Autonomy First! Accessing Good Supports Without Sacrificing Your Independence

Spectrum Disordered www.facebook.com/asdisordered We’ve all heard or experienced horror stories about accessing services and supports. Often the idea of receiving services for people with intellectual and developmental disabilities (I/DD), including autism, conjures up images of institutions—visions of Willowbrook. Or, ideas of what is “optimal” for us look like segregated lives, or “intentional” communities where the true intent is to lump us together under the guise of “keeping us safe.” Regularly, the idea of seeking supports to live in one’s daily life carries an expectation that the cost will be any and all independence and autonomy in having positive control over that life. These fears are rooted in fact and truth, both of how things were and in some cases, continue to be. But that does not mean they are a universal truth! There are a lot of really great disability support providers out there! Unfortunately, there are also plenty of…

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#AutisticWhileBlack: To Siri With Love’s Shallow, Dangerous Take on Forced Sterilization

Kerima Çevik intersecteddisability.blogspot.com theautismwars.blogspot.com Kerima Çevik, photo courtesy the author [image: Gray haired Afro-Latina woman next to a windowshade, looking to the left.] [Content note: Contains descriptions of involuntary medical procedure, including sterilization, on Black and disabled people.] I am trying to plow my way through Judith Newman’s autism parenting book To Siri with Love: A Mother, Her Autistic Son, and the Kindness of Machines. It is slow, painful reading. How can I explain my serious ethical concerns about yet another bestselling autism book that capitalizes on presenting the experience of disability from a parent’s reduction of a disabled individual’s worth to how he makes his mother and those around them feel? I can tell you that Newman’s passage about looking forward to acquiring a medical power of attorney so she could involuntarily sterilize her autistic son Gus tainted the rest of the book for me. A vasectomy, she says. That…

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Life, Animated: An Autistic Adult’s Review

Maxfield Sparrow unstrangemind.com [image description: a movie poster for Life Animated. The movie title is in red on a blue background. The top half of Owen Suskind’s head is at the bottom of the image and line drawings of figures from Disney animated movies surround him.] Last week I went with friends to the Portland Museum of Art in Portland, Maine, to see the indie documentary, Life, Animated. Life, Animated is based on a book by Ron Suskind, a journalist and father to Owen Suskind, the Autistic young man who is the film’s subject and an absolute delight. Owen’s greatest love in life is Disney movies and these films have sustained him through many dark years of isolation and bullying (years Owen calls “glop”) as well as all the disappointments and tragedies a well-lived life can bring. And Owen’s life is well-lived, indeed. He is a charming man, a natural…

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Life, Animated: The TPGA Film Review

Shannon Des Roches Rosa www.squidalicious.com We don’t have enough good movies about autism. This is a fact. And by “good” I don’t mean “struggles pluckily and inspires non-disabled people to be grateful for their own lives” or “overcomes their disabilities thereby inspiring non-disabled people to try harder in their own lives.” I mean we don’t have enough honest, rich, complicated stories of autistic people living their own lives on their own terms. But now, we have Life, Animated, which opens in theaters throughout the U.S. and Canada over the next two months. It’s not a perfect movie, but it is a movie that centers Owen Suskind, its autistic protagonist, to a degree rarely shown in autism stories. Centers him not only in his own documentary, but amidst his family’s love and support, and during his journey towards independence. Owen Suskind. Photo courtesy The Orchard [image: a smiling white man with…

Labels, Light, and Love

J. Lorraine Martin cheeselesspizza.blogspot.com “Your son has pervasive developmental disorder, not otherwise specified.” That’s a mouthful to say, let alone hear. It was explained as a type of autism. That was 16 years ago. I did not have the Internet at home.  There was no Google for further research. Dustin Hoffman had provided my only experience of autism in the movie, Rainman. Looking back, the declaration–the actual diagnosing words from a stranger, a neurologist, is fuzzy. What did those letters, PDD-NOS, mean? Could a socially constructed diagnosis tell me who my son would become? When I got home from that appointment, teary-eyed and uncertain, I looked at my son with his large brown eyes, head of blondish-brown ringlets, and cherub face. We had already begun to find our rhythm together.  In our first year together, I intuitively discovered that if I laid him on the floor, and placed my head…

Congressional Autism Hearing Recap

The stated goals of yesterday’s Congressional Oversight and Government Reform Full Committee Hearing: “1 in 88 Children:  A Look into the Federal Response to the Rising Rates of Autism” were to “…get a clearer picture on what is being done, what questions still need to be answered and what needs exist for those children, adults and families who live with an Autism Spectrum Disorder.” This hearing was notable for its precedent-setting inclusion of autistic representatives. Committee Chair Darrell Issa noted that as long as he heads the committee, it will stay open to autism concerns and may even try to find funding to address them. Video coverage of the entire hearing is embedded at the end of this post. The hearing witnesses (and each’s official testimony): Alan Guttmacher, M.D. (testimony) Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health Coleen Boyle, Ph.D. (testimony)…

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Talking About Autism, Disability, & Hygiene

Shannon Des Roches Rosa www.squidalicious.com Most parents fret about their kids’ hygiene and how it is affected by factors like circumcision, tooth brushing, or toilet training. Said fretting escalates when the kids in question have a disability, but hygiene doesn’t have to be the skunk cabbage in the parenting bouquet — not if parents do their best to understand why hygiene can be complicated, take cues from self-advocates with insights parents and professionals cannot provide, encourage self-care, recognize that not all hygiene needs will be rooted in disability, and help make self-care part of a routine. Circumcision is a standby topic in parenting circles. Arguments both for and against the snip invoke culture, religion, sensation retention, or wanting Daddy to have a penis twin. But few mention the possibility of conditions like cerebral palsy or the fine motor challenges that often accompany autism, and how those affect uncircumcised penis care.…

Turning Lives Around Through Supported Living

Diane Lightfoot www.unitedresponse.org.uk/what-we-do/how-we-work/supported-living United Response was set up in 1973 to provide a service based on supported living principles to a handful of adults with learning disabilities in a house in West Sussex. At the time, most such adults usually found themselves placed in institutions, isolated from the rest of society, with few rights and fewer opportunities to live a full and active life. Forty years after that first house was set up, United Response now supports over 2,000 individuals in almost 300 locations across [The United Kingdom], but supported living is still at the core of our work. The majority of our support is officially “supported living” where we support people living in their own homes, with their own rights as tenants or owners, but where we support people in homes that are registered as residential care, we run these along the same principles; enabling people to have control…