Autistic Archive & the History of the Neurodiversity Movement ~ 918

Tim Villegas:
For the last 30 years, there has been a movement going on—one you may not know a lot about, or the origins of. It’s the neurodiversity movement, and our guest Ira Eidle wants to share what he’s learned about it. Ira is the curator of Autistic Archive, a collection of video lessons about the history of the neurodiversity movement, links to websites created by autistics for autistics, and recommended books written by people on the autism spectrum, among other resources.

My name is Tim Villegas, and you are listening to the Think Inclusive Podcast presented by MCIE. This podcast exists to build bridges between families, educators, and disability rights advocates to create a shared understanding of inclusive education and what inclusion looks like in the real world. To find out more about who we are and what we do, check us out at thinkinclusive.us or on the socials: Facebook, Instagram, or Twitter.

Before we jump into our interview with Ira, I wanted you to meet a friend of mine.

Bryan Nance:
My name is Bryan Nance. I’m 37 years old, and I have very minor Asperger’s.

Tim Villegas:
Bryan and I met when I was having coffee with a friend and inclusion advocate at a local coffee shop called Circle of Friends in Woodstock, Georgia. Circle of Friends employs people with and without disabilities to work together. There are a number of coffee shops like this in the area. One of them is very close to me—it’s called Independent Grounds in Kennesaw. Bryan works for both coffee houses.

Bryan Nance:
I work here at Independent Grounds as a barista and a janitor.

Tim Villegas:
Before his current jobs, Bryan felt stuck doing work that didn’t have much meaning for him. At Independent Grounds…

Bryan Nance:
I get to make friends. I get just a little time to myself, and I get to meet and help other people.

Tim Villegas:
And now that he has meaningful work, Bryan says it’s helped improve his quality of life.

Bryan Nance:
I’ve always enjoyed working here because I’ve got a boss that is a really, really nice boss. And then I’ve actually improved in certain skills. I’ve improved in my social skills, my behavior skills, and some other things. Though I still have some problems at home, I actually think I’ve improved in other places.

Tim Villegas:
Bryan didn’t want to get into specifics, but previously when he was in school, as well as an adult, he was segregated into disability-only spaces.

Bryan Nance:
I mean, before I used to have some problems back in the past, but we won’t talk about them.

Tim Villegas:
But now he loves working and he loves his boss.

Bryan Nance:
I feel like Laura and my other boss, I’ve known for a while, but I feel like there’s something special with Laura that makes me feel right at home.

Tim Villegas:
But he’s not satisfied. When I asked him about what his goals and dreams were for his life, he couldn’t wait to talk about them.

Bryan Nance:
Here we go. This is a good one. My goals and dreams are to at least try to get my driver’s license or at least a learner’s permit so I can drive around and be more independent. My mom and stepdad are getting old—and yes, I did say old—and I would like them to retire. At least let me go out on my own and give them time to relax. I actually have a lot of life left in me and I don’t want to waste it.

Tim Villegas:
On the wall of Independent Grounds there’s a sign that reads “Inclusion Matters.” I asked Bryan what that phrase meant to him.

Bryan Nance:
I feel like everyone should get along and not look at everything as a negative. If you know that there’s a good person out there that can share good ideas and stuff, no matter if they’re missing a part or don’t look right, they’re still a person too. And they should be included.

Tim Villegas:
If you are ever in the Kennesaw, Georgia area, stop by Independent Grounds on the side of the Bixby student apartment complex near Kennesaw State University. They’ve got some great coffee, and you just might run into Bryan. I’m sure he’d love to chat.

Tim Villegas:
Today on the Think Inclusive Podcast, we have Ira Eidle, who is from Decatur, Georgia. He is an autistic person who was diagnosed at a young age. Ira holds a bachelor’s degree in theater and performance studies at Kennesaw State University. Ira was a cohort of the Autistic Self-Advocacy Network’s 2020 Autism Campus Inclusion. He started a student organization on his campus called Neurodivergent Advocates of Kennesaw that he led for a year. Ira has also done undergraduate research on disability and performance, which he presented at the 2021 National Conference on Undergraduate Research.

More recently, Ira has been working on an archive of the neurodiversity movement known as Autistic Archive and is currently an intern at the Hirsch Academy in Decatur. In his free time, Ira likes to play video games, rest in his bed, spend time with his dogs, and browse the internet. Ira is a staunch proponent of the neurodiversity movement and believes that nobody is too disabled to live an autonomous life. Ira, welcome to the Think Inclusive Podcast.

Ira Eidle:
Hello.

Tim Villegas:
Hello. I’m really excited for you to be here. You live in the same state as me, which is great. I guess we first connected over social media—or at least I recognized your name and your comments and stuff like that. And then I saw you at TASH.

Ira Eidle:
Yeah, I did go to TASH.

Tim Villegas:
And then I saw that you had created this thing called the Autistic Archive. I dove into that and said, “This resource is fantastic. I need to have him on the podcast to tell people about it.” So would you just introduce yourself? I know I just read your bio, but would you kind of introduce yourself to our audience of educators?

Ira Eidle:
Yeah, sure. So I’ve been involved in the role of self-advocacy for about three years now. I started out by working with some local organizations. Then I moved to doing some stuff online. Now I’ve kind of moved back to doing stuff locally and online too, I guess.

I mainly got my start with a local ASAN affiliate group on advocacy in Atlanta, and then I just branched out from there to other things. I’ve kind of been jumping between different things because I’m so new to this. I think it’s mainly because I was finding what exactly my niche was in this field of self-advocacy. And I think the archive is at least a step toward me finding what exactly that is.

Tim Villegas:
I would say because I don’t think there’s anything like it.

Ira Eidle:
Well, there have been—just nothing that’s current.

Tim Villegas:
Hmm.

Ira Eidle:
I’ll get to that in a bit.

Tim Villegas:
Okay. Well, why don’t you explain to our audience: What is the archive? And then we can dive in from there.

Ira Eidle:
Certainly. So Autistic Archive is a collection of materials related to the history of the neurodiversity movement. It includes websites, forums, graphics, videos, audio files, articles, among other things.

I think it’s necessary because the neurodiversity movement has been around for about 30 years now, and much of that history isn’t widely known. A lot of people assume that it’s only been around for maybe 10.

There have been other archives—this is what I was alluding to. There have been other archives, particularly ones I listed under websites. Some weren’t autistic-specific but had some autistic content, like Mouth Magazine and Ragged Edge, which are both really great resources.

But there was one in particular called neurodiversity.com. It was maintained by a woman named Kathleen, who I believe was a parent of an autistic person—not autistic herself—but very involved in the community. Her archive focuses a lot more on the science side of things than mine does.

I really wanted to showcase the autistic side of the history and the history of the autistic community and autistic self-advocacy and the neurodiversity movement specifically. That website hasn’t been updated since 2008. A lot of links are broken, and a lot has happened since then.

I think there also needs to be better education about this movement’s history because there tends to be a lot of misinformation about it, as well as people repeating past mistakes.

Ira Eidle:
The way I started with this was I found a site on Web Archive called autistics.org. It can only be accessed through Web Archive. The main two people who were in charge of it were Mel Baggs and Laura.

I started a Google Doc and went down the line—they had a lot of other resources that led to other websites. So I started putting the links to all that stuff in several Google documents. Then I moved them to a Google Drive folder and called it Autistic Archive.

The project began in earnest once I decided to move it all to Google Sites to make it a website. That took about a month or so of work to get it ready to launch.

Once it was ready, I sent it out to several people, including a private group of alums. A lot of people were very pleased with it. In particular, Julia Bascom, the executive director of ASAN, messaged me and said that this was a great labor of love—which I didn’t even really think of it that way until then, but yeah, I guess it is.

I love the neurodiversity movement with all of its ups and downs. I just thought of it as something that needed to be made. I’m interested in this stuff—let’s get to work.

Tim Villegas:
Yeah, and again, I am slightly familiar with some of the resources and websites that are on the site, but a lot of them I had never heard of. So I think Autistic Archive is an incredibly important and valuable resource for people to understand the movement.

So I think you know where we are coming from as far as thinking inclusive and inclusive education. But one of the criticisms of this idea of inclusive education and people being educated together is that students—particularly K-12—there is some value with autistic-only spaces or spaces designed for people with autism. I wanted to know your thoughts about that.

Ira Eidle:
Oh yeah, absolutely. I think it all depends on who’s in charge. As the late Roland Johnson would say—he was involved with Self Advocates Becoming Empowered and was a survivor of institutionalization—he gave this really powerful speech in the ’90s about who is in control. Is staff in control, or are you in control?

That’s a very important principle. You can have autistic people involved with something, but if they’re not truly in charge, if they’re not in the driver’s seat, then is it really meaningful involvement?

Things like Aspergia go way to the extreme where it’s like, “We should have our own country,” or where it gets into the homogenous society kind of utopia. I don’t think that’s what most people want.

What you meant is more along the lines of what people want—or even if something is a school made specifically for a certain population, if it’s by that population, it’s completely different. Gallaudet University is not the same as an oralist school for the deaf, you know what I mean?

So I think there’s value in having both inclusive general ed and things like Gallaudet—and really the Hirsch Academy, which you mentioned since that was in my bio.

Tim Villegas:
Right. And I guess I would say also if it’s truly a choice, right?

Ira Eidle:
That too, yeah.

Tim Villegas:
Yeah. And at least from our perspective, the majority of times students are separated or segregated, it’s not by choice.

Ira Eidle:
Yeah, exactly. Because it’s “the best the school could do for them,” right?

Tim Villegas:
Right, exactly.

Tim Villegas:
As you’ve been doing this work recording the history of the neurodiversity movement, has there been anything that you’ve uncovered that really surprised you?

Ira Eidle:
Quite a few things have. When I look back at the old discussion forums and blogs, I see that the way people in the movement talk about things has certainly changed, but it’s also fundamentally stayed the same.

Thirty years isn’t that long, but even now, the neurodiversity movement still has a lot of the same core principles and central conflicts. Those include:

• Who are the ultimate experts on autism?
• What causes autism? Is that even important?
• What things are respectful to say about autistic people and what aren’t?
• What kinds of service provision are the most appropriate?

The content on autistics.org has aged better than most of what you’ll find on the archive, and it’s also one of the oldest things on there. A lot of that had to do with Mel Baggs.

I don’t know how much you know about Mel, but Mel Baggs was an excellent advocate and an amazing person, at least from what I know. I didn’t personally know Mel, but from what I know, they were brilliant and an excellent writer in particular.

Now, there is plenty of history leading up to autistics.org. I think the place to start when you’re talking about the history of the neurodiversity movement is the history of Autism Network International because that’s when it really got off its legs. That’s definitely where you should start. After that, I’d say autistics.org is a good second step.

There are plenty of things I’ve found that both fascinated and disturbed me in about equal amounts. A lot of the more disturbing stuff I’ve purposefully kept off the website, though I certainly want to find a way to discuss it—especially with a critical lens. That’s kind of why I’ve done the videos: so I can talk about things like Aspergia, but also Wrong Planet and other things that I don’t necessarily have on my site but still want to discuss.

It’s important to talk about what went wrong here—or what’s still going wrong—and why it’s problematic. What can we learn from this? That’s really the essential thing that comes with the video lessons:

• What happened?
• What went well?
• What didn’t?
• What can we learn from this?
• And what does this say about the history of the movement?

Tim Villegas:
So what I’m hearing is that there are parts of the neurodiversity movement that are problematic and continue to be. And you want to be able to talk about those things without promoting them.

Something that I learned watching the videos was about the email listservs. I went to college in the late ’90s and early 2000s, so I remember listservs. They were part of my digestion of information. You highlighted some listservs that were early on—even before the internet and forums were really a thing, right?

Ira Eidle:
Yeah. Well, like ANI and St. John’s Autism Listserv. ANI-L was created because several autistic people—including Jim Sinclair—and cousins (people with similar disabilities but not exactly autistic) didn’t feel like they were really being respected on that list.

There was something called the “Snore Wars,” where Jim Sinclair playfully teased a guy named Steven Drake about snoring at a conference. They had a playful conversation about snoring and even talked about llamas a little bit. That became an in-joke with ANI because a lot of the members had an interest in llamas.

One of the parents who ran the forums said, “You’re wasting bandwidth,” which is wild to think about now. That definitely wouldn’t waste bandwidth today, but it was limited back then.

There were other incidents where they felt they weren’t respected, so they said, “We’re going to make our own list.” It was eventually moved to Syracuse University. I actually tried getting access to that but wasn’t successful. If I ever do, that’s going to be a treasure trove because ANI-L is one of the really early ones.

Tim Villegas:
Well, let me take this opportunity: whoever is listening—because I bet somebody from Syracuse listens or has listened to this podcast—

Ira Eidle:
That would be cool.

Tim Villegas:
Anyone with information that could help the Autistic Archive and Ira collect this information—that would be great. At the end of the podcast, we’ll make sure you give all the information on how people can get ahold of you to help with this project.

As you know, a lot of our audience are educators—general ed teachers, special education teachers, principals, district administrators. What would you want educators to know about the neurodiversity movement?

Ira Eidle:
I want them to know that it’s been around for a while—probably much longer than most assume. A lot of what educators and people in general have been told about the movement’s history is likely either inaccurate or just limited. That’s not necessarily a bad thing; that’s just how it is.

That’s why the archive is here. I’ve done a lot of research into this, but I’m by no means the ultimate authority on it, nor can I give you the most authentic perspective. I’m 24 years old—when most of the early stuff was happening, I was either not born yet or a baby.

The good news is most of the OGs of the movement are still around, and you can ask them for direct recollection of things that are on there that I’ve talked about. I’m simply a curator of history. But as neurodiversity and disability rights have stressed time and time again, nothing beats lived experience.

Tim Villegas:
What lessons do you think an educator could take from learning this history?

Ira Eidle:
I think they could take that autistic people and neurodivergent people—we’re capable of organizing our own things. And I think we’re just as good at it as non-autistic people are, honestly.

There have been moments of victory and celebration. There have also been things that went wrong. I don’t think that says anything about our condition or disability. I think it just has more to do with human nature.

Everything that’s happened in this movement’s history is just human nature. Of course, it has a very particular look to it because autistic and neurodivergent people have been at the helm of it. But at the same time, every kind of human thing has happened between us. In that regard, I don’t think we’re that exceptional—we just happen to have a particular brain wiring.

Tim Villegas:
So let’s say, Ira, the Autistic Archive—you could do anything you want with it. What would be your goal and dream for the archive?

Ira Eidle:
I’m hoping to eventually teach a class on this—probably an elective at a university. The videos I’ve made under “Lessons” are laying the framework for that. I’ve got a whole curriculum laid out, which is really just the stuff I’m going to go over in the videos.

If this were a class, that would be the curriculum. I’ve already done a little bit of teaching the students at Hirsch Academy about this, and I hope to present it to more people because I really want to talk to people about this. I just think it’s super interesting.

I also hope for the site to grow and perhaps move to a more formal host. Google Sites is fine and it’s free, but it’s not the most robust web-building system. Regardless, I very much intend for Autistic Archive to be a long-term project.

Tim Villegas:
Awesome. Well, yes—if you’re listening and you think this resource is as fantastic as we do, please contact Ira and let him know how you can help him with the Autistic Archive.

So Ira, why don’t you drop in your contact information and how people can get ahold of you?

Ira Eidle:
Yeah, there’s a “Contact Me” tab on the website that has my personal email that I’ve had since I was 12—it’s very obvious a 12-year-old came up with it. But a more formal email is iraeidle@gmail.com.

I’m also on LinkedIn—you can message me there. I have social media, so any platform you can find me on, feel free to message me. Or at me on Twitter at @eidle_ira. I’m completely fine with whatever way you want to contact me about this.

Even reach out if you want to write it on a scroll, put it in a bottle, and ship it to me.

Tim Villegas:
Send it by owl.

Ira Eidle:
Yeah.

Tim Villegas:
Well, Ira Eidle, it was a pleasure having you on the Think Inclusive Podcast. We appreciate your time.

Ira Eidle:
Thank you.

Tim Villegas:
That will do it for this episode of the Think Inclusive Podcast. Subscribe to the Think Inclusive Podcast via Apple Podcasts, the Anchor app, Spotify, or wherever you listen to podcasts.

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