The movement for autistic rights has been building momentum for decades, but we’re often so busy doing the work of advocacy and activism that we neglect to document our projects. One person who’s making sure our autistic history is not forgotten is Ira Eidle.
Eidle is the curator of the of Autistic Archive, an online resource that responds to “a need for better preservation of information related to the Autistic Community and Neurodiversity Movement’s history.” The archive’s website and YouTube videos are powerful resource for researchers—documenting “where this movement comes from, and where it could be going.”
I recently chatted with Ira, who has also been involved in community-building and advocacy (including ASAN’s Autism Campus Inclusion program). We conversed about the archive, autistic history and activism today.
Anne: Tell me about the archive: what got you started to work on it?
Ira: I was aware of the history of Neurodiversity for a while, including Autism Network International and Autreat. Reading the anthology Loud Hands also gave me somewhat of an idea as to what the Neurodiversity Movement was like in the past. It was published in 2012, and I read it in late 2019 and early 2020. Later, I found Autistics.org and really liked a lot of the content from there. There’s also a publicly available [open access] textbook Steven Kapp published in 2019 called Autistic Community and the Neurodiversity Movement. I saw Laura Tisoncik, one of the people behind Autistics.org, talk about how she wanted to see preservation of its contents. I thought to myself, “maybe I could be one of those people!”
Taking in everything I mentioned, I decided that I wanted to compile a list of things. I started with a Google Drive folder. It was partially a way of coping with stress I had with it both being finals season and Autism Month. Then after a few months of research, I started putting together the Autistic Archive website on Google Sites.
Anne: Interesting! What is your vision for the archive?
Ira: Originally, I was hoping of having a timeline that showed the exact dates (or at least estimates) for everything I found. I may still do that someday, but ultimately I decided to split my findings into categories, and the categories you see on the site now are a result of that. I feel like they could maybe be a bit clearer and that I could perhaps divide things into more sections, but I haven’t gotten any criticism of how I organize the content, so it may be a non-issue.
My ultimate vision for it is for it to be a central hub of information on the Neurodiversity Movement. A place people can go to if they ever need a specific link or if they need to find out what the origins are of a concept in the Neurodiversity Movement.
I also want it to be a place for people newer to the community to visit so that they can catch up on the history.
Anne: What are some of the challenges you’ve faced in developing the archive?
Ira: Not everything has been preserved. That includes very important stuff. The ANI-L Listserv, which is deactivated, included a lot of early conversations and writings, including the “Our Voices” sections of ANI’s newsletter, which was where Don’t Mourn For Us was first published before Jim Sinclair gave the speech at the Autism Society of Toronto’s 1993 conference. I’m currently trying to see if there is a way I can access the ANI-L Listserv, but from what I have tried so far, it doesn’t seem likely that I will be able to.
Another challenge I’ve faced is the death of Adobe Flash Player. I will something find a relevant link via Web Archive, but part of the webpage will be inaccessible because Flash is no longer supported, and I don’t find it likely that many of the things that require Flash were preserved before it went away.
Anne: What is something you’ve learned about our community from doing this project?
Ira: Gosh, so much. For one, many of the conflicts you see now were either the same or similar 20-plus years ago. Another thing I’ve learned is that we have indeed come a long way. There are still problems multiply marginalized autistics face in the community, [and] Aspie Supremacy, which is still very much a thing, but it used to be more blatant. Interpersonal conflicts were very much a thing, as they are now. Not all autistic people had the same opinions on things.
I will say, however, that among a lot of the more dated content I often come across, Mel Baggs never missed in hir writings. Mel had the right idea about so many things that I think self-advocates still struggle to understand now. I think a lot of that is because Mel was more impacted by ableist systems than many other autistic people-in fact, sie died from it. Laura Tisoncik was too, and I think that’s why Autistics.org has aged particularly well. It was led by those two.
Anne: Why is it so important that we keep a record of our activism?
Ira: People who lived those events can reminisce about it, and people who are newer can learn their history and hopefully not repeat the mistakes, while admiring what has been done right. They can also use it as a way of brainstorming how to be even better.
Anne: What about the future of the archive? You mention that you might be doing an oral history project.
Ira: I did! I’d still like to do that, I just haven’t gotten around to it yet. It would most likely take the form of a podcast. Other than that, I have a queue of people and topics to add and hope to uncover important developments to add to the archive, as well as finishing the Lessons series [videos on the history of our movement] which is more than halfway done at this point. There’s still a lot for me to read through, so there’s a lot I still may uncover just from that.
Anne: There is so much grassroots work by autistics who gather data in our community, whether for activism, or to educate parents of autistic people, or for advocacy. We’re good at data! I’m wondering if you have thoughts on how autistics have put this passion for data to work in our advocacy—and why data and resources are such an important part of our movement.
Ira: I think it’s important to have resource libraries. Data can also be a way of demonstrating that commonly held beliefs in our community have some validity to them. For that reason, I’m glad that there are autistic researchers. The neurotypical researchers will take longer to get around to topics that autistic researchers are already covering, and probably won’t do as good of a job at it anyway.
Anne: You and I met a few months ago, while organizing to try to stop 11Alive News (Atlanta) from showing meltdown videos of autistic people via an ABA advertorial running on the station’s website. Unfortunately, the station did not take down the meltdown videos. How did they respond?
Ira: They responded with radio silence. It was disheartening, though not surprising. One thing they did do (at least I think so-it may have just been a detail I missed) was add a notice to the top of the story saying that “these children’s parents shared these painful videos to educate others and raise awareness.”
Anne: Yeah. As we talked about, that makes it worse instead of better.
Ira: It is a very common response to publication of meltdown videos. 11Alive has released another video of an autistic boy melting down in his own home. It seemed to be to call for more ABA services for autistic teens and adults. This is a series, so there will be more in the future.
It’s honestly terrible, though not uncommon for a news station to portray autistic people like this. It’s less common for there to be good portrayals of autistic people in the news media. It certainly exists, and there are excellent autistic journalists, but it’s far and few between.
Anne: One thing I was really moved by was the way you reached out to 11Alive in your letter. You wrote: “Even though I am being critical of you and your station for a story you produced, I am also willing to collaborate on a new story that is more accurate and one that involves the input of autistic people about appropriate services that receive less funding from insurance than ABA.”
But again as you said, this outreach was ignored. This often happens; we make our best efforts and they just will not engage. What do you think stops organizations like 11Alive, or some individuals, from accepting the opportunity for education?
Ira: You know, I really don’t know. In theory, they should be open to education from the very people they’re reporting about. However, as history has shown, that is not always the reality. One guess I have as to why the lack of interest happens is that perhaps they see calls for accountability as attacks, but that’s honestly not my problem. I’m not anti-news media nor do I have a vendetta against 11Alive. This incident is quite disheartening, though.
Anne: I think that every step, even when we don’t get the result we wanted, is a step towards visibility. And there are also those moments when we do get a response that directly moves us closer to human rights.
As an archivist, how do you see the arc of our history this past 30 years, in terms of progress?
Ira: There were protests of a pro-cure rally by users of Autistics.org around the year 2000 via a series of letters and emails to the organizers. It doesn’t seem to have stopped the rally from happening, but it at least showed that autistic people had concerns about the way they were being talked about. There are a number of campaigns done over the years, some featured on my website, that certainly have led to more visibility… the #StopTheShock protests, the Ransom Notes campaign, the many protests of Autism Speaks there have been over the years, #BoycottToSiri, the protests of Sia’s movie in 2021…
All of them have served a purpose. All of them have been stepping stones. Successful or not, they get us closer to where we want to be.
