July 11, 2023
Amplify Inclusion Podcast
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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