Episode 181: Nonspeaking autistic advocate for inclusive education – with Jordyn Zimmerman

The episode transcript is below.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

Thanks for joining me. I’m so excited about today’s interview with Jordyn Zimmerman. Jordyn is a non-speaking autistic advocate for people with disabilities and for inclusive education. I’ve admired her advocacy work and her impact for a long time. You’ll hear me read off her very impressive bio in a few minutes.

Her advocacy is informed by the many challenges she faced growing up as a nonspeaking autistic student in school. Most of these challenges came from a lack of access to a method of reliable communication, systemic barriers and ableism and bias, where too many people just refused to recognize her intelligence and abilities.

Since Jordyn is nonspeaking, the flow of our conversation will sound a bit different from most of my other interviews. She communicates by typing on her iPad, which reads her responses out loud. To help prepare for this conversation, I sent Jordyn some of my questions beforehand so that she could type her answers ahead of time into her iPad and play them out loud during this interview. I also asked Jordyn some spontaneous unplanned questions, which she answered by typing her responses live during our conversation.

This means that after I ask Jordyn a question, you’ll hear a silent pause. That’s when she’s preparing and typing her response. These pauses are anywhere from a few seconds long to a few minutes long. Now usually podcasts try to avoid long periods of silence, but these silences are important for this episode. In fact, Jordyn specifically asked me to leave these pauses in the recording because they show an important part of her humanity and so much more. You’ll hear Jordyn talk about the importance of giving people with communication disabilities time to respond in a conversation, since they can’t interrupt or interject in the same ways or at the same speed that most conversations flow in this world. This is also consistent with the spirit of Beyond 6 Seconds, and the reason I picked that name for this podcast: to make a platform where people can have the space and time to share their candid stories in their own authentic ways.

Okay, so here’s some information from Jordan’s bio before I welcome her to the podcast.

Jordyn Zimmerman earned her bachelor’s degree in education policy from Ohio University and her Master’s of Education at Boston College. As a nonspeaking autistic student who was denied access to effective augmentative communication until she was 18, Jordyn has personal experience challenging the educational status quo. Her experience is featured in the 2021 documentary, This Is Not About Me.

Technology helped open Jordyn’s world and she began advocating for students. She has keynoted and presented at conferences around the world, is on the board of CommunicationFIRST, works as Director of Professional Development at the Nora Project and has been featured by prominent media outlets. Recently Jordyn was appointed to serve on the president’s committee for people with intellectual disabilities.

Jordyn is passionate and determined to make a difference in the world of education, making sure every student can access effective communication and exercise their right to a truly inclusive education. Jordyn, welcome to the podcast.

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: Hi Carolyn. Thanks so much for having me.

Carolyn Kiel: I’m really excited to talk with you today. You have done so many amazing things for the autistic community, for nonspeakers, and for children everywhere in terms of getting kids the inclusive education that they need and deserve. First, I’d love to start out and learn more about your life growing up. What was your life like before you could communicate by typing?

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: It was really challenging for me. I was in a perpetual state of discomfort and dysregulation within my own body. There was so much I wanted to say, so much I wanted to add and so much I wanted to change, that was all built up in my head. But I had no way to effectively or reliably share it all. I was also in many spaces where the expectations were annoyingly low, which caused my frustration to be really high.

Carolyn Kiel: Wow. Yeah. And how were you treated in school during this time?

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: School was tough. There was a heavy focus on compliance-based activities rather than meaningful instruction. I was most often segregated in small rooms away from other students when I was attending my district of residence.

My brother is three years older, so this added another layer of both excitement but also sadness. I saw him do and engage in a lot of things that I wanted to do. That sibling dynamic was hard. There were also many years where I was sent to out of district placements, which were anywhere from 30 minutes to over an hour away. In those placements, I also experienced frequent segregation and restraint, and then was away from my community. Now that I’m older, I think about this a lot and how much the school is a hub within a community. When we take students out of that space, it has a long-term impact.

Carolyn Kiel: Wow. Yeah. That is something that I think a lot of people don’t realize or even think about. And it sounds like you were moved to a lot of different school situations and that a lot of those frustratingly were not giving you the education you needed.

I watched your documentary, This Is Not About Me, so I got more of a, a history and understand a little bit deeper from you explaining what happened in some of these school situations. If I’m understanding correctly, the education you were being given was very, very basic. Not like high school subjects or even middle school subjects. And correct me if I’m wrong, but they were teaching you the same things over and over and over and over again. Is that correct?

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: Yes, I can still see myself sitting at a table at the age of 18, with my teacher standing over me, guiding my arm as I completed very basic single digit math problems. The sheet was laminated so I could do it again and again, as if I needed that constant repetition. That was school until I was finally included after I could prove myself through my iPad.

Carolyn Kiel: Wow, that just sounds so frustrating.

Now you communicate using your iPad. That’s how we’re communicating now. So how did you get introduced to typing to communicate?

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: It was a slow process that I’d like to think was many years in the making, due to the tremendous advocacy of my mom who believed in my right to a free and appropriate public education alongside non-disabled students. But she also recognized that I needed supports. So she advocated for every type of assessment, including an assistive technology assessment, and the district refused because I wasn’t compliant and my support needs were too severe, in their words.

Eventually, after I was home for a while due to a series of unfortunate events, and I began using symbols on an iPad, the school agreed to a full assistive technology evaluation. That was in spring of 2014, I believe, and the next school year I slowly transitioned to typing.

Carolyn Kiel: Wow. So yeah, it sounds like your mom was one of your strongest advocates and that it took a lot to convince the school to finally do that assessment that you deserved and needed.

Wow. So how did your life change once you were able to communicate by typing?

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: My life changed in every way because effective communication is necessary for every facet of one’s being. It’s a human right, and it’s been recognized as such. It’s needed for everything we do as humans. When I could not effectively communicate, there were a lot of assumptions made about me. Once I was able to communicate via iPad, I was able to debunk those myths and direct my own life. At school, this meant that I was finally able to learn challenging and interesting material, participate in curricular opportunities, and engage with other students in an authentic way. It also meant thinking about and having honest conversations about my future, both what I envisioned and what I needed. However the ableism still existed. Unfortunately, people still did and still continue to question my worth.

Carolyn Kiel: I remember from watching your documentary, you talking about that even as you became more and more fluent with communicating by typing, that people in the schools and elsewhere still continued to challenge your intellect and abilities. But still, regardless of that, you were able to get through your early school years and go on to college, and then go on and get your master’s degree after that. And for college, you went away and lived for the first time on your own. What was it like living on your own for the first time when you were in college?

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: College was the first time I was on my own, in the sense that I was away from my family, but I wasn’t really on my own. I was with 25,000 other students who were also learning to navigate new things and new experiences. Being away from my family was really hard. There were many times where I just wanted to go home for many different reasons. Sometimes because I was going through a challenging medical moment or I felt like I didn’t belong, or I just felt really unsupported. Though at the end of the day, I knew I needed to be there and I knew I could be successful with creative supports. For the most part, I loved living in the residence halls, roaming around campus and living in the middle of nowhere with absolutely nowhere to go.

Carolyn Kiel: Yeah. College is a time of exploration and newness, I guess, for all students. Yeah, I could see that as a common experience, you know, on top of just the challenges of being away from home for the first time and not always having the same supports or the supports that you need.

And you also started a cheerleading team in college. Tell me more about that.

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: As a subset of Generation Spirit, formerly the Sparkle Effect, while I was at Ohio University, I started the seventh inclusive collegiate cheerleading squad in the nation. The team is still practicing and cheering, composed of students who identify as both disabled and non-disabled. And the purpose is to essentially change the campus culture, proving that all students belong in all areas of college life. Especially cheerleading, it’s easily adaptable and there’s no reason it can’t be more inclusive to all ways of being.

Carolyn Kiel: That’s so cool. So now you’re a passionate and prominent advocate for people with communication disabilities. Tell me about your advocacy.

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: I am definitely passionate. Not sure about the prominent part, but my advocacy is quite simple. I believe every student has the right to be supported in a way that allows them to access a truly inclusive education and effective communication. And then instead of how the system currently perpetuates exclusion throughout a person’s life, I expect inclusion early on to create a vibrant life of community support for everyone.

Carolyn Kiel: Yeah, that’s really great. And you also work with an organization called CommunicationFIRST, which does amazing advocacy for nonspeaking autistic people and really a whole range of people with communication disabilities. Tell me a little bit about the work you do with CommunicationFIRST.

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: CommunicationFIRST is the only national nonprofit dedicated to protecting and advancing the rights of the estimated 5 million people who cannot rely on speech to communicate. We are a cross disability organization, so we advocate for people who are born with communication disabilities and people who acquire communication disabilities. We welcome everyone in our advocacy.

Carolyn Kiel: That’s great. Yeah. Great organization, great work there.

So I mentioned a couple times your documentary, which came out in 2021. It’s called This Is Not About Me, and it’s a great film. I recommend that everyone rent it and watch it. It’s really, really great. How did that opportunity come about to be the feature of a documentary?

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: It was pretty serendipitous.

Carolyn Kiel: Did someone come and approach you about doing a documentary or was it someone that you met who had the idea?

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: I was approached. I could have never imagined being part of a documentary, but I’m so glad my story is helping others, because as the film says, this is not about me. Unfortunately, this is the terrible reality of so many.

Carolyn Kiel: Yeah. It’s based on your life. A lot of it is really heart-wrenching to see what you went through and, and the ableism and the structural challenges and, and all the challenges that you had to overcome to get where you are. It’s also a great, a great testament to all the great work that you’re doing. So I really do recommend that people rent it.

So speaking of that, where can people go online to find out more about your work and your advocacy?

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: I have a website, JordynZimmerman.com, so just my first name and my last name. I’m also on social media, including Instagram and Twitter at JordynBZim.

Carolyn Kiel: Okay, perfect. I’ll put some links in the show notes to your website and some of your socials so that people can find it there too.

Jordyn, I’d love to close out by getting some of your advice for our listeners. How can people without communication disabilities be better allies to nonspeakers?

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: There’s many things I could say. However, I’ll keep it simple. Listening is really powerful, but people without communication disabilities also have to give us time. Those of us who are nonspeaking, we can’t interrupt and project ourselves in conversations in the same way that others can. If you aren’t intentional about pausing so we can contribute, you quickly send the message that our way of contributing and what we have to say is not worthy.

Carolyn Kiel: Yeah, that’s really important. Because we’re in a world where there’s a lot of loud and quick communication and interrupting and shouting, and we lose, with that we don’t get to hear from a lot of different people who have so many valuable things to say and contribute to our conversations. So yeah, absolutely giving that space.

And what advice do you have for nonspeakers who may be struggling right now?

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: Someone once told me that there is no such thing as a challenging day, but there are challenging moments. Sometimes you might have a lot of those challenging moments. I can’t promise it will get better, but I can promise it’s worth it to be tenacious in your pursuits for better. You matter.

Carolyn Kiel: Really, really powerful words of wisdom. So yeah. Thank you Jordyn for that. And thank you so much for being a guest on my show. I really enjoyed talking with you. Thank you for all of the great work that you do.

Jordyn Zimmerman: [typing her response]

Jordyn Zimmerman: Thanks for having me.

Carolyn Kiel: Thanks for listening to Beyond 6 Seconds. Please help me spread the word about this podcast. Share it with a friend. Give it a shout out on your social media, or write a review on Apple Podcasts or your favorite podcast player. You can find all of my episodes and sign up for my free newsletter at beyond6seconds.net. Until next time!