Reviewed by Rachael A. Zubal-Ruggieri
As a Disability Studies scholar and purveyor of multiple forms of popular media, I was pleased to discover the publication of Beth A. Haller’s new text, Disabled People Transforming Media Culture for a More Inclusive World. This Open Access book is one of the latest in the “Routledge Research in Disability and Media Studies” series, edited by Australian Disability1 media scholar, Katie Ellis.
This book is one of many Haller has published on Disability and media throughout her long academic career; the current work focuses on Disabled individuals and collaborators who “have been influential in creating [or rather, by creating] modern mass media” (p. iii), analyzed using “a Disability Studies framework” (p. 13). The research for this book was conducted by interviewing several Disabled creators, in-person or via Zoom, and discussing numerous texts, both popular and academic.
At 245 pages, the text is densely packed with an introduction and seven chapters, including extensive citations for each chapter and a brief index. Haller begins the book with an introduction that shares her “…journey into disability media studies” (p. 1) and addresses how her career and life as a neurodiverse, chronically ill person, intersect. The next six chapters cover media types: scripting for film and television; reality television and TED Talks; podcasts, vlogs, and other similarly oriented platforms; on-demand, streaming television programming; art, comics, graphic memoirs, and music; and documentaries. The last chapter differs from its predecessors, shifting in orientation to focus on one Disability segment “that is most often forgotten in media representations…people with nonvisible disabilities/chronic illnesses” (p. 18).
Haller uses quotes, media examples, scholarly analyses, and more to skillfully demonstrate how Disabled creators and collaborators are transforming media and culture. The findings of each of these media analyses could be used to support and be applied to any other form of media, either shared in this book or as the subject of other research. The book’s approach as a whole reveals a united theme that is teased forth subtly. Strengths and weaknesses discussed in relation to one media form often apply to others; these commonalities bolster each other. For example, Haller quotes one scholar who shares how polio survivor and musician Ian Dury wrote about his disability: “…his body was his book, as he wrote autobiographical and observational lyrics about disability, and then performed those stories on stage” (p. 155). There are numerous other examples where Disabled creatives discuss experiences of their disabilities and embed these reflections in their work.
Another example is Chapter 5, in a discussion about graphic narratives and memoirs on mental illness:
The possibility of interrupting…contemporary ableist depictions of disability… [where] people with disabilities write about themselves and their lives…[is] a helpful corrective [sic] to mainstream and commercial representations…. [these] graphic memoirs depict the ableism at most levels of society (p. 146).
As I kept reading, thematic threads and “theoretical linkages” (p. 140) kept emerging. The subject of Chapter 5 demonstrates how some Disabled media have similarities and also share how many Disabled lives overlap. In another example, vlogs can be created within then easily be shared via social media platforms such as WhatsApp and Instagram. Such intermixing is indeed a form of interdependence—not an unknown concept in Disability communities—which Haller remarks upon:
People who embrace a disabled identity know…interdependence and collaboration [are] needed [and essential] for most aspects of life…[and are] essential in the creation of television and film [or any media] (p. 28)
The “fight against societal ableism and oppression” is something that should unify all Disabled people (p. 194).
More than once, media studied in this text are referred to as disruptive, contentious, liberating, confrontational, innovative, resonant, authentic, empowering, educational, and more. But couldn’t all media work “…in ways that resist dominant [ableist] disability narratives, allowing for expanded ideas of what disability is and who persons with disability [sic] are” (p. 104)? Such media exposure can certainly support “cultural accessibility” (p. 121).
I appreciate how Haller repeatedly underscores these threads of commonality between different individuals, then weaves them and makes interconnections, pulling the reader into multiple directions with a similar destination and conclusion. The ideas and media actually are a mixture, and among this intermixing are different media types that are interdependent on others, including divergent, less than mainstream formats and previously under-researched (and rapidly emerging) domains.
At the same time, interdependence within Disability circles alone is not always the sole method of media creation. Producing content often means working with nondisabled allies and collaborators, especially if media is intended to be mainstream. But with or without such interactive structures, Disabled individuals are increasingly using new and emerging media to take control, telling their own stories. Haller points out creatives who produce new media, asserting Disabled people must be involved at all levels so representation can improve, especially so Disabled children and teens can see possibilities for their own futures (p. 12).
I highlighted numerous passages while reading, and made many comments to myself about the content, ranging from situations and creators that remain underexplored to phrases that might have been clarified or expanded upon. I admire how Haller interweaves the creators’ perspectives with language, theoretical terms, and concepts in ways that most audiences could likely understand, even if there is some inconsistency in how some terms and concepts are explained, or rather not explained.
For example, two interrelated and nuanced phrases often used when discussing media are inspiration porn and supercrips. Inspiration porn is mentioned more than a few times, but is not completely explained. There is mention of a “‘Supercrip’ approach [sic]” more than once, but this is not fully defined. However, there are other academic Disability Studies theories that are clarified, including Mitchell and Snyder’s concept of narrative prosthesis which is part of the first chapter’s title, starting on p. 7, and cited elsewhere several times. McRuer’s conceptualization of compulsory able-bodiedness (p. 77) is also explained.
The last chapter, “Becoming visible people with nonvisible disabilities crafting media content,” discusses how “[t]he world of disability representation in media is typically presented as a disabled/nondisabled binary but that excludes millions of people with nonvisible disabilities and chronic illnesses” (p. 193, emphasis added). In the preamble, Haller identifies herself as a neurodiverse individual with invisible illnesses, so perhaps this subject resonates with her more than others covered in this research. Representations of and content by creators with chronic illnesses and invisible Disabilities are distinct from other Disability media forms. Dominant representations often demonstrate how many chronically ill and invisibly Disabled people do not appear sick (or not “sick enough”) or “truly“ Disabled, and often face accusations that they are faking their illnesses or Disabilities (or using disability as a plot device to denote deceit). People with invisible Disabilities sometimes pass as able-bodied, and more often than not:
Nondisabled people [have] defined disability by tools such as wheelchairs, white canes, or hearing aids, and the disability community has defined disability by visible barriers to accessibility such as stairs or lack of ramps or braille (Montgomery, cited on p. 194).
Intertwined with this discussion of invisible disabilities and chronic illnesses are representations of mental health in media which has “radically changed the representation of people with mental health disabilities” (p. 206). There are still more representation—and stories—to be shared.
Perhaps one area of this book that could be strengthened is more acknowledgment of white privilege in Disability media. In chapter 5, on comics and graphic narratives, I became distressed when I discovered that not one of the graphic memoirs discussed in this chapter is written by a Disabled BIPOC person. Haller does share examples, citing media by or interviews with Disabled BIPOC creatives who themselves declare such privilege is a concern.
As I was finishing this review, an online article appeared in my inbox, “Rewriting The Script On Disability Representation.” Written by a Forbes magazine contributor, Caroline Casey, the article discusses branding and advertising, forms of media that Haller does not address explicitly in her book. In alignment with Haller, Casey wonders, “Is the world of business finally waking up to a powerful truth? Authentic disability representation is a game-changer for innovation, brand loyalty, and the bottom line.”
Casey and Haller both emphasize that while there has been progress, there is still more to be done, especially as Disabled people want to be continuously involved in how they should be perceived. Casey asserts that “…real change demands acknowledgement that the most powerful catalysts for change come from within the disability community.”
This particular book, and Haller’s lifework, have involved much more than analyzing inclusiveness in media. Such important research disrupts the dominant ableist-gaze that permeates and persists throughout all media today.
Future creators and scholars, Disabled and nondisabled, should understand and anticipate that change is necessary as both media and Disability identities are fluid. New media is continuously created. People can become Disabled, and may claim a Disabled identity, at different moments in their lives; these identities are intersectional and diverse.
In the preamble, Haller shares that this book is “[f]or all the disabled, chronically ill, or Deaf media creators worldwide.” She continues, “what you are doing today will make the future accessible” (Haller, p. vii; italics in original). Haller shares how she “often found many more examples from disabled media creators than I could ever use” (p. 19). Haller had to make choices, ones that most adequately supported the overall theme of the book.
I appreciate the analyses and content that Haller included in the book with respect to Disabled media creators and collaborators whose work is timely, historical, interrelated, and unique. I remain hopeful for more to come—with a particular emphasis on the work of Disabled BIPOC media creators as well as those who hold other multiply marginalized identities and live with the complexities of myriad axes of difference.
Title: Disabled People Transforming Media Culture for a More Inclusive World
Author: Beth A. Haller
Publisher: Routledge
Date: 2024
Note: This book is available via Open Access through the Taylor & Francis website.
Note:
- A word about language: I capitalize certain words and identities, as reclamation for the purposes of political and cultural identification.
Read Rachael’s review of Season One: Iris and the Crew Tear Through Space!; their essay, “How X-Men’s Beast is My Kindred Spirit, or How I Really Need to Reclaim Blue”; two of their Micro Mutant Postcard poems; and the Gatherer’s Blog in this issue of Wordgathering.
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About the Reviewer
Rachael A. Zubal-Ruggieri (she/her/hers, they/them/theirs) is a long-time employee at Syracuse University. She co-created (with Diane R. Wiener) “Cripping” the Comic Con, the first of its kind interdisciplinary and international symposium on disability and popular culture, previously held at SU. At conferences and as a guest lecturer for many years, Rachael has presented on the X-Men comic books, popular culture, and disability rights and identities from her perspective as a Neurodivergent person and as a Mad Queer Crip. Entries in their “Micro Mutant Postcard Project” have been published in Wordgathering: A Journal of Disability Poetry and Literature and Stone of Madness. Their most recent publications include two articles (co-authored with Diane R. Wiener) in the Journal of Literary & Cultural Disability Studies‘ Special Issue, “Cripping Graphic Medicine I: Negotiating Empathy and the Lived Experiences of Disability in and through Comics” (Volume 17, Issue 3).