The Self-Advocate/Parent Dialogues, Day Three: Ari Ne’eman

We’re hosting a dialogue series this week, between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network. Why? We want to encourage constructive conversations about disability, and autism. Zoe and Rob disconnected spectacularly last month. If you don’t know the backstory, see Rob’s post, and Zoe’s reaction. Neither is satisfied with the way that scenario played out; they are using this space to attempt a do-over. Zoe went first Robert Rummel-Hudson responded Today’s post, the third in the series, is from Ari Ne’eman. Ari participated in the discussions surrounding Rob’s and Zoe’s original posts, was instrumental in getting these Dialogues to happen, and suggested the format they ultimately took. -The Editors —- Dear Robert, First, let me say that I’m glad we’re having this dialogue,…

The Self-Advocate/Parent Dialogues, Day Two: Robert Rummel-Hudson

We’re hosting a dialogue series this week, between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network. Why? Because it needs to happen. Because being a parent of a disabled child is not the same experience as having a disability, and we need to figure out how we can have productive conversations about that disconnect — especially when it affects our ability to work towards common goals. Building constructive conversations and creating real social change isn’t a garden party — it is hard work. It requires steely listening, forcing ourselves to bench purely defensive reactions, and honestly trying to understand unfamiliar perspectives and direct criticism. It might require walking away from the screen and giving yourself time to process, and that’s fine. You don’t have…

The Self-Advocate/Parent Dialogues, Day One: Zoe

We’re hosting a dialogue series this week, between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network. Why? Because it needs to happen. Because being a parent of a disabled child is not the same experience as having a disability, and we need to figure out how we can have productive conversations about that disconnect — especially when it affects our ability to work towards common goals. Building constructive conversations and creating real social change isn’t a garden party — it is hard work. It requires steely listening, forcing ourselves to bench purely defensive reactions, and honestly trying to understand unfamiliar perspectives and direct criticism. It might require walking away from the screen and giving yourself time to process, and that’s fine. You don’t have…

Fit to Work in the UK, but Where?

Rory Patton springingtiger.wordpress.com Most sick benefit seekers ‘are fit enough to work,” the London Evening Standard recently reported, in a very short summary of the report by The Department for Work and Pensions. The article quotes the Work and Pensions Minister Steve Webb as saying that many people are “able to work with the right help,” and that, “Those who cannot work will always receive our unconditional support but for those who can work it’s right they get the help they need to get into employment.” The implication of the article seems to be that people are claiming benefits dishonestly. The Work and Pensions Select Committee expressed concern at the way claimants are portrayed by the media as “work shy.” The report of the select committee also raises concerns that the new procedures have not been adequately explained to claimants leaving some disabled people concerned that the goal is merely…

The 26th Annual International Technology & Persons with Disabilities Conference

Sandy Plotin Managing Director Center on Disabilities California State University, Northridge The 26th Annual International Technology and Persons with Disabilities Conference (www.csunconference.org) will be held March 14-19, 2011 at the Manchester Grand Hyatt Hotel in San Diego. TPGA editor Shannon spoke with Sandy last week about who the conference is for, who will be speaking, and why anyone who can go, should. Can you summarize the goals of the conference for us? Our conference is in its 26th year, and is dedicated to promoting all the things that people with disabilities can do, all the technologies that are out there. The most important feature we like to get across about our conference is the networking aspect — people find out just as much information from talking to other people in the sessions or walking in the hallways as they do from the speakers. This is the place where, if you…

The Crucial String

Liane Kupferberg Carter http://www.huffingtonpost.com/liane-kupferberg-carter My husband and I had grown increasingly uneasy about our second child Mickey. Though a warm, engaging baby,  he showed no interest in playing Peekaboo, How Big is the Baby, or waving bye-bye.  At monthly visits the pediatrician assured us all was well. But by 18 months, Mickey had only three words, which is why fourteen years ago we finally found ourselves sitting in a cubicle at a major teaching hospital. A team of unsmiling experts spent two hours poking, prodding, and measuring our son, asking him to draw a straight line, stack cubes, put pegs in boards. I perched forward to catch the doctor’s words more fully, hoping to hear how adorable, how promising my child was. Instead, she said: “Don’t expect higher education for your son.” It felt as if we were looking down an endless, dark tunnel. Our radiant little boy had just…

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Autism, Parenting, and the Importance of Attitude

Shannon Des Roches Rosa www.squidalicious.com www.canisitwithyou.org www.blogher.com/blog/shannon-des-roches-rosa Consider the same day, the same circumstances, the same children, the same parent – but filtered through two different attitudes: Leo and I had the worst day ever. Leo and I had the best day ever! Why does Leo always wake up so early? His sisters sleep until we shriek at them to get up, like self-respecting children should. I’m so irritated that he’s sometimes wet in the mornings. He’s never going to be fully self-sufficient. Leo got up at 6:30, but that’s certainly better than yesterday’s 6:00, and then it was his dad’s turn to attend to our early riser. And how amazing that Leo now spontaneously asks to go to the bathroom when he gets up, and is frequently dry. If you’d told me three years ago how well he’d be doing with his self-care at age eight, I wouldn’t have…