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In Disability Worlds (Duke UP, 2024), Faye Ginsburg and Rayna Rapp chronicle and theorize two decades of immersion in New York City’s wide-ranging disability worlds as parents, activists, anthropologists, and disability studies scholars. They situate their disabled children’s lives among the experiences of advocates, families, experts, activists, and artists in larger struggles for recognition and rights. Disability consciousness, they show, emerges in everyday politics, practices, and frictions. Chapters consider dilemmas of genetic testing and neuroscientific research, reimagining kinship and community, the challenges of “special education,” and the perils of transitioning from high school. They also highlight the vitality of neurodiversity activism, disability arts, politics, and public culture.
Disability Worlds reflects the authors’ anthropological commitments to recognizing the significance of this fundamental form of human difference. Ginsburg and Rapp’s conversations with diverse New Yorkers reveal the bureaucratic constraints and paradoxes established in response to the disability rights movement, as well as the remarkable creativity of disabled people and their allies who are opening pathways into both disability justice and disability futures.
A transcript of this discussion is available here.
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What does an inclusive society look like? And what are the challenges and opportunities when the society in question, Timor-Leste, is one of the most resource-constrained in Southeast Asia? My guest today is interested in these questions of inclusion and participation, and argues that people with a disability are a key component of a truly inclusive society – and that employment can be a key policy lever for inclusion. With Timor-Leste recently ratifying the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), now is the time, she says, for building an evidence base for employment as a foundational right that has transformational potential not only for people with disability but for the broader community.
Dr Kim Bulkeley from the Faculty of Medicine and Health joins Dr Natali Pearson to share the work she is doing ion disability and work in Timor-Leste. Dr Kim Bulkeley is a Co-head of the WHO Collaborating Centre for strengthening rehabilitation capacity in health systems, senior lecturer in the Sydney School of Health Sciences and a stream leader in the Centre for Disability Research and Policy.
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During the COVID pandemic, billions of dollars in relief aid was sent out to help us ride out the storm, although many people who struggled through it might scratch their heads at such a number, having seen little of it make any concrete impact in their own lives. This discrepancy is indicative of the underlying problem with the contemporary care economy, a series of federal and state programs, healthcare facilities and NGO’s, all trying to bend the needs of those under their care to the mechanisms and incentives laid out by capitalism. The result is a massive apparatus that regularly fails to fulfill its supposed intentions, leaving workers and those in need of help in precarious and often dangerous situations.
This apparatus is untangled and explained in clear detail by Premilla Nadasen in her book Care: The Highest Stage of Capitalism (Haymarket Books, 2023). Informed by both her work as a historian and as a political activist, she manages to untangle and explain why the massive apparatus regularly fails to fulfill its purpose. She also outlines offramps, forms of resistance that workers and activists have taken to develop alternative anticapitalist forms of care that might someday allow us to truly flourish together.
Premilla Nadasen is a professor of history at Barnard College, Columbia University. She is the co-director of the Barnard Center for Research on Women. She is also the author of Welfare Warriors: The Welfare Rights Movement in the United States and Household Workers Unite: The Untold Story of African American Women Who Built a Movement.
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A powerful analysis and call to action that reveals disability as one of the defining features of environmental devastation and resistance.
Deep below the ground in Tucson, Arizona, lies an aquifer forever altered by the detritus of a postwar Superfund site. Disabled Ecologies: Lessons from a Wounded Desert (U California Press, 2024) tells the story of this contamination and its ripple effects through the largely Mexican American community living above. Drawing on her own complex relationship to this long-ago injured landscape, Sunaura Taylor takes us with her to follow the site's disabled ecology—the networks of disability, both human and wild, that are created when ecosystems are corrupted and profoundly altered.
What Taylor finds is a story of entanglements that reach far beyond the Sonoran Desert. These stories tell of debilitating and sometimes life-ending injuries, but they also map out alternative modes of connection, solidarity, and resistance—an environmentalism of the injured. An original and deeply personal reflection on what disability means in an era of increasing multispecies disablement, Disabled Ecologies is a powerful call to reflect on the kinds of care, treatment, and assistance this age of disability requires.
A full transcript of the interview is available for accessibility.
Sunaura Taylor is an Assistant Professor in the Division of Society and Environment at the University of California, Berkeley. Taylor is a scholar and artist who works at the intersection of disability studies, environmental humanities, animal studies, environmental justice, feminist science studies, and art practice.
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In Crip Colony: Mestizaje, US Imperialism, and the Queer Politics of Disability in the Philippines (Duke UP, 2023), Sony Coráñez Bolton examines the racial politics of disability, mestizaje, and sexuality in the Philippines. Drawing on literature, poetry, colonial records, political essays, travel narratives, and visual culture, Coráñez Bolton traces how disability politics colluded with notions of Philippine mestizaje. He demonstrates that Filipino mestizo writers in the late nineteenth and early twentieth centuries used mestizaje as a racial ideology of ability that marked Indigenous inhabitants of the Philippines as lacking in civilization and in need of uplift and rehabilitation. Heteronormative, able-bodied, and able-minded mixed-race Filipinos offered a model and path for assimilation into the US empire. In this way, mestizaje allowed for supposedly superior mixed-race subjects to govern the archipelago in collusion with American imperialism. By bringing disability studies together with studies of colonialism and queer-of-color critique, Coráñez Bolton extends theorizations of mestizaje beyond the United States and Latin America while considering how Filipinx and Filipinx American thought fundamentally enhances understandings of the colonial body and the racial histories of disability.
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Measurements, and their manipulation, have been underestimated as crucial historical forces motivating and guiding the way we think about disability.
Using measurement technology as a lens, and examining in particular the measurement of hearing and breathing, Coreen McGuire's book Measuring Difference, Numbering Normal: Setting the Standards for Disability in the Interwar Period (Manchester UP, 2020) draws together several existing discussions on disability, phenomenology, healthcare, medical practice, big data, embodiment, and emerging medical and scientific technologies around the turn of the twentieth century. These are popular topics of scholarly attention but have not, until now, been considered as interconnected topics within a single book. As such, this work connects several important, and usually separate academic subject areas and historical specialisms. The standards embedded in instrumentation created strict, but, ultimately arbitrary thresholds of what is categorised as normal and abnormal. Considering these standards from a long historical perspective reveals how these dividing lines shifted when pushed.
This book is available open access here.
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In Crip Spacetime: Access, Failure, and Accountability in Academic Life (Duke University Press, 2024), Margaret Price intervenes in the competitive, productivity-focused realm of academia by sharing the everyday experiences of disabled academics. Drawing on more than three hundred interviews and survey responses, Price demonstrates that individual accommodations--the primary way universities address accessibility--actually impede access rather than enhance it. She argues that the pains and injustices encountered by academia's disabled workers result in their living and working in realities different from nondisabled colleagues: a unique experience of space, time, and being that Price theorizes as "crip spacetime." She explores how disability factors into the exclusionary practices found in universities, with multiply marginalized academics facing the greatest harms. Highlighting the knowledge that disabled academics already possess about how to achieve sustainable forms of access, Price boldly calls for the university to move away from individualized models of accommodation and toward a new system of collective accountability and care.
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Mimi Khúc is a PhD, writer, scholar, and teacher of things unwell. She is currently the Co-Editor of The Asian American Literary Review and an adjunct lecturer in Disability Studies at Georgetown University. Her work includes Open in Emergency, a hybrid book-arts project decolonizing Asian American mental health; the Asian American Tarot, a reimagined deck of tarot cards; and the Open in Emergency Initiative, an ongoing national project developing mental health arts programming with universities and community spaces.
Her new creative-critical, genre-bending book on mental health and a pedagogy of unwellness, dear elia: Letters from the Asian American Abyss (Duke University Press, 2024), is a journey into the depths of Asian American unwellness at the intersections of ableism, model minoritization, and the university, and an exploration of new approaches to building collective care.
Julia H. Lee is professor of Asian American Studies at the University of California, Irvine. She is the author of three books: Interracial Encounters: Reciprocal Representations in African and Asian American Literatures, 1896-1937 (New York University Press, 2011), Understanding Maxine Hong Kingston (University of South Carolina Press, 2018), and The Racial Railroad (New York University Press, 2022). With Professor Josephine Lee, she is co-editor of Asian American Literature in Transition, 1850-1930 (Cambridge University Press, 2021), a Choice Outstanding Academic Title for 2022. You can find her on Instagram @julia.x.lee.
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The use of disability as a metaphor is ubiquitous in popular culture – nowhere more so than in the myths, stereotypes and tropes around blindness. To be 'blind' has never referred solely to the inability to see. Instead blindness has been used as shorthand for, among other things, a lack of understanding, immorality, closeness to death, special insight or second sight. Although these 'meanings' attached to blindness were established as early as antiquity, readers, receivers and spectators into the present have been implicated in the stereotypes, which persist because audiences can be relied on to perpetuate them.
Marchella Ward's book Blindness and Spectatorship in Ancient and Modern Theatres: Towards New Ways of Looking and Looking Back (Cambridge UP, 2023) argues for a new way of seeing – and of understanding classical reception - by offering assemblage-thinking as an alternative to the presumed passivity of classical influence. And the theatre, which has been (incorrectly) assumed to be principally a visual medium, is the ideal space in which to investigate new ways of seeing.
Corinne Doria is a historian specializing in the social history of medicine. She is a lecturer at the Chinese University of Hong Kong in Shenzhen and teaches Disability Studies at Sciences-Po (Paris). Her work focuses on the history of ophthalmology and visual impairment in the West.
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Vulnerable narratives of fatherhood are few and far between; rarer still is an ethnography that delves into the practical and emotional realities of intensive caregiving. Grounded in the intimate everyday lives of men caring for children with major physical and intellectual disabilities, Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities (U California Press, 2021) undertakes an exploration of how men shape their identities in the context of caregiving. Anthropologist Aaron J. Jackson fuses ethnographic research and creative nonfiction to offer an evocative account of what is required for men to create habitable worlds and find some kind of “normal” when their circumstances are anything but. Combining stories from his fieldwork in North America with reflections on his own experience caring for his severely disabled son, Jackson argues that care has the potential to transform our understanding of who we are and how we relate to others.Aaron J. Jackson is a Lecturer in Anthropology at Victoria University. His research focuses on fatherhood, care, and disability.Alize Arıcan is a Postdoctoral Associate at Rutgers University's Center for Cultural Analysis. She is an anthropologist whose research focuses on urban renewal, futurity, care, and migration in Istanbul, Turkey. Her work has been featured in Current Anthropology, City & Society, Radical Housing Journal, and entanglements: experiments in multimodal ethnography.Learn more about your ad choices. Visit megaphone.fm/adchoices
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Matthew Rubery's book Reader’s Block: A History of Reading Differences (Stanford UP, 2022) explores the influence neurodivergence has on the ways individuals read. This alternative history of reading is one of the few books which tells the stories of "atypical" readers and the impact had on their lives by neurological conditions affecting their ability to make sense of the printed word: from dyslexia, hyperlexia, and alexia to synesthesia, hallucinations, and dementia. Rubery's focus on neurodiversity aims to transform our understanding of the very concept of reading. Drawing on personal testimonies gathered from literature, film, life writing, social media, medical case studies, and other sources to express how cognitive differences have shaped people's experiences both on and off the page, Rubery contends that there is no single activity known as reading. Instead, there are multiple ways of reading (and, for that matter, not reading) despite the ease with which we use the term. Pushing us to rethink what it means to read; Reader's Block moves toward an understanding of reading as a spectrum that is capacious enough to accommodate the full range of activities documented in this fascinating and highly original book.
Matthew Rubery is Professor of Modern Literature at Queen Mary University of London. His earlier books include The Novelty of Newspapers: Victorian Fiction after the Invention of the News (Oxford, 2009) and The Untold Story of the Talking Book (Harvard University Press, 2016). He has also edited or co-edited Audiobooks, Literature, and Sound Studies (Routledge, 2011), Secret Commissions: An Anthology of Victorian Investigative Journalism (Broadview, 2012), and Further Reading (Oxford, 2020). Currently, he is working on a history of “projected reading”, a form of assisted reading that involves projecting books on ceilings which a patient can read while lying in bed. This was first used to help World War 2 soldiers injured on duty who could not read conventionally. Matthew also likes to collaborate with charities and other organisations to think about ways of reading more suited to people with disabilities or neurodivergent readers.
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The history of the fashion industry has been well written as it relates to people who conform to certain physical norms and cultural stereotypes, whereas the inequality in access to the world of fashion has been largely ignored. Despite this lack of coverage, much work has taken place over the centuries to enable people who live with disability to participate in fashionable culture. This book tells that story via perspectives of notable historical figures, events and movements, and continues the discourse with a look at some of the contemporary developments in clothing and fashion.
The Intersection of Fashion and Disability: A Historical Analysis (Bloomsbury, 2023) by Dr. Kate Annett-Hitchcock takes the long view, from early attempts to conceal 'unsightly' bodies of royalty and nobility via creative innovation through growing contemporary awareness of inclusive fashion and how future work can be driven by technology and cultural acceptance.
This interview was conducted by Dr. Miranda Melcher whose forthcoming book focuses on post-conflict military integration, understanding treaty negotiation and implementation in civil war contexts, with qualitative analysis of the Angolan and Mozambican civil wars.
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People with disabilities are underrepresented in STEM fields, and all too often, they face isolation and ableism in academia. Uncharted: How Scientists Navigate Their Own Health, Research, and Experiences of Bias (Columbia UP, 2023) is a collection of powerful first-person stories by current and former scientists with disabilities or chronic conditions who have faced changes in their careers, including both successes and challenges, because of their health. It gives voice to common experiences that are frequently overlooked or left unspoken. These deeply personal accounts describe not only health challenges but also the joys, sorrows, humor, and wonder of science and scientists.
With a breadth of perspectives on being disabled or chronically ill, these stories highlight the intersectionality of minoritized identities with the disability community. Uncharted features essays by contributors who are d/Deaf, blind, neurodivergent, wheelchair users, have experienced traumatic brain injuries, have blood sugar disorders, have rare medical diagnoses, or have received psychiatric diagnoses, among many others. In many cases, the scientific field is not fully accessible to them, and they frankly describe struggling as well as thriving alongside their conditions.
Skylar Bayer is a marine ecologist and science communicator. Currently a marine habitat resource specialist in the NOAA Fisheries Alaska Regional Office, she received her Ph.D. from the University of Maine’s School of Marine Sciences for research on the sex lives of scallops and is a producer for the Story Collider.
Gabi Serrato Marks is a geochemist turned writer. She received her PhD in the MIT-WHOI Joint Program in Oceanography and is now a partner at the scientist-focused PR firm Stellate Communications. Her work has been published in Scientific American and Audubon and on the PBS Eons YouTube Channel
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For generations, Pauline scholars have responded in different ways to the Apostle’s “thorn in the flesh” (2 Cor. 12:7), our clearest indication that Paul was disabled—some with clinical diagnoses along biomedical lines, more with reticence and agnosticism as to the specifics of Paul’s disability, and others with doubts that Paul could have accomplished his apostolic work had he been physically impaired.
On this episode, Isaac T. Soon joined the New Books Network to discuss his paradigm-pushing study A Disabled Apostle: Impairment and Disability in the Letters of Paul (Oxford UP, 2023), a revision of his recent Durham Ph.D. dissertation with the same title, which employs the insights of disability studies and “biographical criticism” not simply to exegete Paul’s enigmatic “thorn in the flesh” but to reflect more broadly on the Apostle’s rhetoric of disability and impairment in its ancient context. Simultaneously, Soon contends that by an awareness of embodied language in Paul’s letters and concepts of bodily normativity contemporaneous to him, we can know three of Paul’s disabilities: (1) inhabitation by a demonic/malevolent force, (2) penile circumcision, and (3) short stature. Meticulously researched, methodologically grounded, and robustly argued, this study offers thought-provoking resources for adherents of Paul, students of the ancient world, and Neutestamentlers alike to consider the impact of Paul’s physical body on the message that he was compelled to share among the first-century Gentile world.
Isaac T. Soon (Ph.D., Durham University, 2021) is Assistant Professor of Religious Studies at Crandall University in Moncton, New Brunswick, Canada. Dr. Soon’s research focuses on the intersection of New Testament and early Christian texts with disability studies, including a current project on conceptions of bodily normativity and the portrayal of early Christian figures in ancient literature. Previous work of Isaac’s has been published in forums such as the Journal of Biblical Literature, New Testament Studies, Novum Testamentum, Vigiliae Christianae, the Journal for the Study of Judaism, Religions, Early Christianity, the Journal for the Study of the Pseudepigrapha, and the Journal for the Jesus Movement in its Jewish Setting.
Rob Heaton (Ph.D., University of Denver, 2019) hosts Biblical Studies conversations for New Books in Religion and teaches New Testament, Christian origins, and early Christianity at Anderson University in Indiana. He recently authored The Shepherd of Hermas as Scriptura Non Grata: From Popularity in Early Christianity to Exclusion from the New Testament Canon (Lexington Books, 2023). For more about Rob and his work, or to offer feedback related to this episode, please visit his website at https://www.robheaton.com.
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A transformative spiritual companion and deep dive into disability politics that reimagines disability in the Bible and contemporary culture.
"What's wrong with you?"
Scholar, activist, and rabbi Julia Watts Belser is all too familiar with this question. What's wrong isn't her wheelchair, though--it's exclusion, objectification, pity, and disdain.
Our attitudes about disability have such deep cultural roots that we almost forget their sources. But open the Bible and disability is everywhere. Moses believes his stutter renders him unable to answer God's call. Jacob's encounter with an angel leaves him changed not just spiritually but physically: he gains a limp. For centuries, these stories have been told and retold in ways that treat disability as a metaphor for spiritual incapacity or as a challenge to be overcome.
Through fresh and unexpected readings of the Bible, Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole (Beacon Press, 2023) instead paints a luminous portrait of what it means to be disabled and one of God's beloved. Belser delves deep into sacred literature, braiding the insights of disabled, feminist, Black, and queer thinkers with her own experiences as a queer disabled Jewish feminist. She talks back to biblical commentators who traffic in disability stigma and shame. What unfolds is a profound gift of disability wisdom, a radical act of spiritual imagination that can guide us all toward a powerful reckoning with each other and with our bodies.
Loving Our Own Bones invites readers to claim the power and promise of spiritual dissent, and to nourish their own souls through the revolutionary art of radical self-love.
Ilana Maymind is a lecturer at the Religious Studies Department at Chapman University.
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In rural northern Idaho in the winter of 2013-2014, Syringa Mobile Home Park’s water system was contaminated by sewage, resulting in residents’ water being shut off for 93 days. By summer 2018 Syringa had closed, forcing residents to relocate or face homelessness.
In Trailer Park America: Reimagining Working-Class Communities (Rutgers UP, 2023), Dr. Leontina Hormel chronicles how residents dealt with regulatory agencies, frequent boil order notices, threats of closure, and class-based social stigma over this period. Despite all this, what was seen as a dysfunctional, ‘disorderly’ community by outsiders was instead a refuge where veterans, women heads of households, and people with disabilities or substance use disorders were supported and understood. The embattled Syringa community also organized to defend the rights and dignity of residents and served as a site for negotiating with local government, culminating in a class-action lawsuit that reached the federal level. The experiences Syringa residents faced in this conservative, predominately white region of the United States are emblematic of the growing national and global crisis in affordable housing and home ownership, with declining work conditions and incomes for the working-class.
Michael O. Johnston, Ph.D. is a Assistant Professor of Sociology at William Penn University. He is the author of The Social Construction of a Cultural Spectacle: Floatzilla (Lexington Books, 2023) and Community Media Representations of Place and Identity at Tug Fest: Reconstructing the Mississippi River (Lexington Books, 2022). His general area of study is about the construction of identity and place. He is currently conducting research for his next project that looks at nightlife and the emotional labor that is performed by bouncers at bars and nightclubs. To learn more about Michael O. Johnston you can go to his website, Google Scholar, Twitter @ProfessorJohnst, or by email at [email protected].
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In the fourth of five special podcasts about from the recent SSEAC field schools to Southeast Asia, we will be hearing from students and staff from the field school to Timor Leste, which looked at disability and work. This field school was offered to students from health sciences, psychology, and social work. Leader Natali Pearson is joined by co-leader, Kim Bulkeley, and two University of Sydney students – Rosie and Alana.
The students consider many of the important aspects of their experience including: what it’s like to meet a head of state, the value of learning transdisciplinary research methods, managing cultural differences, and gaining insights into their own educational experience and culture by moving outside their usual environment.
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In her book Hell Hath No Fury: Gender, Disability, and the Invention of Damned Bodies in Early Christian Literature (Yale University Press, 2021), Meghan Henning illuminates how the bodies that populate hell in early Christian literature are punished after death in spaces that mirror real carceral spaces, effectually criminalizing those bodies on Earth. Contextualizing the apocalypses alongside ancient medical texts, inscriptions, philosophy, and patristic writings, this book demonstrates the ways that Christian depictions of hell intensified and preserved ancient notions of gender and bodily normativity that continue to inform Christian identity.
Meghan R. Henning is associate professor of Christian origins at the University of Dayton.
Schneur Zalman Newfield is an Associate Professor of Sociology and Jewish Studies at Hunter College, City University of New York, and the author of Degrees of Separation: Identity Formation While Leaving Ultra-Orthodox Judaism (Temple University Press, 2020). Visit him online at ZalmanNewfield.com.
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The debate about whether mental health law should be abolished or reformed is one that is highly charged and to which there are no easy solutions. In Mental Health Law: Abolish Or Reform? (Oxford UP, 2021), Dr Kay Wilson does not shy away from these controversial debates. Examining the work that dignity can do, she makes the case for an holistic interpretation of the Convention on the Rights of Persons with Disabilities. In thinking about mental health reform, she provides a core framework which may guide support and intervention in a way that compels respect for the dignity of the person. This book makes an important contribution to the literature. Its nuanced approach and fearlessness in delving into the hard issues should be required reading for policy makers, lawyers and mental health practitioners.
Dr Kay Wilson is a postdoctoral fellow at the convenor of The Disability Law Network at Melbourne Law School, University of Melbourne. She is also a co-editor of The Future of Mental Health, Disability and Criminal Law, (Routledge, 2023).
Jane Richards is a Lecturer in Law at York Law School, UK.
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An autistic mom of three autistic kids, Dr. Jen Malia is the author of the children’s chapter book series The Infinity Rainbow Club and the picture book Too Sticky! Sensory Issues with Autism. Jen is Professor of English and Creative Writing Coordinator at Norfolk State University. She has a Ph.D. in English from the University of Southern California. We talk about her books, and her advocacy to discuss neurodivergence in children's literature.
Mel Rosenberg is a professor emeritus of microbiology (Tel Aviv University, emeritus) who fell in love with children's books as a small child and now writes his own. He is co-founder of Ourboox, a web platform with some 240,000 ebooks that allows anyone to create and share flipbooks comprising text, pictures and videos.
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