I don’t trust the media. Disabled people are often denied a voice, while experts, professionals, policy makers, “advocacy” organizations, parents, and the media itself talk about us, and about all that affects our lives, without very little, if any, input from us.
There is never a balance between what is said about us, often with a high dose of stigma and false assumptions, and what we have to say, our own experiences as disabled humans.
Maybe that’s why social media is a very effective way for us to make ourselves more visible, to make our voices louder.
This is what happened this past week, when hateful, media powerhouse organization Autism Speaks launched a social media campaign, mostly on Twitter, to celebrate its 10th anniversary. We, Actually Autistics (look up #ActuallyAutisitc on Twitter), don’t see a reason to celebrate a decade of hate directed at us, so we hijacked the hashtag #AutismSpeaks10 to make ourselves heard. When Autism Speaks tried a different hashtag, have been run from its own party, we hijacked it too (#AutismChampion, #AutismChampions).
An article (1) about our party crash came out, which gave us more quotes of ignorance to debunk (2) (I know, I made a grammar error there). Then a writer for mtv.com contacted the Boycott Autism Speaks Facebook page(3), where I am one of the moderators, asking if we would like to comment for an article she wanted to write about the Autism Speaks social media failure.
I agreed, with the condition that there would be no edits, that the comment would be published in full.
Here is a transcript of the conversation, the parts concerning the no-edits agreement, via Facebook message (I added bold):
Hello, I write for MTV News and we were considering writing a story on #AutismSpeaks10 and #ActuallyAutistic. I was wondering if there was anyone who was willing to comment on it for out piece. Thank you, Robin Lempel
Boycott Autism Speaks response:
Hi Robin I can comment but you can also find a lot of what is being said in our page. There is a storify with some of the tweets, an article I wrote and another blog post with tweets in alliteration form. All that was said is true. If you want one comment, how long do you want it and will it be quoted exactly as I type? Because I will not comment if it is going to be edited. – Amy
Hi Amy, Thank you so much for getting back to me. I’ve looked at the articles on your page, and they’ve all been really helpful. We are looking for someone to comment for our piece as well, though. I would definitely keep your comment exactly as you type it. In terms of length, I’m pretty flexible. It doesn’t have to be too long. I’m just looking for your thoughts on Autism Speaks and the hashtag. I appreciate your time. Thanks! -Robin
The next day I sent my comment, with another reminder of our agreement
Boycott Autism Speaks:
Robin, this is Amy again. Here is my comment about the hashtag. As I said, if it cannot be used in full, I prefer not to comment. I spell Autistic with capital “A” on purpose. My full name is Amy Sequenzia. Thank you.
“Autism Speaks is celebrating 10 years of successful deceit. All the money this powerful and marketing-wise organization raises, all but 3%, is used in pay checks, research that exclude our priorities and improvements for Autistic lives, and access to more power. Autism Speaks also ignores voices like mine, coming from a device, because it refuses to acknowledge that very disabled Autistics with co-occurring conditions can also be proud of our neurology. I am epileptic, I have seizures almost very day, and I have GI problems, and these are not autism, even if Autism Speaks media strategist insists it is. I am not alone; there are many of us, including proud young Autistics. In 10 years, Autism Speaks has never used a kind word when referring to Autistics, unless in a mocking tone, or to point out how we would have been if we had never been born. Autism Speaks also supports electric shocks – at the Judge Rotenberg Center in MA – for Autistics deemed “difficult”. If they want to “celebrate” their 10 years, we want to make sure all the invitees know what they are celebrating. Autism Speaks has not done anything for Actually Autistics (#ActuallyAutistic)”
And her response:
Thank you so much for your comment. It’s really helpful and I’ll definitely put it in as is. Would you like me to send a copy of the piece before we publish it?
She did send me a document with the article, which was actually very good, and will my full comment. The article was published and I noticed the comment had ben edited. I contacted Robin (the writer) again and she said she was trying to get the editor to fix the quote, and gave me her email address.
My exchange with the editor, Caitlin Abber, is transcribed below (bolds are mine):
Dear Ms. Abber:
I was asked by Robin to comment on the article published today about the Twitter hijack of Autism Speaks celebratory hashtag.
I said I would comment, but with the condition that the whole comment be published, no edits.
I also gave her links to articles that would be a good source of information, in case a non-edited quote were not possible. I was not interested in being half-quoted.
Sadly, the article – which is very good – does not have the full quote.
I am asking that this get corrected, either by editing the article, or by adding a footnote to it with the rest of the quote – ASAP.
Thanks for reaching out. Unfortunately we cannot include your entire quote, as Autism Speaks has not yet responded to our media request, and as journalists, we want the post to be balanced. The quote we have in for you now adds a really important personal voice to the story, and gets your point across in a clear and influential way. I think it is great as is, but I understand if it’s not what you expected.
We are happy to take your entire quote out, and Robin can find something else to replace it with — but it will have to stay up as is in the meantime.
Again, my apologies for the misunderstanding.
Let me know if you have any questions.
Sorry, but this is not misunderstanding.
If Autism Speaks does not want to respond, this is not a lack of balance, it is because they never address what we say.
By not posting my entire quote, you are doing what Autism Speaks has always done: silence us.
Again, why what I say should be balanced at the discretion of Autism Speaks when they are the ones refusing to comment?
I’m sorry you feel that way. We will remove your quote now.
I am sorry you believe that no comment from an Autistic voice is so casual that removing the quote is the best solution.
There is a reason why Autistics are burned out by the media. I thought it would be different this time. Please, when you remove the quote, let the readers know that you are doing so because I was not fully quoted. Thank you.
She never got back to me. Instead, she removed the whole article from the site.
So much for journalism integrity!
(You can still read the article as published thanks to someone on twitter who posted a copy) (4).
I am about to deconstruct her argument.
She talked about ethics and balance. So, I have a few questions.
Has she spoken to her fellow media editors about talking to us before publishing one-sided stories about the “woes” of a disabled life?
Has she criticized the NY Times for running Op-Eds that promote a return to institutionalization of people who look a lot like me? Has she asked the editors why Op-Eds written by disabled people are routinely denied publication? I and others have written several times and never heard from them)
Has she spoken against the editors who allow murderers of disabled people, and their apologists, to reduce the lives of the victims to a set of burdensome, tragic tales, while denying the disabled community our thoughts on those heinous acts? Surely, they find one or two prominent disabled people to be quoted, and that’s a step. The ones interviewed say what I would say, that our lives are worth living. Their voices matter. But the “balanced journalists” never ask me, or others like me, how we feel about these murders. I am very disabled, I cannot do much without help, I can be self-injurious. I am a lot like those victims. I could BE one of the victims. But if they ask me, and I say that I prefer to live, that my life has value, they lose the false claim that only speaking, “independent” Autistics (and disabled people) are proud.
The editor also says that the comment could not be posted in full because Autism Speaks hadn’t responded with its own comment.
Where is the logic?
If someone or some organization refuses to comment, does that mean all other comments are censured?
Here is a quote for her, taken from a song:
“You can keep your logic
‘cause it’s not that strong”
If this logic were to be applied to all publications, disabled people would not have to worry about misrepresentation. Since we are never asked to comment on articles about us, the stigmatizing, hateful comments against us would also be censured. The thing is, they never are – media bias, media double standard
Why my comment, a request from the writer of the article, needs the green light from Autism Speaks to be published in full?
Finally, I was clear that I would prefer not to comment if edits were made.
Caitlin Abber seems very concerned about the ethics of her journalism.
Why hasn’t she contacted me to make sure I still wanted to be quoted?
And how bad an editor has to be to give the writers the freedom to agree with things she knows she might not honor?
Caitlin Abber, Issues Editor for MTV.com is not only a bad leader, she is also unethical, and just a little bit childish.
After saying she would take the quote down, after being asked to write an explanation about why she was doing that, she threw a tantrum and took the whole article down.
I don’t trust the media.
Here is the comment again, as I wrote it. The part left out of the article is in bold:
“Autism Speaks is celebrating 10 years of successful deceit. All the money this powerful and marketing-wise organization raises, all but 3%, is used in pay checks, research that exclude our priorities and improvements for Autistic lives, and access to more power. Autism Speaks also ignores voices like mine, coming from a device, because it refuses to acknowledge that very disabled Autistics with co-occurring conditions can also be proud of our neurology. I am epileptic, I have seizures almost very day, and I have GI problems, and these are not autism, even if Autism Speaks media strategist insists it is. I am not alone; there are many of us, including proud young Autistics.
In 10 years, Autism Speaks has never used a kind word when referring to Autistics, unless in a mocking tone, or to point out how we would have been if we had never been born. Autism Speaks also supports electric shocks – at the Judge Rotenberg Center in MA – for Autistics deemed “difficult”. If they want to “celebrate” their 10 years, we want to make sure all the invitees know what they are celebrating. Autism Speaks has not done anything for Actually Autistics (#ActuallyAutistic).”
About the Author, Amy Sequenzia.