Saturday, January 25, 2014

Not Okay: Autism Speaks Owes Kassiane Sibley More Than a Public Apology

by Kim Wombles

The number one search term for Kassiane Sibley and Autism Speaks is a pdf file that was supposed to be removed, was removed in 2012 after the autism community lit up in justified anger that a major non-profit was violating copyright as well as the author's wishes.

Whiting it out while leaving the text in the file so it would still get hits was an offensive move. Restoring the original whitewashing with a new url sometime in 2013 (according to Alyssa) is nothing short of a dick move.

Despite deep reservations about the organization, for a short time I tried to work with it in my city, since at the time they were the only way autism families got to meet each other. I felt the former president, who I had met and talked to, genuinely listened and wanted to improve the organization. I knew the people in my city who worked on the walk were genuine, real, and invested in making autistic individuals feel welcome as they were and in providing support for them and their families.

I was able to live with the cognitive dissonance for two walks. I felt the volunteering done by my family and students to make the walk happen was good work for the local community and I gained many friends in the process. I also saw some things at the paid worker level and in the organization itself that troubled me deeply. It was all about raising the most amount of money with the least amount of help from the larger organization. It was push, push, push.

I also witnessed a failure to recognize the families' concerns and interests.

I walked away from the organization quietly and when I finally did publicly announce I couldn't support it, people who had treated me like a traitor wanted to welcome me back like I'd just suddenly seen the light.

I don't like agendas nor people whose interactions with others arise out of their agenda.

I came online looking for community, for my tribe, for people who would understand my kids and me. And I was very blessed to find numerous kindred spirits, people who have become my closest friends and my strongest supporters. I found controversy and hate along the way, which I have no interest in, and it's amazing when you don't want to incite rioting and vitriol how much more supportive the people in your life are.

I know that there's a true autism community online and in the real world as I experience it every single day of my life. My facebook friends are autistic individuals, parents, the whole gamut, and with a diversity of beliefs, but the one thing we share in common is our desire to be there for each other in the good and bad times and in all the in-between.

We have thousands of people represented on this directory, from those who despise Autism Speaks to those who still support it. And I wouldn't dream of going on any of their pages and deriding them. I'm here to support at the individual and family level.

What you will no longer find on this website, though, is any link to Autism Speaks.

Over the years, their actions have varied from somewhat hopeful to downright evil. Some of their rhetoric approaches, if not reaches, hate speech. They incite fear of autistic people, and they make families think that their lives with their autistic children are doomed.

Raising autistic children, much like raising children, is not easy, but it is an amazing experience, even when it is a difficult, painful experience as our hearts break for our children's struggles.

I love my autistic children and my BAPpy husband and extended family, and I also happen to love my BAPpy self. I didn't meet people like me till I found the autism community. They made me realize I wasn't alone and that there were plenty of people who got me, got my obsessive interests, even appreciated them.

Kassiane wrote a lovely post in November that I recommend highly, that is by far the best response to Suzanne Wright's horrible op-ed.

Autism Speaks, you owe her more than a public apology for profiting off of her work without her permission, for disrespecting her as a published author with the right to say no to having her work appropriated without permission, despite making it clear she wanted her work and her name nowhere near your stuff.

You owe autistic people an apology for making them into caricatures to profit off of.


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