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Things Left Unsaid: “I Am Autism” 10 Years Later

September 13, 2019January 31, 2022 by Shannon Des Roches Rosa

[image: Screen capture from the Autism Speaks video I Am Autism, with an African American child sitting on a slide, facing away from the camera. The YouTube video toolbar is visible, above title text reading, “I Am Autism commercial by Autism Speaks”.] Zephyr Ash Ostrowski thefilmroom.org “Where there is charity and wisdom, there is neither fear nor ignorance.” –St. Francis of Assisi “There is nothing more frightful than ignorance in action.” –Johann Wolfgang von Goethe “Where ignorance exists, myths flourish.” Norman Begg and Angus Nicoll It doesn’t take long for a hurtful word or comment to make its way across the globe. The media eagerly reports on officials’ latest xenophobic remarks within minutes. Protesters will gather and complain for a corporation to sever ties with a controversial program or person. But this outrage somehow doesn’t happen with organizations that are directly tied to “helping” certain groups of marginalized people—and when…

A Latvian-American person with short dark hair and glasses. They are smiling and posing near a house on a shoreline, at dusk.

Disability

You Can’t Have Neurodiversity Without People With Intellectual Disabilities

September 13, 2019October 5, 2023 by Ivanova Smith

Some organizations say they want to focus on people with intellectual disabilities, but they ignore the self advocacy movement and autistic people with ID like me. We don’t want institutions! We don’t want segregation, we want freedom and autonomy and support in the community! They just need to see what the ID community has been asking for!

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Disability

What Makes Institutions Bad

September 17, 2017January 31, 2022 by Shannon Des Roches Rosa

Mel Baggs ballastexistenz.wordpress.com Buffalo State Hospital, closed in 1974. Photo © Shannon O’Toole[image: A dilapidated interior hallway of a former state hospital.] Most people don’t have the foggiest clue what’s bad about institutions. What’s bad is something you pretty much never hear about, which is the violence it does to people’s insides at a very deep level. And that can’t be stopped by just removing the things that LOOK bad and throwing a layer of glamour on top. Please, please, please everyone who talks about this in the past tense—STOP. This is still going on. Everywhere. I think too many people get the wrong kind of idea. They will think that this is over. It’s not. They will think that the awfulness and cruelty of an institution is measured by the size, the shape, the physical beauty or lack thereof, the amount of money funneled into it. And those things are…

Disability

Stop Isolating Autistic Adults and Calling It “Community-Based Housing”

August 3, 2016January 31, 2022 by Shannon Des Roches Rosa

Kit Mead kpagination.wordpress.com Photo: Mike Wilson. Creative Commons license. [image: White paper houses with different colored doors & windows.] Introduction Less than a month after I wrote a blog post on the media misrepresentation of Autistic people like me, I’ve gotten wind of yet another case of journalism that misrepresents Autistic people – and in this case, community living too. The article is courtesy of Rolling Stone and the Atlantic reprinted it. I could link to it, but it’s one of the top results if you google “Rolling Stone autism.” Here are the two main premises of the article: High support autistic people can’t live fully in the community. But group homes cost too much. We should fund farm-based settings instead. The Medicaid settings rule in 2014 that declared most farms and compounds for disabled people segregated settings ruined many parents’ hopes and dreams. So… it’s unethical (because it is…

Disability

Successful Community Living for People with Developmental Disabilities

February 25, 2016January 31, 2022 by Shannon Des Roches Rosa

Clarissa Kripke, MD, FAAFP odpc.ucsf.edu In this important talk for anyone concerned about their, or their child’s, long-term living arrangements and supports, Dr. Clarissa Kripke explores progress made in community living for people with developmental disabilities. She explains how California’s Lanterman Act has been enormously successful by establishing an entitlement to community-based services and supports for people with developmental disabilities of all age, and how those services work. She also discusses specific successful cases, and clears up misconceptions about which housing models work best — both financially, and for quality of life. I’m the Mom of an Autistic teen. Of course I want what’s best for him. I want him to have opportunity, stability, care, and respect. After trying to learn everything I could, I realized that wanting what’s best, and knowing how to achieve it, are two different things. Fortunately, we live in California. The Lanterman Act was developed…