place and complete. I am a kitchen champ, a fix-it wiz, and artsy as anything. If I can see it in my highly visual mind, I can usually make it in real life. There’s a running gag for the people dear to me, after receiving yet another bit of handy info or solution from me, to say, “How come you know everything?”, because I am just really, really good at lots of common sense things. I sing, if you can call the party-trick thing I do for a living singing, and experience not the slightest stage fright. I am a seasoned, confident, professional entertainer. I am just as complete and at home on a stage as in my little cottage hideout. I am successful in what my personal definition of success is. Until I am anywhere else but at home or onstage. Then, I am disabled. As an autistic woman, the sensory effort to navigate a trip to the store can put me in bed for a day, and throw me off my game for longer than that. If that trip also involves conversation, I morph into a childish chatter often inappropriately intimate or naive, unless I am rehearsed and scripted. I just cannot manage all I am taking in and so find it impossible to clearly think what I am to say back. My thoughts may be intelligent, perceptive, and complex, but I lack the ability to share them. There is simply no other words for what I am experiencing but a sensory onslaught ranging from extreme discomfort to unbearable pain. When does a limiting inability become a disability? When every plan and strategy in life, every common life experience, every moment, all plans, everything, who I am, and the choices I make, must be in keeping with the way I process the world around me, and limits me. I am not kooky because I want to be. I am kooky because I have to be. I must move certain ways to self-regulate. I can access the world at large only in a limited number of ways without hurting myself. And the outside world gets noisier, buzzier, beep-ier, faster, flashier, and chattier, all the time. If I possess one masterly skill, it is to hide what I am profoundly experiencing.  How do I communicate what I feel is my responsibility to reveal? How do I add my experience to aid in the understanding? As an autistic woman,  communication in the usual fashion (whatever the heck that is) is not only the hardest of things, but the conversation and building of community in itself makes for a chaos of chattering distractions that are my kryptonite, whittling away at my hard-won and valued skills, skills I need to survive on a daily basis. Why open myself to such things, when life is so very sweet without it? Because all autistic voices are needed in order to build a better understanding of what autism is, and improve the quality of life of autistic people. Our experiences are diverse and invisible and limiting unless the misunderstandings and obstacles are removed, skills supported, and access ensured as a right of valued members of society. I am one of the highly fortunate ones, an autistic adult with great systems in place. I am a happy autistic and that is no oxymoron. But it is, unfortunately, a rarity. What could I, and so many other, achieve if the boundaries of misunderstanding, assumptions, and compliance were removed? What if it was okay to request certain accommodations, or to not need to request at all? I dream of a world where I could turn to someone, someway, to learn things, besides just teaching myself. I dream of a world that just plain didn’t hurt so much, needlessly. So I shall continue to do this rather hard thing of adding my voice, my autistic experience, in my little way. Because all voices are needed, including those who cannot manage the team effort and strategies of the larger autism activist culture. Simple stories, life experiences, told authentically,  are activism, too. A gentle activism, in keeping with a gentle, sensitive heart. Parables have been the choice of many wise and holy world changers. Maybe I could add a bit, too.

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