S6. Ep. 3
Jordyn Zimmerman

Jordyn Zimmerman, nonspeaking autistic advocate, shares her personal experience and insights on inclusion and belonging. Check out the episode now or view the full transcript below. To access closed captions, you must be logged into a Podbean user account.

Amplify Inclusion is a podcast where we share authentic stories of inclusion in action.

Related Resources: Jordyn’s Website | This Is Not About Me (Film) | The Nora Project | CommunicationFIRST

To view all of Amplify Inclusion’s episodes click here

This episode was co-produced and engineered by Subframe Sound with music courtesy of Nealle DiPaolo. This season is made possible thanks to generous support from the Fred J. Brunner Foundation, Bernstein, The Boutelle Family, Horton, Liventus INC, United Healthcare and members of the Aspire community.

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Full Transcript

(light music) 

Clare 00:02 

Welcome to Amplify Inclusion. I’m Clare from the nonprofit Aspire. Thanks for joining us for  stories and conversation about disability inclusion. Today I’m joined by Jordyn Zimmerman,  nonspeaking autistic advocate. Her experience navigating the education system while being  denied access to communication is documented in the 2021 film titled ‘This Is Not About Me’.  Jordyn currently works at The Nora Project, serves as board chair of CommunicationFIRST, and  is an appointee on the President’s Committee for People with Intellectual Disabilities. Jordyn  uses an iPad to communicate, which means she types her responses and the device voices  those words. You’ll notice that each time I ask a question, there’s a silent pause while Jordyn  types her response. While it’s standard to remove silence in the editing process, we’ve  intentionally left these pauses in per Jordyn’s request. These pauses humanize Jordyn’s perspective and authentically reflect what it’s like to converse with someone who uses a device  to communicate. With Jordyn’s permission, we’ve shortened each pause while staying mindful  of episode length. When you hear these periods of silence, keep listening. Here’s our  conversation… Jordyn, thank you so much for being here with us. I’d love to have you say hello  and provide a brief image description of yourself. 

Jordyn Zimmerman 01:40 

Thanks for having me, Clare. I’m Jordyn, a white woman with wavy brown hair. I’m wearing a  lavender shirt. Super nice to be wearing short sleeves since it’s getting a bit warm out. And I’m  sitting in my office in front of two floral paintings. I currently work at The Nora Project, which is  an organization focused on empowering educators with resources and engaging students with  curriculum, all to build inclusive classrooms. Beyond that, I am Board Chair of  

CommunicationFIRST, the only cross disability national nonprofit dedicated to advancing and  protecting the rights of the estimated 5 million children and adults who cannot rely on speech to  be heard or understood. CommunicationFIRST works on ensuring access to robust  communication tools, improving access to health care, improving self-determination, issues  around education, and more. I am also on the board of Hillel International, the world’s largest  Jewish campus organization. And I’m currently a presidential appointee serving on the 

Presidential Committee for People with Intellectual Disabilities. So lots of different projects and  work but all interconnected in meaningful ways. 

Clare 02:53 

I’ve been able to get to know you a bit more Jordyn through your work with The Nora Project,  which is a local Chicago nonprofit and partner organization of Aspire. I also learned more about  you from the documentary you were featured in called ‘This Is Not About Me’, which I definitely  recommend to anyone interested in learning a bit more about your story. And I’m just really glad  to have you here so that I can hear more firsthand from you about your experience, what you’re  passionate about, the work that you’re doing now, we have so many things to talk about. So I’d  love to just start off by having you share more about who you are and your journey. 

Jordyn Zimmerman 03:39 

Yeah, of course, I identify as a nonspeaking autistic person who types to communicate. I was  denied access to robust language based communication for the first 18 years of my life and had  really unreliable ways to communicate during that time, which was really difficult. Some of my  story is featured in the 2021 documentary you mentioned titled, ‘This Is Not About Me’, though  gaining access to technology. And a reliable and effective way to communicate was only one  tool on my journey. It was a tool that really helped me and I was eventually able to graduate  from high school and go on to college. Now, I’m extremely passionate about changing the  system and policies to ensure that every student is able to access effective communication and  exercise their right to a truly inclusive education. 

Clare 04:31 

You’ve learned so much and experienced so much that informs how we can make change going  forward. And I really appreciate how committed you are to advocating on a larger scale. So I  want to thank you for that because I think that you’re doing a lot of great things and you’re  making a big impact with the work that you’re doing. I want to come back to one thing that you  said in your intro in identifying as a nonspeaking person, and I wanted to talk a little bit more  about that, because you and I have discussed previously that you know, words and terminology  and how we label people – it matters right? It informs our perceptions. It informs the way people  think about themselves. And I want to talk about that term nonspeaking. And hopefully you can  help me explain why nonspeaking is the most appropriate term for you and for others who who  use that term as well, and why terms like nonverbal can be problematic. 

Jordyn Zimmerman 05:39 

Yeah, so I’d preface this with different people, depending on disability and other lived  experience have different preferences when it comes to how folks want to or prefer to be  identified. In the autistic community, saying nonverbal most often is not the preferred  terminology. To understand the implications of the word nonverbal, it’s important we really think  about what it means and what a terms such as nonspeaking means. The Latin root word verb  means words, when we say nonverbal, we are thereby saying someone is without words, or  without language. That is a big claim or assumption to make about a person. We also need to  know the difference between speech and language, speech and language are not the same  thing. Speech is the motor process of expressing language. Language is a cognitive process  that involves perceiving, understanding, and producing concepts. These are also processed in  different parts of the brain. When terms such as nonverbal are used, it then incorrectly implies  that someone cannot understand or use language. It’s especially not accurate to say that  someone who’s nonverbal before someone has access to effective and reliable communication, 

and even more so when that is then used to deny services and supports and a robust  education. For me, for years, people talked about me like I couldn’t understand them. And even  like I didn’t exist. Without any way to show my language, I remained segregated, often in a room  completely by myself fighting through repetitive tasks. Because I didn’t have reliable  communication to prove otherwise, the pattern continued. Unfortunately, this is still the  continued reality for so many students. It’s also really important to note that some folks don’t like  the term nonspeaking. So it’s always good to respect the individual preferences of people.  Another way to convey this all is by saying someone who cannot use speech to communicate,  and some people just like to talk about how they communicate. So maybe they’ll refer to  themselves as a typer, or an AAC user. 

Clare 07:49 

I’m glad you brought up AAC. So I want to make sure that we’re defining what that is and  making sure people understand the different forms of communication that different people may  use. So AAC stands for augmentative, and alternative communication. And I’m hoping you can  talk a little bit more about what those different forms of AAC may be, and also share more about  what tool you’re using to communicate. 

Jordyn Zimmerman 08:27 

Sure, as you said, AAC is short for augmentative and alternative communication. It really  encompasses all the ways someone may communicate besides speaking, it refers to any tool or  method or support to help someone be heard or understood. The augmentative is usually meant  to add to someone’s speech, and the alternative is usually meant to be instead of someone’s  speech. There are so many different types of AAC – low tech and high tech, and different types  of access methods, such as partner-assisted scanning, eye gaze, direct selection, and more.  For me, most often, my AAC is iPad with an application called Proloquo4Text. 

Clare 09:10 

I was just thinking about, you know, how quickly and rapidly technology is advancing, and how  that’s probably continuing to impact you know, the different tools that are accessible to folks to  communicate. Did you always use this tool and that software to communicate? Or have you  found something that’s worked better for you since the time you first started using a device? 

Jordyn Zimmerman 09:44 

I started using iPad at 18, almost 19 years old, but the apps have changed and they continue  changing. There are so many apps available and so many tools available, really allowing people  to choose what will be most effective for them. 

Clare 10:02 

So Jordyn, you shared that. For most of your life, there was an assumption that you didn’t have  a voice, you didn’t have a message, right? That there weren’t things that you wanted to say,  because you weren’t given the tools to express yourself. There are so many misconceptions  about people who are nonspeaking, people who use AAC. There are misconceptions that they  aren’t intellectually capable. There are misconceptions that people don’t have the potential to  work and to live independently. And I’m hoping we can talk a little bit more about what those  misconceptions are, and how those misconceptions directly impact the lives of those people.

Jordyn Zimmerman 10:58 

Yeah, so there are a lot of biases people hold, which are both conscious and unconscious.  Some of those I’ve touched on as it relates to our words, and how much power those have.  People constantly use words when in conversations about people who cannot use speech to be  heard or understood. And these words include everything from calling us ‘complex’ to ‘low  functioning’. All of these words are really harmful, and they also don’t give much information  about the person. And they don’t just impact the lives of disabled folks, but they impact  everyone. Society is better when everyone is included. But then there are also things such as IQ  tests, which are not evidence-based for someone who cannot rely on speech to communicate,  yet folks believe these tests as valid and take the scores to heart. And then they are often used  to deny access to robust language based communication. I know for me, the assumptions  underlying my IQ score had such a negative impact on my education. Of course, there is  nothing shameful about a low IQ score. But folks continuously conveyed to me that I wasn’t  worthy, and that I wouldn’t be able to go to college or be meaningfully employed. So this  misconception was then used as a basis to continue denying me greater access. And we really  just shouldn’t be making these automatic assumptions. But it all circles back to the biases that  folks hold. And again, just circling back to the question before about speech and language, it’s  impossible to give someone a test like this and gain a valid result unless a person has been  given appropriate communication tools and supports to actually participate the best they can. 

Clare 12:39 

There are so many different layers of bias in testing measures. Right. But I think this is a topic  that I haven’t heard talked about as much. And I think it’s so important for people to be thinking  about, specifically how the implications of, as you said, measuring someone’s IQ when they are  not being fairly assessed in a way that works for them and that allows them to truly show their  knowledge level and express themselves fully. And I know that you’re really passionate about  addressing this issue of unfair and biased assessment….Uh, I’m going to give you a second to  add your thought here… 

Jordyn Zimmerman 13:28 

And it’s not that we just give a test, and that’s the end. We use this invalid number to make  decisions about students in elementary school that forever impacts the trajectory of their life, the  services and supports they are offered and how folks allow them to be honored and community. 

Clare 13:46 

Such a great point it’s it’s a lifelong impact in most cases, right. So I’m hoping that you can  share some thoughts for people that are tuning in, some tips and takeaways. So I know that The  Nora Project is working intensively on bringing conversations to light, engaging communities in  conversations from – with children to educators and the larger community to really increase  awareness and conversation about disability inclusion and access. And I think that it takes all of  us, right, to be working together to break down stereotypes, think about what belonging really  means. So what are some top tips or ways that people can practice allyship thinking about you  know, with the nonspeaking community or people who use AAC and also just the larger  disability community in general? 

Jordyn Zimmerman 14:48 

First of all, awareness is not enough, especially when we are thinking about creating  communities of belonging. We need action and intentionality and we need to expect disability in  all spaces. All of which takes acceptance and more. However, in regards to nonspeaking, folks, 

I was recently on another podcast where I was asked a similar question. So I’ll share part of my  same response. 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. Another part of listening is that when you are holding unconscious biases, you  have to be really intentional about listening and interrogate the thoughts you might have both  about our ability to share and about how what we share might challenge what you believe.  Beyond this, we have to build communities that expect and honor the needs of everyone,  including those of us who use a variety of communication tools. I would also emphasize that  belonging is a feeling as a result of people being intentional in their actions. And it’s really an  individual feeling that is different for everyone. Our schools are the hubs of our communities. So  we need to ensure this understanding of actions which can transpire into people feeling a sense  of belonging throughout life begins early within our schools. This also requires ensuring  students receiving the services and supports they need to learn, communicate, and thrive. 

Clare 16:29 

Very well put, and I appreciate you bringing to light the fact that it is beyond awareness, we  need to be going beyond awareness and thinking about that keyword you mentioned  intentionality. And I also love how you’ve highlighted that the idea of belonging is different for  everyone. It means something different for everyone. So if we’re really going to create  environments where everyone feels they have a sense of belonging there has to be an  individualized and intentional approach to doing that. So thank you for being with me, Jordyn, I  really enjoyed our conversation. 

Jordyn Zimmerman 17:05 

Thank you for having me as a guest 

Clare 17:09 

Thank you to my guest Jordyn Zimmerman. Check out the links in the episode description to  learn more about Jordyn. Join us for our next episode coming this August. Until then, stay  connected with us at AspireChicago.com and rate, review and subscribe to Amplify Inclusion.  This episode was co-produced and engineered by Subframe Sound. This season is made  possible thanks to generous support from the Fred J. Brunner Foundation, Bernstein, The  Boutelle Family, Horton, LiventusINC, United Healthcare, and members of the Aspire  community.