Tagged with autistic self advocacy network

giving

giving

On December 31st, my inbox fills with last-minute pleas from every Tom, Dick and Harry looking for money before the end of the year. It’s understandable, given that there are obvious financial benefits to maxing out one’s tax-credit allowance within the calendar year, but, let’s be honest, it’s gotten to the point where requests are … Continue reading

the color blue

the color blue

{image is a hand painted mosaic rainbow lightbulb and the beautiful, multicolored light which it casts. Click on the image to order one from MoodLights on Etsy, with whom I have no affiliation whatsoever} As many of you know, after years of trying desperately to change the way in which Autism Speaks approaches autism advocacy, I … Continue reading

dear abby cadabby

dear abby cadabby

Dear Abby Cadabby, Hi, kiddo. You might remember that we met this past summer. This was you hugging my eleven year-old daughter, Brooke, who is autistic … {image is a photo of Brooke hugging Abby Cadabby at Sesame Place, Summer, 2013} She was sooooo excited to meet you at Sesame Place this summer, along with Elmo … Continue reading

value

value

– A couple of weeks ago, Luau sent me a link to something that he said I needed to see. “Wait though,” he said, “until you’ve got the stomach for it.” Knowing that I would probably never really have the stomach for it, I dove right in. This is what he had me watch. Wage … Continue reading

again

again

Text: If you really want to be an advocate, start by listening to the people you claim to be advocating for. Earlier today, I sent the following email to Liz Feld, President of Autism Speaks. It is short and not particularly well-written, but it is what it is. I didn’t feel the need to repeat … Continue reading

why

~ Three times in the last two weeks, I have been asked some version of the same question. Why do you continue to engage with Autism Speaks when you clearly find so many things about the organization so troubling? Three times, I have answered essentially the same way. Because they are visible. And because they … Continue reading

showing up

    . Saturday morning .. . Later that afternoon … . . And finally … . . I’m not sure how to write about that day – about attending the meeting, about being in, what felt to me, like that sacred space. I was nervous going in. I didn’t know what to expect, which, … Continue reading

a conversation with ari

. ~ The back story Ed note: Ari Ne’eman is Co-Founder and President of ASAN, the Autistic Self-Advocacy Network. He is also a Presidential Appointee to the National Council on Disability. Ed other note: Since my conversation with Ari was not ‘on the record’, so to speak, I’ve limited the following to my side of … Continue reading

nothing about us without us

. Ed note: Yesterday, I sent the following letter to Autism Speaks Co-Founder Suzanne Wright, President Liz Feld and three others. I added the links this morning for your reference.  ~ Dear Suzanne, Liz, et al, I hope this finds you all well. I was thrilled to read yesterday that the House Oversight and Government … Continue reading