Tag Archives: inclusion

On Facebook and Uncomfortable Ideas

Last night’s moonlight through the window, filtered to make the black photo visible

I’m going to say something unpopular and uncomfortable. Mark Zuckerberg is getting a lot of flack for his comment in the Recode interview about Holocaust deniers. As a librarian, I see that what he’s really talking about is CENSORSHIP.

“I also think that going to someone who is a victim of Sandy Hook and telling them, “Hey, no, you’re a liar” — that is harassment, and we actually will take that down. But overall, let’s take this whole closer to home…

I’m Jewish, and there’s a set of people who deny that the Holocaust happened.

I find that deeply offensive. But at the end of the day, I don’t believe that our platform should take that down because I think there are things that different people get wrong. I don’t think that they’re intentionally getting it wrong, but I think-… It’s hard to impugn intent and to understand the intent.” Mark Zuckerberg, Recode Interview

People are latching onto the small concept and missing the big picture. It was an example, not necessarily a specific. It was an example of something that deeply offends him, but which he is refusing to censor. It was about trying to create a place for unpopular and uncomfortable ideas and conversations, about embracing differences. Ideally, that would be a safe place, an open space, a respectful place, but there’s a lot of people in the world, and I don’t know that very many of them are consistently able to have conversations that are safe, open, and respectful on topics that connect to their fears and wounds.

Think for a minute about ideas that each of us hold which are problematic for others, and what would happen if we applied the same criteria for exclusion to our ideas and voices as we do to the ideas of others that make us feel bad. I have friends who are right wing, and left wing; LGBT, and conservative Christians; scientists, and astrologers; kink aficionados, and asexual survivors of child sexual abuse; highly educated researchers & writers, and people with learning disabilities or from underprivileged and under-resourced backgrounds and communities. My hope is this diversity of people will encourage conversation and awareness across the divides, that we can and will LEARN from people whose thoughts and experiences are different from our own, that we can encourage flexibility and examination and questioning of what is or is not a good trusted information source and why.

So, Facebook isn’t perfect, and people aren’t perfect, and Mark Zuckerberg isn’t perfect, and I’m not perfect. I respect that Zuke is trying. I respect that it is basically impossible to define a conceptual boundary, a line in the sand, for what can and can’t be posted here, without causing harm. There is harm if the line is too loose or too tight. It needs to be a blurry boundary. We need to give people the benefit of a doubt. We need to assume that most people are at heart good people with good intentions, and create opportunities to inform them and ourselves, hopefully creating opportunities to change minds and hearts.

If we tell people they can’t be here, they’ll go somewhere else, and we won’t know who they are, or what they think, or why they think that. We won’t know what they are doing, or what they are planning. We will be creating additional darkness, for unwelcome ideas to fester and turn dangerous.

Zuckerberg had a great response that isn’t getting as much attention as the original remark.

“Our goal with fake news is not to prevent anyone from saying something untrue — but to stop fake news and misinformation spreading across our services. If something is spreading and is rated false by fact checkers, it would lose the vast majority of its distribution in News Feed. And of course if a post crossed line into advocating for violence or hate against a particular group, it would be removed. These issues are very challenging but I believe that often the best way to fight offensive bad speech is with good speech.” Mark Zuckerberg Clarifies, Recode

I don’t know about you, but I’m on Zuckerberg’s side with this.

Advertisements

Blue is for Borgs (On WAAD), Let’s Walk in Red Instead

Borg cyborg prosthetics Walk In Red

It happens every year now. I end up having a gentle, delicate but firm conversation with someone (individual or organizational representative) who really, REALLY want to do something to be supportive and help people with autism, and to do so they have jumped on the bandwagon of the “Light it up Blue” movement founded by Autism Speaks. They mean well, but they don’t realize the broader context.

BLUE = Autism Speaks

World Autism Awareness/Acceptance Day
World Autism Awareness/Acceptance Day

When the context is provided, they either say, “I didn’t know,” or “Don’t we get brownie points for good intentions?” or “Well, it might mean that for you, but not for us,” or “That’s only true in America,” or “It’s too late, we already committed.” The folk who say, “I didn’t know” are usually actually listening, and will make a change in the future. I’m not so sure about the others. I’ve written letters to companies that are “going blue” and collecting funds to donate, trying to make them more deeply aware of the impact. There are companies where I no longer shop, and have told them why. Not that it really has any significant impact, from what I can tell. And I’m afraid that each complaint, like this one, ends up instead feeding the adoption of the campaign, creating free publicity, and feeding negative messages about autism that lie at the heart of what Autism Speaks does.

Here let me explain. Briefly.

SELECTIVE TIMELINE OF AUTISM RIGHTS MOVEMENT

1970 – April chosen as National Autism Awareness Month in the United States by the Autism Society.
1995 – First Autreat, November.
2002 – Autism Awareness Year in the United Kingdom
2002 – Autism Sunday, second Sunday of February, launched in London
2005 – First Autistic Pride Day, June 18th, in Brasil with the theme “Acceptance not cure”
2005 – First Autscape began July 26, near Somerset, UK
2006 – Autism Acceptance Project founded by Estée Klar
2007 – World Autism Day designated by the United Nations
2008 – First World Autism Day, April 2
2010 – First Light It Up Blue (#LIUB) Campaign launched by Autism Speaks
2011 – Autism Acceptance Day created by Paula Durbin Westby
2015 – First Walk in Red campaign (supported by Paula Durbin Westby).

Walk In Red

You see that autism advocacy has a long and strong history, before and after the first efforts by Autism Speaks. What has happened with the Autism Speaks efforts is basically that they have, well, co-opted the idea of the World Autism Day for awareness and fundraising of their own projects. I’m serious. Here, look at some definitions of the word “co-opt.”

Free Dictionary: co-opt
“1. to choose as a member.
2. to assimilate or win over into a larger group.
3. to appropriate as one’s own; preempt.”
“3. To take or assume for one’s own use; appropriate: co-opted the criticism by embracing it.
4. To neutralize or win over (an independent minority, for example) through assimilation into an established group or culture: co-opt rebels by giving them positions of authority.”

Merriam-Webster: co-opt
“: to cause or force (someone or something) to become part of your group, movement, etc.
: to use or take control of (something) for your own purposes”
“2 a : to take into a group (as a faction, movement, or culture) : absorb, assimilate
b : take over, appropriate (a style co–opted by advertisers)”

Autism Speaks have a LOT of money behind them, connected with a lot of famous folk, and have built that into such a strong brand recognition that when you search for Autism Day in Google, you have to actually scroll way down to find the links to the United Nations, the folk who are REALLY behind it. All of the top leading links about it are for Autism Speaks and their fundraising efforts.

Google Search: Autism Day

Whoa. And again, WHOA. And the whole thing with “Blue”? That was to match the Autism Speaks logo. Yes really. So, even if people aren’t aware of it, even if they’ve forgotten, every time someone connects “blue” with “autism” they are creating more support and awareness for the organization Autism Speaks, their fundraising campaigns, their marketing, and their agendas.

Is that such a bad thing? After all, they are a charity, and the money still all goes to support people with autism, right? Wrong.

Not to say that Autism Speaks do nothing worthwhile (some of their Toolkits are genuinely useful), it is the organization’s underlying tenants are viewed with alarm within the larger autism advocacy community, who don’t necessarily have the millions of dollars to get eyes on their ideas. Here is a tiny selection illustrating some of those concerns.

Autistic Self Advocacy Network (ASAN): 2014 Joint Letter to the Sponsors of Autism Speaks

John Elder Robison: I resign my roles at Autism Speaks

ASAN Vancouver Disability Day of Mourning: Introductory Speech

Forbes: Why Autism Speaks Doesn’t Speak For Me

The Daily Beast: “Autism Speaks”- but Should Everyone Listen?

Boycott Autism Speaks

Autism Women’s Network: Is Autism Speaks a Hate Group?

The controversial and contentious dialog seems to center on these issues.

Awareness versus Acceptance

Awareness vs Pride

Assimilation versus Inclusion

Stigma versus Respect

Now, let me go back to the beginning of this post. The Borg. What the community of autism advocates is seeking is to celebrate their skills, talents, uniqueness. The United Nations theme for World Autism Day this year focuses on the value of persons with autism as employees (click on the word “inclusion” above). This has also been celebrated recently by the Wall Street Journal and Entrepreneur. In its long history, the autism advocacy movement quickly shifted from simple “awareness” to more active and joyful celebrations of the value of persons with autism. I’ve been tracking the Autism Speaks controversy for a very long time. I don’t need to explain here how what they do tends instead to undermine those happier and loftier goals.

I do have a personal stake in this. My son has autism. My brother has autism. There are some who think I have autism and was just never diagnosed. I wouldn’t be surprised. Last time I was home, I rescued this beautiful piece of blown glass made by my autistic brother, who was preparing to discard it as not meeting his standards. It wasn’t good enough. I love it, treasure it, and keep it in my office where I see it everyday.

Blown Glass (discard)

Also last time I was home, the pastor of my brother’s church made a point of telling me how important and highly valued he is in their faith community. I don’t want to hear anyone tell either my brother or my son that they aren’t good enough, or that they need to be assimilated. I have many friends who are on the autism spectrum. Some of them are even non-verbal, with what is considered severe autism. I tell you, when my friend who is non-verbal is complaining on Twitter about something her husband said to her, knowing that she couldn’t argue back … well, let’s just say, I don’t think of her as being non-verbal.

What is it that we want of people with autism? Do we want to treasure them and celebrate their uniqueness? Or …

“We are the Borg. Lower your shields and surrender your ships. We will add your biological and technological distinctiveness to our own. Your culture will adapt to service us. Resistance is futile. … You will be assimilated.”

If you still think of “blue” as the color of autism, you may not even be aware how it happened, but you have already been assimilated.

MORE ON THE RHETORIC OF AUTISM

Paul Heilker and Melanie Yergeau. Autism and Rhetoric. College English 2011 73(5):485-497. http://www.jstor.org/stable/23052337?seq=1#page_scan_tab_contents

Autism and Rhetoric (a Prezi synthesizing the high points of the Heiler & Yergeau article).
https://prezi.com/kz2mvlhp-7gz/autism-and-rhetoric/

Alicia A. Broderick. Autism as Rhetoric: Exploring Watershed Rhetorical Moments in Applied Behavior Analysis Discourse. Disability Studies Quarterly 2011 31(3). http://dsq-sds.org/article/view/1674/1597

Paul Heilker. Autism, Rhetoric, and Whiteness. Disability Studies Quarterly 2012 32(4). http://dsq-sds.org/article/view/1756/3181

Emily Malabey. How the Rhetoric of Autism Speaks Has Hurt Autistic People. Council for Autism and Neurodiversity November 15, 2013. http://www.autismcouncil.org/?p=2802

PF Anderson. Beyond “Light it Up Blue” — Maybe “Light it up Gold”! https://etechlib.wordpress.com/2014/04/02/beyond-light-it-up-blue-maybe-light-it-up-gold/
(Check out the Storify of Ibby Grace presenting on this)