By August Butler
“Just because you can’t see my disability doesn’t mean it’s not there. It’s part of my identity.”
Disabled people are often invisible. That’s not to say we’re not looked at— any visibly disabled person likely receives an unhealthy dose of awkward gawking and befuddled stares like a child marveling in discomfort at a particularly unsettling rodeo clown— but we’re seldom truly seen. In all its misrepresentation, hidden history, and vast diversity as a minority group, disability is rarely viewed as a legitimate identity. Able-bodied people, especially the traditional “experts” in control of disability research, provide astonishingly little validation and patience for the disabled, viewing us as a topic instead of a real population. They don’t really listen. By refusing to acknowledge the lived experiences of people with disabilities, we’re taken out of the equation in documentation of disability. With the uprising of autonomy surrounding our representation, slogans like “Nothing about us without us” began circulating in the disability community decades ago as a call to action. Activists today are still fighting to incorporate this message into scientific research about disability. Hannah Lichtenstein, a neuroscientist with many deep connections to the disability community, is advocating for self-determination in disability research from inside the belly of the beast. Her documentary Unlocking Understanding: The Diversity of Expertise in Neurological Disability is a testament to the true worth of disabled voices in science.
I had the privilege of sitting down with Hannah for an hour of ranting and raving, covering everything from the nuanced complexities of identity to just how cool interdisciplinary creativity is. Hannah is a neuroscience PhD student and the creative assistant for the Brains & Behavior program at Georgia State University. Georgia State’s website describes Brains & Behavior as “a transdisciplinary program that promotes research collaborations and dialog” through lectures, fellowships, workshops, and seed grant opportunities to fund research in neuroscience. “I’m a neuroscientist and artist,” Hannah explained, “and my career goals center around informal stem education and creating more accessible avenues for science communication through exciting and creative mediums. That’s, like, straight off my Linkedin.” Her role in the program is perfectly suited to help her utilize her skills and passions.
Every year, Brains & Behavior hosts a one-day retreat featuring lectures and a poster session displaying the transdisciplinary research that the program encourages. In brainstorming for the conference, Hannah began looking into interdisciplinary formats of presenting neuroscience beyond the technical, cookie-cutter, precisely scientific method that’s common in scholarly settings. “I wanted to think of creative ways that people can communicate science outside of poster presentations or research talk,” Hannah explained. “Those things are very cool, but also not the most accessible ways to understand science, because you run into language barriers… aside from just English in general, in a lot of the jargon that comes with scientific literature.” As Hannah is both an artist and scientist, combining the two fields in a perfect package of expression and understanding was an exciting way to achieve that goal of digestible, engaging, and meaningful deliverables of scientific documentation. She noted that she’s “always been interested in how we can use art or a more creative medium to communicate scientific findings.” Though Hannah isn’t a filmmaker herself, she’s contributed to a few film centered projects, and was surrounded by passion for the field as an undergraduate. “I don’t know anything about cameras,” she explained, “but I have a vision.” She went to her supervisor Elizabeth (Liz) Weaver, the Associate Director of the Brains & Behavior program, and pitched the foundations of an idea for a film.
That idea, of course, would later grow. In December 2022, they found the Peggy Girshman Idea Grant, which provides seed funding for projects created by science writers and interdisciplinary researchers. Elizabeth would go on to win it, establishing the Atlanta chapter of NeuWrite, whose “mission is to elevate neuroscience knowledge by accurately communicating content across multiple media platforms… while fostering collaboration between neuroscientists and writers to improve the science communication skills of its individual members.” NeuWrite itself is an organization designed to connect scientists and artists to create interdisciplinary projects and “develop novel strategies for communicating science to general audiences.” Which, as luck would have it, is exactly Hannah’s goal as well.
The Neuwrite Graphic
She explained that “the whole point of our grant is to provide materials and learning opportunities for science writers to better understand the complexity of reporting on neurological disability. A lot of the time, when you’re reading an article, you’ll get quotes from researchers, doctors, people in the CDC… but you’re not really getting quotes from the actual people that have the disability. You’re losing so much of the story.” Through NeuWrite, Elizabeth started a course in science writing to teach and encourage collaboration between the subject and writer in research that’s focused on neuroscience and human behavior. Rather than solely referencing scientific data and second-hand perspectives of disability, they aim to gain knowledge by understanding the lived experiences of the individual and working with them as equals— not as specimen and observer. Hannah’s documentary was established as a subset of NeuWrite’s Atlanta Chapter, the “NeuWrite Voices Project: Democratizing Neuroscience Communication.” The documentary is an educational resource for both participants of the course and science writers in general. It’s set to be shown in the NeuWrite course on January 23, 2024, and will be used as a tool by The National Association of Science Writers as an example of why equality and collaboration are so important in neuroscience.
The documentary is a collection of interviews, all focusing on the perspective and experiences of disabled people. “The documentary is theoretically the first episode of a series— if we get funding, that’s the asterisks there… while I could be doing this for free because it’s very cool, it’s a lot of work,” Hannah explained, noting that her team of contributors definitely need to get paid for all their labor to help the project live up to its incredible potential. “But right now we have this funding, which is awesome, and we’re hoping to turn this into a series where we can investigate more specific issues in the mega-topic of neurological disability. This first episode— so it’s like a docuseries, but I’m referring to it as a documentary just because that’s what we have— is about interviewing very different types of neurological disability.”
Three interviewees were chosen from a group of about twenty-five volunteers, each with distinctly different disabilities, but with one common thread. Hannah explained that “the three people that we did interview, they actually all turned out to have mostly invisible disabilities.” Each individual story is unique, but all delve into limitations in work and study that can be a result of disability. One participant with epilepsy is a fellow neuroscience student who “used to be in the medical field, and that was just very high stress, and stress is a trigger for epilepsy.” Another participant “had a spontaneous cerebrospinal fluid leak… she’s faced a lot of difficulties just navigating that. Like pressure, flying in an airplane is painful. Because she works in film production, she’s been limited in her work due to the fact that she can’t travel.”
The tricky part of representing and empathizing with invisible disabilities is understanding that the indicators of contentedness common for able-bodied people don’t typically apply to the disabled. There are also many layers of complexity to the disability identity and the act of expressing it. “There are things that you face when you come out with an identity,” Hannah notes, in reference to an interviewee who had talked about the struggle she’d faced at work due to her disability identity. “Regardless of if it’s implicit or explicit, people do treat you differently.” The issue of misunderstanding, whether that’s because a person’s disability is unseen or very seen, is the common thread of these testimonials. Hannah explained this issue using words that most people with invisible disabilities want to shout at the top of our lungs, “even though I look okay, I’m really not okay. Just because I seem fine doesn’t mean I’m not in immense pain every day. Just because you can’t see my disability doesn’t mean it’s not there. It’s part of my identity.”
“It’s important to amplify disabled voices, but also to see disabled people as people, not just as voices.”
Hannah noted that she noticed “this pattern of people getting involved with advocacy and the community when they’re diagnosed later in life… they had to learn ways to cope without really knowing what was going on.” For disabled people, the realization that we can claim an identity and community, even with our limitations, struggles, and constantly being misunderstood is life changing. When disabled people are left out of the research process, those key elements of identity, community, and lived experience are left out as well. Hannah explained that because there’s so much misunderstanding and misrepresentation within neurological and invisible disabilities, “it’s really important for [disabled] people to be involved in research about their condition because it’s so perceptual. It’s not the kind of thing you can really get from just studying it, so it’s really important that they can be driving the research.”
The documentary will include all of these first hand accounts of being disabled, a medical perspective from a physical therapist specializing in chronic pain, and an academic research perspective from a professor of disability studies. In combining every bit of intel, Hannah and her team will “have all these stories that will be weaved together to point out how much information and expertise really does come from the people that are disabled… it’s really important to hear what people have to say, don’t speak for them but give them a platform to say what they’ve already been saying.”
While laying out the format of the documentary, Hannah explained that her team was “going back and forth between ‘do we want someone narrating this documentary?’ or ‘do we just want clips of the interviews?’ and we ended up with just the interviews, because at the end of the day it doesn’t need narration. Here’s what these people are saying and this is the way that they’re saying it.” Though she hadn’t had much film experience in the past, she explained the importance of documenting these interviews visually. “This concept works well as a podcast,” she said, “but I think the visual is really important. It’s important to amplify disabled voices, but also to see disabled people as people, not just as voices. These are people living life every day, whether they have an invisible disability and people are like, ‘well, you look fine,’ or they have a visible disability and they’re instantly stigmatized upon being seen. There’s really important conversations that go along with the image of somebody and what they’re saying.” Because disability experiences intersect so greatly, they found no reason to lay out the themes of the film using third party narration. “The documentary is going to be spliced together in a way where we’re going through their stories but mostly focusing on the shared experience… yes, there are specific issues that impact these specific people, but overall, the experience of having a neurological disability is so relatable for those people.”
Just from what I’d heard up to that point, I knew Hannah was right. These experiences are relatable. The feeling of being simultaneously isolated and misunderstood for your disability while still finding a sense of connection with other disabled people through shared experiences is basically universal. But still, there hasn’t really been a strong community formed that includes and represents all disabled people, especially not those with invisible disabilities like mine or Hannah’s interviewees, and definitely not people with disabilities who work in disability research through the arts and sciences. When I expressed this thought to Hannah, she immediately agreed with “yeah, that’s actually what I was noticing at Georgia State on campus… everyone’s doing this in their own small way.” Though there’s a decent amount of resources for disability and neuroscience research, “there isn’t very much cross-collaboration in these groups or building a greater community where everyone can come together from these small projects and discuss the communal feeling of living with neurological disability.” Even though these themes and connections are relatable, each lived experience is so unique that it can be difficult to unify a large group of disabled creatives and academics over one shared identity. There isn’t an exact quality that unites us all in one distinct category. Hannah mentioned that one of her interviewees expressed disconnection from the label of disabled entirely, paraphrasing him as saying “I don’t see this as a disability. I’ve had this my whole life. I’m just different, and it’s only a disability in the context of the ableist world.” I immediately chimed in with “the social model,” and like most disability activists would, Hannah replied with a simple “yeah, of course.”
The documentary flier
During my brief introduction to Hannah and her project before our chat, she’d mentioned in passing that the response to her invitation to participate as an interviewee was a happy surprise. “I didn’t know how this was gonna go. I posted [the documentary flier] on my Linkedin, we posted it on some FaceBook groups. Then Liz started getting people interested in the course. Liz is very connected to the neurological disability community in Atlanta… she’s a huge advocate online. She passed along the documentary flier to those groups of the people she’d been posting to for the course, and when that happened there was this huge influx of people who were like, ‘this just sounds like a really cool project and I really want to participate.’ We got a nine-year-old who responded… we can’t film minors, it’s too complicated, unfortunately… but it was so sweet. She was like, ‘I have autism and people think I’m different, but I just want to share my experience.’ And I just want these people to be able to share what they have to say, but there isn’t time to interview twenty-five people.”
As for Hannah’s personal motivation to create the documentary, she expressed that she’s “very closely intertwined with the neurological disability community.” Her passion for neuroscience, the arts, and storytelling was ignited by the simple act of noticing variations in human behavior as a kid, and having curiosity when approaching those differences. “My aunt has Down Syndrome, and when I was a kid, I didn’t notice it at all,” she explained. “My mom explained to me, ‘do you ever wonder why she lives with Grammy, why she doesn’t live on her own? It’s because she has Down Syndrome.’ The only thing I could think was like, how does that make her different? Why is she different just because of Down Syndrome? And that sparked my interest in neuroscience for the rest of my life.”
Hannah’s involvement in the disability community mainly centers around neuro-developmental disabilities, such as Down Syndrome or autism. She was part of Best Buddies from middle school through college, an organization which defines itself as “dedicated to ending the social, physical and economic isolation of the 200 million people with intellectual and developmental disabilities.” They do so by creating a community with an integrated mix of both disabled and non-disabled people, giving the disabled a space to advocate for themselves and have their personal and social needs met in an open-minded, dependable way. Hannah spoke highly of the organization, describing it as a setting that “provides a place for people in the community to be matched with people with disabilities among their age group and form friendships that are real… you build this greater community, and it’s just very positive.” Hannah explained that “I got to grad school, and for my whole first year I was like, ‘I don’t know how to bring this back into my life.’ I’m very busy now… and I’m still very passionate about this. So when the opportunity arose, when we got this grant, it was fantastic. I was like, ‘great, this is my in, back into this community that I care so much about.’ So I hope people want to fund a project like this.”
“What I really want to do is get people talking.”
Hannah has an abundance of hopes and plans for the future of this project. “Our current plan is taking this, using the name ‘Unlocking Understanding,’ and having panel sessions where people with disabilities speak to a room of researchers,” she explained. “Then researchers are able to ask questions and listen to these people share their lived experience to create more understanding— y’know, ‘Unlocking Understanding’— about what it really is to have a disability… what I really want to do is get people talking.” She’s also interested in dissecting the contradictions and barriers in many established systems surrounding disability, noting that “a future thing I’d want to focus on would be ADHD. I think ADHD is a perfect example of miscommunication between the medical field and people with ADHD. Because what happens when you need to get an ADHD diagnosis? They’re like, ‘here are steps one through ten, complete them.’ And it’s like, ‘well, that’s actually the whole reason I’m getting the diagnosis.’” That got a decent laugh out of me— the process of getting an autism diagnosis is similar. What happens when you need to get an autism diagnosis? They’re like, ‘sit in this room with a stranger one-on-one and talk about things that make you uncomfortable for hours.’ And yeah, that’s the whole reason I got the diagnosis. Hannah explained the big conundrum with diagnosis of neurodivergency, which is that “the requirement for getting the diagnosis in the first place is already an obstacle. That’s a perfect example of a specific topic I want to investigate. I’m sure so many people these days relate to that.” She definitely wasn’t wrong.
Within the production team, Hannah is the project lead, handling the majority of the process. Tali Baptiste is the videographer, or as Hannah described her, “the camera, audio, making things look aesthetically pleasing girl… Tali is the mastermind behind the camera.” During the preparation stages, the two collaborated heavily on preliminary steps, such as developing interview questions and surveys. Hannah explained that “Tali is a senior in the GSU Film department working towards a career in documentary film making.” Tali’s skills were crucial to translating Hannah’s expertise in neuroscience to film and “creating an impactful story from these different interviews… [we] were able to combine [our] different skills to create and impactful and important film… I really could not do this without her.” Hannah and Tali’s collaboration is a beautiful example of how harmonious the intersection between science and art can be. “But at the end of the day,” Hannah said, “[Tali] is like ‘this is your project and I’m your videographer, and I will give you my input on anything and everything that you want, but you’re the project lead.’” Hannah spearheaded the project, but Tali was with her every step of the way, providing invaluable knowledge on the art of film and supporting Hannah’s vast ambitions.
Hannah also mentioned that CETLOE, the Center for Excellence in Teaching, Learning, and Online Education at Georgia State is helping with some animation and final editing, “just so we’re crediting everyone involved.”
“We’re here to hear your lived experience and your story, so there’s no right or wrong answer in what you’re saying.”
Tali Baptiste and an interviewee, Monique Hopgood-Willis, on set
Tali and Hannah worked together during the filming of the documentary as well, though Hannah took the lead on interviewing the participants. “During the interview process, we’d set up our equipment, etcetera… I would ask them questions and be like, ‘you can answer this question, and if it turns into a whole other story, that’s fine.’ We always finished in three hours.” While listening to Hannah talk about the process of interviewing her participants, my curiosity got the best of me. It’s common for people raised within the margins of “average” to feel uncomfortable around people with disabilities, especially if their disability surfaces in behavioral or physical traits. Hannah had explained that one of her interviewees was autistic and schizophrenic, two neurological disabilities I’m well acquainted with, which are both misunderstood severely. Schizophrenia has taken on this perception as a hostile and aggressive illness, likely due to inaccurate media representation, and autism is usually seen as straight up weird. I’ve been told I seem off-putting or unfriendly many times, mainly due to my inability to consciously regulate my tone, facial expression, and bodily position— and talking to someone who’s hunched, glaring, frowning, and sounds irritated often trips the alarms of discomfort in neurotypical brains, even if it’s completely unintentional. So I asked Hannah if she felt any of that discomfort, just out of curiosity. Her answer was “well, I’m neurodivergent.”
That answer alone is such a perfect example of why more disabled people should be involved in research surrounding disability, both in providing information and conducting the research itself. The bias that able-bodied people typically have toward disabled people often appears in traditional research. Because that traditional research impacts rhetoric and perception, the bias just spirals in this infuriating snowball effect. But Hannah could likely relate to the experiences of her participants, making her intake more accurate to what the individual was really saying. “I didn’t feel any discomfort, because this community is so personal to me… like, I loved being in Best Buddies because I loved talking to these people. There’s no judgment based on social norms, it’s just hanging out and talking and being yourself. So when I conducted interviews, I felt like, if anything, there was maybe some hesitancy on their side to know if it was a safe space. I just really tried to make it safe as much as I could. There were some breaks that needed to happen during some interviews because things got emotional, and we had some really great conversations off camera to talk through those emotions. The thing I emphasized the most during the interviews was that we’re here to hear your lived experience and your story, so there’s no right or wrong answer in what you’re saying.”
“People with neurological disabilities hold expertise that cannot be replaced.”
Accepting both the eclectic, individualistic nature of living with a disability while simultaneously detailing how unifying the commonalities of disabled life are is a difficult enough endeavor as is. To then add the task of highlighting the incalculably large need for disabled people to have a say in how we’re discussed, something activists and disability theorists have been trying to do for decades, seems near impossible. But Hannah is trying. Honestly, though I’ve lost hope in the past, I think it’s people like Hannah, artists and scientists and creatives who are passionate about changing what isn’t right, who are really going to succeed. Hannah’s goal is to “show that people with neurological disabilities hold expertise that cannot be replaced. The most important thing is to show that these people have merit, and that their experiences are real. You can’t invalidate somebody’s experience because it doesn’t match your diagnostic criteria. It’s like telling someone ‘oh, you can’t feel that way.’ Well, that’s what I’m feeling, so you can’t tell me I don’t. I hope that doctors and researchers see this and realize that they should ask their patients more questions and find a way to connect with the clinical population that they research. What are you doing it for if it’s not for the greater community? For journalists, the goal is to show them that you have to interview people with the disability that you’re reporting on. You’re missing the whole focus of the story if you’re just talking to doctors and experts… it’s kind of the traditional versus nontraditional sources of expertise. For viewers that have disability, I hope that they feel validated by seeing this kind of thing, and for people without disabilities I hope they realize that… disability is different for everyone. But at the same time, there’s this shared experience of just having a disability in general that is very uniting.”
“What are you doing it for if it’s not for the greater community?”
Coming into this interview, I wanted to know why Hannah was taking it all on. Through all of her stories, her personal motivations, her observations, criticisms, research, knowledge, and vast appreciation for neuroscience, I think I now know why— it’s because no progress will be made if nobody tries. It’s an incredibly brave thing to notice something that needs to change and take initiative in changing it. I have every certainty that we’re going to succeed in this goal because of people like Hannah, people who make projects like this, who strengthen the courage, determination, and hope of the disabled community through their art. I’m anxiously waiting for what comes next in “Unlocking Understanding.”
Read about the Peggy Girshman Idea Grant and NeuWrite Atlanta Chapter here: https://www.nasw.org/article/nasw-science-writers-2023-idea-grants-awardees-childrens-podcast-mentoring-academy-neuwrite
Find Hannah on Linkedin: https://www.linkedin.com/in/hannahlichtensteinneuro/
Images provided by Hannah Lichtenstein
Cover art by August Butler
References
“Best Buddies.” Best Buddies International, 19 July 2023, www.bestbuddies.org/. Accessed 6 Nov. 2023.
“Brains & Behavior – Neuroscience at Georgia State.” Neuroscience, neuroscience.gsu.edu/brains-behavior/. Accessed 8 Nov. 2023.
Carey, Allison C. “On The Margins of Citizenship.” Beginning With Disability, 2018, p. 99. Neuwrite, www.neuwrite.org/. Accessed 6 Nov. 2023.
“Center for Excellence in Teaching, Learning and Online Education.” CETLOE, Georgia State University, cetl.gsu.edu/. Accessed 9 Nov. 2023.
“NASW Announces 2023 IDEA Grant Recipients.” ScienceWriters (Www.NASW.Org), www.nasw.org/article/nasw-science-writers-2023-idea-grants-awardees-childrens-podcast-mentoring-academy-neuwrite. Accessed 8 Nov. 2023.
Neuwrite, www.neuwrite.org/. Accessed 8 Nov. 2023.
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