Thursday, July 16, 2015

A Moment of Crusading Faux Pas: Watching Autism Speaks Destroy Its Brand

Update July 31, 2016: In May of 2015, Bob Wright announced he was stepping down as chairman of Autism Speaks. After the People Magazine award article came out and  this blog post was written in response to it, Autism Speaks announced that two white, cis, male autistic professionals had been appointed to its board. This was a tremendous victory for disability rights activists who had spent ten years calling out the mega nonprofit on its' token appointments of autistic people and lack of autistic decision-making representation in its organization. Unfortunately, Autism Speaks' core values and primary mission are unchanged.

Suzanne Wright died of pancreatic cancer 1 day ago. While I extend my deepest condolences to the Wright family on Mrs. Wright's passing,  I cannot now present Mrs. Wright as a person who did not inflict great harm in the name of doing good. So I chose to repost this essay. The largest disservice anyone can do the autism community at this point is to present an inaccurate portrait of the Wrights and what their place is in the autism conversation and autism history, even in this time of tragedy. Such an action could be used to inflict further damage on autistics and their families. 

Once you see a thing you can't forget it. Unfortunately, I am being made to witness this again and it saddens me. The professionally crafted photograph of Bob and Suzanne Wright that must have taken an entire photo shoot to achieve, yet again using their grandson as scenery to promote their brand as "crusading heroes" against autism.  In ten years the Wrights have never grasped that using a disabled person as scenery to justify speaking in their place is going to make a great many disabled people and the families who love those people sad at this extreme lack of understanding of what ableism is and how their behavior exemplifies and perpetuates ugly stereotypes about disabled people.  But I need to say here that People Magazine got it right. Bob and Suzanne Wright are crusading against autism, autistic people, and everything that being born with a brain that is divergent from the norm stands for. I am not certain that merits a title of heroes. It does concern me though because that particular two-word combination reminds me of another couple I grew up seeing back in the 70s.

Bob Green and Anita Bryant, credit Huffington Post
Many of you may not remember this other crusading couple. They were also deeply religious and believed their crusade was just and God was on their side.They also thought of themselves as heroes.  Bob Green and Anita  Bryant were crusading against gay rights and pornography. Things came to head at the moment of a Phil Donahue live broadcast when most of the nation realized there was something very disturbing about Anita and Bob Green. Ms. Bryant's naked hate and homophobic bigotry were as shocking to witness as they were impossible to hide. Mr. Green had an affair in the past with17-year-old girl that returned to haunt him and destroy his years of carefully crafted self-branding as a pillar of moral rectitude. The interview, meant to clear things up, was a disaster. It was the turning point that began a sad, embarrassing tumble into obscurity, bankruptcies, near suicide for Bryant and a bitterness in her ex-husband Green that he carried to his grave.
Ms. Bryant hit with a fruit creme pie by LGBT rights activists
during an interview1977 credit Wikimedia Commons

Today, all these years later, gay rights have gained great victories. Strides have been made, although there is a long way to go in understanding that marginalizing people for who they love is wrong. The Greens were on the wrong side of history. Ms. Bryant became the symbol of homophobic bigotry and remains so today. Crusading requires a zealous approach founded in a dangerously rigid thought process that implodes when expectations fail, and reason, understanding, and  humane common sense prevail.

The Crusader attack on Constantinople, from a Venetian manuscript
 of Geoffrey de Villehardouin's history, ca. 1330
credit Wikimedia Commons
Autism Speaks has staggered along for 10 years, crusading very much the way the armies of the Fourth Crusade sent by Pope Innocent III  to save Christendom went forth and sacked Christian Constantinople when the supposed intent was to retake the Holy Land. The devastation to the city is heartbreaking to read even today:

"The magnificent Library of Constantinople was destroyed. Many of the civilians of the city were slaughtered, raped and looted. Despite their oaths and the threat of excommunication, the crusaders ruthlessly and systematically violated the city's churches and monasteries, destroying, defiling, or stealing all they could lay hands on; nothing was spared.[45][46] "

Autism Speaks 'crusades' against those they are supposed to be saving. They crusade without regard for the voices of autistic people because crusades are extremist actions. Crusading obliterates humanity. The Autism Wars blog is also here to allow others to witness these types of misguided assaults that butcher the autism community people like the Wrights profess to want to save and obstinately insist on trying to appropriate leadership of. More harm has come to the autism community from warlike crusading, and extreme reactions to autism than from any outside force working against progress in human rights, accessibility, accommodation, and inclusion.

Now that Mr. and Mrs. Wright have been anointed the heroic crusaders against autism by a magazine, it is time for the everyone to get the message that what our stakeholders need is not the mega nonprofit version of a Fourth Crusade, where Autism Speaks continues to sack, pillage and loot the futures of our community by forcing their organization and its view of autism on everyone else regardless of who it harms. We need to present our own listing of what our community needs are. It is time to end the suffering that 10 years of appropriating the voices of autistic adults and families who don't support the Wrights' crusade against their existence have caused. Take your titles and leave the realm of public policy Autism Speaks. Your crusading is killing us.

Conquest Of Constantinople By The Crusaders In 1204
credit Wikimedia Commons
The board of directors of Autism Speaks might seriously consider having Mr. and Mrs. Wright dial it down and rethink their marketing approach to their nonprofit brand. Using the Wrights as the brand for an autism organization and using their grandson as scenery to justify this has just not gone so well for the organization. The time of presenting autism as the boogeyman is long past and pouring staggering amounts of money on the poor logic of continually presenting autism as a disease coming for everyone's child is really harming everyone. It makes our autistic loved ones targets for bullying and fear based hate crimes. See once Autism Speaks pushes this crusade, and destroys those they are supposedly helping, they can't go back, dust off the survivors, and claim they want to help them with services and supports. We've seen them rescind a job offer to a  mom asking for accommodation for her autistic child, rebrand their old research projects with new and insulting names that clearly label their organizational opinion that autistic people have  missing pieces, and fund things that are frankly scary and do nothing to actually help the huge numbers of autistic people their organization claims are invading the world.

Using one's privilege to get a People magazine given title displays the power of money and privilege, not heroism. See this was never supposed to be about Bob and Suzanne Wright. I believe Autism Speaks was, according to their own spin, founded to help their grandson and people like him. It is about all of them, you know the actually autistic people. Yet Mr. and Mrs. Wright keep crusading and making the one person in their family who is autistic silenced scenery to be gawked at and to display for the correct optics in the name of promoting their personal views of autism. If they wish to express their views its a free country. But when they decide that their view is the only view and repeatedly try to dictate public policy exclusive of every other stakeholder in the autism community their crusading destroys innocent people and usurps the rights of those people like their grandson who must be granted the right to speak for themselves and their peers.

I think Autism Speaks needs to start over, maybe start working to actually move its founders to less polarizing, harmful roles and add some Autistic representation and more true diversity on their board. Real representation rather than decorative people with titles to keep them out of the decision-making loop. Some better marketing people on their team might help as well. While we're dreaming, lets go on to say Autism Speaks should begin funding  research that actually improves the quality of life for autistic people because autistic people have been part of voicing what would improve their lives and therefore all stakeholders would be included in genuine solutions to real issues that impact their own daily lives throughout their lifespans. Obliterating autism because autistic brains diverge from the Wrights' personal definitions of the norm is not a good way to "help" autistic people. Many evil, fragile, men throughout history thought it would help to obliterate other marginalized groups rather than include them. That didn't ever end well, did it?

Oh, yes.

Mr. and Mrs. Wright, it is really okay to stop crusading now. Anita Bryant died at 80 but remains the eternal example of what happens when someone hammers their power and privilege to stand for something that is wrong and refuses to bend. This is not the legacy she wanted to leave behind. It is the legacy her crusading heroism left behind.



  2. Autism Speaks should SHUT UP and let autistics do the speaking. Autism Speaks is a SHAM organisation funded by parents in denial of their neurology.

    1. If only the neurodivergents formed Tea Party/Militia-style groups, A$ would definitely crumble like a super-thin wafer...