For Autistic Pride Day, I want to look at where we've been. I want us to move forward together.
*This is formatted to be linked to on Tumblr, hence talking about Autistic Tumblr.*
Read this. It's where Autistic Tumblr has been.
Autistic Tumblr has been around for quite some time, starting small, growing ever larger. Of course, Autistic Tumblr is not the extent of activism in general, but I'm posting this on Tumblr, so I recommend reading it. @iamthethunder was actually there, so read that. I can't write to the history of Autistic Tumblr very well because I only popped up in 2013.
I also know that Tumblr isn't the beginning or end of activism, so. There are so many things we have participated in off Tumblr with people who are not on Tumblr. The history of autistic self advocacy as we know it tends to go back to 1993.
Autism is a particularly interesting part of neurodiversity. I don't say this just because I'm autistic. Neurodiversity was born out of the autistic community's desires to separate itself from a parent-based movement in the 1990s. I would argue that's a movement for a modern age, one that needs to be embraced.
“This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism. Therefore, when parents say, “I wish my child did not have autism, what they're really saying is, “I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.”
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure.”1 Jim Sinclair penned these words in 1993, and presented them at an autism conference as part of a larger piece entitled “Don't Mourn For Us.” It is largely considered the foundation piece of neurodiversity and the autistic self advocacy movement. Sinclair described the experience of being displayed at autism conferences “a self-narrating zoo exhibit,” where parents of autistic people would pepper them with questions about autism and not expect self advocacy. When Sinclair wrote Don't Mourn for Us, this surprised parents and created anger. Sinclair and others infiltrated listservs, conferences, and met other autistic people, and started talking for themselves. There was great controversy about this – they got kicked out of spaces quite frequently for being self advocates and activists.
Sinclair also created Autism Network International, a group comprised of listservs, forums and a print newsletter, with resources for autistic people, and also for parents of autistic people. ANI also hosted Autreat for many years, a space for autistic people to meet in person and have workshops.
ANI marked a fundamental split between parent groups at this point. Previously, advocacy work for autistics had been done under a cure culture mindset and by parents.
If one considers the larger disability rights framework, autistic self-advocacy developed particularly late, three years after the ADA was passed, in 1993. A group for autistics run by autistics that worked for change in public policy did not develop until 2006.
An example of when autistic advocates took a fight against cure culture occurred in 2007; Joseph Kras analyzed the response to the NYU Child Study Center’s attempt to raise negative awareness about autism and other psychological, psychiatric and neurological conditions. He writes that the “campaign consisted of several ransom notes posted on large billboards, ion kiosks, and at construction sites in New York City and published in Newsweek and New York Magazine.”2 The messages existed as dire warnings of what autism and the other conditions would do to people’s children. The Ransom Notes campaign response came swiftly, Kras notes, not in the form of lawyers arguing over whether it existed as a publicity stunt, but by a “grass-roots internet protest led by self advocates.”3
The president of the Autistic Self Advocacy Network (ASAN), Ari Ne’eman, posted a petition, emailed list-servs, garnered attention from multiple disability rights organizations, posted a sample letter on the ASAN website and distributed contact information for NYU and its board of directors. The arguments Kras describes them as using based themselves on concepts seen in Mel Baggs’ work in the 90s and again later, in the 2010s, after the Ransom Notes affair: that the ads stigmatized disabled people along with creating a sensation of doom that would not encourage parents to seek supports for their children, with the implication that disabled people should not be stigmatized but accepted and all disabled children and adults should receive the proper supports to navigate a world not made for them.
Where We've Been
Read this. It's where Autistic Tumblr has been.
Autistic Tumblr has been around for quite some time, starting small, growing ever larger. Of course, Autistic Tumblr is not the extent of activism in general, but I'm posting this on Tumblr, so I recommend reading it. @iamthethunder was actually there, so read that. I can't write to the history of Autistic Tumblr very well because I only popped up in 2013.
I also know that Tumblr isn't the beginning or end of activism, so. There are so many things we have participated in off Tumblr with people who are not on Tumblr. The history of autistic self advocacy as we know it tends to go back to 1993.
Autism is a particularly interesting part of neurodiversity. I don't say this just because I'm autistic. Neurodiversity was born out of the autistic community's desires to separate itself from a parent-based movement in the 1990s. I would argue that's a movement for a modern age, one that needs to be embraced.
“This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism. Therefore, when parents say, “I wish my child did not have autism, what they're really saying is, “I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.”
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure.”1 Jim Sinclair penned these words in 1993, and presented them at an autism conference as part of a larger piece entitled “Don't Mourn For Us.” It is largely considered the foundation piece of neurodiversity and the autistic self advocacy movement. Sinclair described the experience of being displayed at autism conferences “a self-narrating zoo exhibit,” where parents of autistic people would pepper them with questions about autism and not expect self advocacy. When Sinclair wrote Don't Mourn for Us, this surprised parents and created anger. Sinclair and others infiltrated listservs, conferences, and met other autistic people, and started talking for themselves. There was great controversy about this – they got kicked out of spaces quite frequently for being self advocates and activists.
Sinclair also created Autism Network International, a group comprised of listservs, forums and a print newsletter, with resources for autistic people, and also for parents of autistic people. ANI also hosted Autreat for many years, a space for autistic people to meet in person and have workshops.
ANI marked a fundamental split between parent groups at this point. Previously, advocacy work for autistics had been done under a cure culture mindset and by parents.
If one considers the larger disability rights framework, autistic self-advocacy developed particularly late, three years after the ADA was passed, in 1993. A group for autistics run by autistics that worked for change in public policy did not develop until 2006.
An example of when autistic advocates took a fight against cure culture occurred in 2007; Joseph Kras analyzed the response to the NYU Child Study Center’s attempt to raise negative awareness about autism and other psychological, psychiatric and neurological conditions. He writes that the “campaign consisted of several ransom notes posted on large billboards, ion kiosks, and at construction sites in New York City and published in Newsweek and New York Magazine.”2 The messages existed as dire warnings of what autism and the other conditions would do to people’s children. The Ransom Notes campaign response came swiftly, Kras notes, not in the form of lawyers arguing over whether it existed as a publicity stunt, but by a “grass-roots internet protest led by self advocates.”3
The president of the Autistic Self Advocacy Network (ASAN), Ari Ne’eman, posted a petition, emailed list-servs, garnered attention from multiple disability rights organizations, posted a sample letter on the ASAN website and distributed contact information for NYU and its board of directors. The arguments Kras describes them as using based themselves on concepts seen in Mel Baggs’ work in the 90s and again later, in the 2010s, after the Ransom Notes affair: that the ads stigmatized disabled people along with creating a sensation of doom that would not encourage parents to seek supports for their children, with the implication that disabled people should not be stigmatized but accepted and all disabled children and adults should receive the proper supports to navigate a world not made for them.
It has largely been marked as the time when neurodiversity came of age.
Social media has been integral to these movements. This is a movement which is perfect for my generation and newer generations with ever expanding networks.
Social media has been integral to these movements. This is a movement which is perfect for my generation and newer generations with ever expanding networks.
Where Do We Want To Go?
Inclusion and intersectionality, in my honest opinion, have to be key components of anything moving forward (I do have a section for it on my Resources page). Autistics of color have routinely been shut out of leadership positions in the broad disability rights movement, but not because they have nothing to say. There is a reason why you don't hear about the Black Panthers working during the 504 sit-ins with disability rights activists, and it is difficult to locate autistics of color in the birth of the neurodiversity movement. They may have been relegated to lesser positions or denied opportunities to speak. Autistics of color are also misdiagnosed frequently, which could be another reason.
However, disability rights organizations in the United States are also starting to pay more attention to the regular mistreatment of Autistics of color. I credit autistics of color themselves for pushing for it. I look to see the day where marginalized communities can figure out a really great approach to intersectionality. Oppressions tend to layer within one another, from LGBTQIA and queer oppression to racism to ableism. I want communities to build up, and up, and up.
I also look to having a close-knit community.
As @iamthethunder said, “ I hope it starts to feel small, though, and that people here are never content, always reaching for what comes next.” Cohesive action will be the name of the game in forging new paths of autism acceptance. Caring about each other and working to put differences aside will help. I am already proud of Autistic Tumblr and being Autistic.
On this Autistic Pride Day 2015, I challenge you to not only have pride in being autistic (if you can't, that is OK too. I am not blaming any autistic person for how they feel about their autism), but to think outside the box in regards to forming a thoughtful, progressive community. I want communities to build up and never stop. I never want this community to be in a position where one loose Jenga tile can send it all falling down.
1Jim Sinclair, http://www.autreat.com/dont_mourn.html
2 Joseph F. Kras, “The “Ransom Notes” Affair: When the Neurodiversity Movement Came of Age,” Disability Studies Quarterly 10, no. 1 (2010).
3 Ibid.
