I recently had a discussion with the Autism Speaks twitter account, which was an interesting experience. It is very easy, I think, to generalize when talking to an organization's account. I was constantly editing myself from saying "you" to "your org" (org stands for organization), and remind myself that while the person on the other side is speaking on the behalf of the Autism Speaks, that person is not the whole of Autism Speaks.
That aside, the conversation was started when I found Autism Speaks following me on Twitter, and a friend and I were discussing why, even though I strongly dislike the organization, I wasn't outright blocking it. This is because although I oppose a lot of what Autism Speaks says and does, I still maintain that it's possible for the organization to change and become something that I might actually support, and part of that is keeping lines of communication open.
What sparked a rather heated discussion was when the Autism Speaks twitter asked me
why I disliked them so much. Some of the reasons included the censorship of an autistic teen's parody website; the many "awareness" videos that have demonized and offended not only Autistics around the world,
but over 60 disability organizations; the fact that according to their own
IRS 990 forms for 2009, only approximately one cent from every dollar raised when to providing assistance to Autistic families and most of the money goes to CEO salaries, first class expenses, advertising, and research for things that many of us disagree with, such as a "cure" to Autism; and the resounding fact that despite it's slogan of Autism speaking and listening, Autism Speaks ignores a lot of what Autistics say and have made some public relations attempts to appease us, without addressing the fact that there is not one Autistic individual on the Board of Directors or in any major influential position that indicates that Autism Speaks is actually speaking for Autism.
It is the opinion of myself and many others in the Autism and cross-disability community that until these issues are met and dealt with, that Autism Speaks has no right to claim to be the voice of Autism, and that it is a corrupt organization posing as a non-profit.
I went into the conversation thinking that maybe I could at least talk to one person in Autism Speaks about the issues I had with it, and found myself becoming increasingly angry. Despite the links to their own website, the person on the Autism Speaks account denied everything, and said that my facts were wrong. That because the Better Business Beau gave them a high rating, that my facts on where the money goes, and how Autism Speaks treats Autistic individuals, is wrong. They refused to make discuss anything else regarding my disagreements with them, ignoring my questions on how Autism Speaks is changing for the better and just repeatedly stating that I was wrong, wrong, wrong.
Which, if you imagine, doesn't endear them to me any more, and if anything, has only re-enforced to me the issues that I have with them.
What I wonder is this, is it really bad PR for Autism Speaks to admit that they've done wrong? To say "Yes, we did this this and this badly; this is what we plan to change about ourselves"? I understand not wanting to admit that they made a mistake; no one really does. But I think that Autism Speaks will gain far more by being more open about these issues.
By admitting their mistakes, they show humility, compassion, and respect towards the Autistic individuals who they've wronged. It sparks not only healing and commitment to change towards those individuals, but within the organization itself, and prompts it to be responsible.
By committing and then doing those changes, Autism Speaks will actually win over all the Autistic and supporting activists, bringing together the community for the better.
So really, I wonder, how can they afford not to do this? Or are they that paralyzed by fear? Or are they really as corrupt as we think they are?
