Tag: Sparrow R. Jones

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Disability

When Autistic People Have Epilepsy

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Photo © Ivo Dimitrov | Flickr / Creative Commons [image: Illustration of a human brain, in profile, made of colorful cogs in various sizes and shapes.] Maxfield Sparrow unstrangemind.com [Content note: This post discusses suicidality, mental health, and death.] In the early 1990s, I was engaged to a man with epilepsy. He had tonic-clonic seizures and he was a big guy, so I was always alert to the possibility of an episode. I knew there were stores we couldn’t shop in, and roads I couldn’t drive down. I caught his body and lowered him safely to the ground more times than I can remember. I guarded him from the pressing crowd of curious onlookers when he came around after a public seizure. And I worried, feeling helpless, when his medication levels were off, and he had seizure after seizure. I can’t know what it is like to have epilepsy or…

Disability

Please Stand By is a Quietly Subversive Film

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Maxfield Sparrow unstrangemind.com Me too. Which is why I can’t wait until Hollywood starts getting that stuff right so I *can* just relax and enjoy a film about people like me. #PleaseStandBy — Unstrange Mind 🖖🏼 (@UnstrangeMind) January 28, 2018 [image: Twitter exchange: “I want to see Please Stand By but as one on the spectrum I don’t want to be hung up on the attention to detail and accuracy of the portrayal at the expense of actually enjoying the movie.” -@GlennHampson “Me too. Which is why I can’t wait until Hollywood starts getting that stuff right so I *can* just relax  and enjoy a film about people like me.” – @UnstrangeMind] That Twitter exchange sums up how I feel when I watch fictional movies that feature Autistic characters, like the recent release Please Stand By. I want to just sit back and let the experience carry me away to fantasy…

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Disability

Authoring Our Own Lives: How Autistics and the World Benefit from Auti-Biography

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Maxfield Sparrow unstrangemind.com Photo © barbara w | Flickr/Creative Commons [image: Hands on a typewriter keyboard, at a sunny wooden desk, next to a drink on a crocheted white doily, amidst some plucked green leaves.] The last decade has seen a blossoming of blogs, articles, books, and documentary films about autism, authored by actually Autistic people. This is an exciting time of growth for Autist-created content about autism, and I want to encourage all Autistic people to document their lives: whether in a private journal, or to share with the public. There are great personal and community benefits that come from Autistic people writing about our lives—especially when we write about emotions, victories, and challenges and not just the factual events by themselves, although any autobiographical writing is helpful to the writer as well as to others if they decide to share what they’ve written. Michel Foucault, the postmodern philosopher,…

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Disability

Why To Siri With Love Is a Wrecking Ball of a Book

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Maxfield Sparrow unstrangemind.com [Content note: possible triggers include: forcible sterilization of minorities including Autistic people, forcible gynecological experimentation on minorities, Judge Rotenberg Center, electric shock, stereotypes about Autistics lacking empathy or a sense of humor, stereotypes about Autistics or Black people lacking the ability to feel pain, snakes and feeding live rodents, harmful Supreme Court verdicts, dehumanizing of Autists, getting drunk, preferring drunkenness to talking with Autistic children, humanizing the author of a grossly dehumanizing book.] Come mothers and fathers / Throughout the land  And don’t criticize / What you can’t understand  Your sons and your daughters / Are beyond your command  Your old road is rapidly aging.  Please get out of the new one / If you can’t lend your hand  For the times they are a-changin’.  -Bob Dylan [image: Book cover: A blue background with informal font white text reading, “To Siri With Love,” with a photo of a…

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Disability

Labels Are Valuable Tools

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Maxfield Sparrow unstrangemind.com There’s something that kind-hearted and well-meaning people say that can hurt. And it usually goes like this: “Let’s go around the circle and introduce ourselves.” “Hi, my name is Max. I’m a writer, artist, musician, and public speaker. I live in a van with my cat, Fermat, and I am Autistic.” “Oh, Max, I don’t think you should call yourself autistic. Labels are for soup cans, not people! You’re such a sweet, intelligent man. You don’t need to use that label on yourself any more. We all accept you here. You’re just like us and seem totally normal to us. Don’t label yourself.” [Image description: A bowl of alphabet soup with the word “Autistic” made of alphabet noodles floating in it.] The person who says “Don’t label yourself“ is trying to be progressive and enlightened and kind and accepting. It is so hard to tell them that…

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Disability

Under a Double Rainbow: Autism and LGBTQIA+

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Photo © Ted Eytan | Creative Commons/Flickr [image: Multiracial crowd rallying with flags and signs behind a banner reading “Trans Solidarity against transphobia for justice”.] Maxfield Sparrow unstrangemind.com Ten years ago, I wanted to write a paper about autism and gender issues for a gender and sexuality conference at which I had previously presented. I started the research, then dropped into a depression after realizing how little material was available, and that the existing research about autism and gender was both dismal, and erasing. The medical journals talked about transgender autistic children as if their gender issues were delusions, mere symptoms of their autism. I never wrote that paper. Today, not only is there good autism information available, but the “double rainbow” of being both autistic and LGBTQIA+* is just beginning to be more accepted and understood. We have a long way to go, but people are beginning to understand…

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Disability

Hard Truths: Disability and Poverty Go Hand in Hand

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Maxfield Sparrow unstrangemind.com Photo © *Hajee | Flickr/Creative Commons [image: Person with black hair and a blue coat. They are holding a hand-lettered cardboard sign over their face. Sign reads, “VERY HUNGRY PLEASE HELP!”] I am not the only Disabled person economically struggling, as disability and poverty go hand in hand. Why is that? The answer is complex, since disability leads to poverty and poverty leads to disability. It’s a vicious cycle and sometimes a downward spiral, leading people to lead lives perpetually circling the drain, always on the edge of annihilation. Let me see if I can untangle some of it for you. “You’re dooming yourself to a hand-to-mouth existence.” That’s what my parents told me when I dropped out of high school. And they were right. Well, they were half-right, anyway. I have spent the last three decades living hand to mouth, but it is not a fate…