Discussing autoethnographic research and cultural differences in disability studies

Monika Dubiel talks with Gilli Hammer

Do disability studies scholars have to be disabled persons themselves? Is it necessary to have a personal experience of disability in order to properly design, conduct and interpret research in this field? When does the disability of the investigator contribute to the research process, and when is it a detriment? These questions will likely pop up in the mind of a disability studies researcher sooner or later. In our workshop, we present autoethnography as one possible method of searching for answers to these questions.

Autoethnography is a type of ethnographic inquiry in which the investigator combines personal experiences and autobiographical data with a broader sociocultural context. Unlike classic ethnography, autoethnography does not intend to eliminate subjective opinions and personal feelings, but instead places the figure of the researcher as the point of reference for the investigated theme. This does not mean, however, that autoethnography is freestyle essay writing deprived of scientific reliability. It is an approach that requires significant self-reflection and self-awareness on the part of the researcher.

We are two scholars conducting research in disability studies. One of us is disabled, and the other is not. During the workshop we would like to present, discuss, and compare our perspectives and experiences in the field. We will speak about the advantages and disadvantages of both situations, the main challenges we have faced in the field, and how we cope with them. We will also propose some activities aimed at familiarizing participants with autoethnography as a research method.

BIOs:

Monika Dubiel holds Master degrees from University of Warsaw in Psychology and Spanish Philology, both obtained within the College of Inter-area Individual Studies in the Humanities. In 2023 she has been awarded a PhD degree in the field of Culture and Religion Studies from University of Warsaw. In her  doctoral dissertation, she investigated the works of artists with visual impairment in Mexico arguing for thinking about visual impairment as a resource to create new epistemological and practical qualities. Her scientific interests include cultural studies and disability studies with a special focus on the topic of disability in the culture of Latin America. Additionally, she is also interested in the themes of the accessibility of culture for people with disabilities as well as activism of people with disabilities.

Gili Hammer is an associate professor in the Department of Sociology and Anthropology and the Program in Cultural Studies at the Hebrew University of Jerusalem (PhD, 2014). In her doctoral research, Hammer focused on gender performance among blind women, and on the cultural construction of blindness and sight in the Israeli public sphere. Between 2014 and 2020, she studied the field of Disability Culture in Israel and the US, conducting an ethnography with integrated dance companies bringing together dancers with and without disabilities. Her current project examines the sensory practices and cross-sensory translation techniques of deaf, blind, and deaf-blind performers in an integrated theater. Her fields of research include disability studies, anthropology of the senses, gender studies, research of visual culture, and performance studies.

Lecture

José Alaniz

If, in the words of Georges Canguilhem, “It is only because humans are living creatures that a morphological mistake is, to our living eyes, a monster” (134), what does it mean for comics artists to explore the monstrous in an era of Disability rights?

Drawing on scholarship from Disability Studies, the Medical Humanities, Monster Studies and Comics Studies, the talk considers and critiques “monstrosity” in (mostly alternative) European and US graphic narrative as in part an operative visual metaphor for illness and impairment, one profoundly imbricated with other identity categories such as gender, race and nationality.  

I will discuss works including Justin Green’s landmark autobiographical memoir Binky Brown Meets the Holy Virgin Mary (1972), on Obsessive Compulsive Disorder; Al Davison’s The Spiral Cage (1988), on Spina bifida; Džian Baban and Vojtěch Mašek’s Fred Brunold’s Monster-Cabaret Presents: Elephants in Marienbad (Monstrkabaret Freda Brunolda uvádí: Sloni v Marienbadu, 2004), on physical deformity as metaphor for Czech 20th-century historical trauma; Ken Dahl’s memoir Monsters (2009), on herpes; and Emil Ferris’ My Favorite Thing is Monsters (2017), which represents various disabilities through a highly intersectional strategy.

Proceeding from Jeffrey Weinstock’s contention that “to redefine monstrosity is simultaneously to rethink humanity” (275), the talk concludes with a discussion of what it means to “crip” the monster in alternative graphic narrative. As these works make disability hyper-visible through comics’ sequential cartooning techniquesa, they are heavily invested in an agonized exploration of their protagonists’ paths to acceptance, even exultation, of themselves as “monsters” – a self-fashioning crucially premised on physical/cognitive difference. I argue that such self-representational strategies have increasingly come to define a disability identity politics of empowerment and equality since the turn of the 21st century. The comics works examined show the medium at the forefront of that sociocultural change: the “beautiful monster.”

Canguilhem, Georges. Knowledge of Life. Trans. Stefanos Geroulanos & Daniela Ginsburg. Fordham University Press, 2008. 

Weinstock, Jeffrey Andrew. “Invisible Monsters: Vision, Horror and Contemporary Culture.” The Ashgate Research Companion to Monsters and the Monstrous. Ed. Asa S. Mittman and Peter Dendle. Ashgate, 2012: 275-289.

After the lecture, we invite you to an open discussion led by Monika Świerkosz.

José Alaniz, professor in the Department of Slavic Languages and Literatures and the Department of Cinema and Media Studies (adjunct) at the University of Washington, Seattle, has published three monographs, Komiks: Comic Art in Russia (University Press of Mississippi, 2010); Death, Disability and the Superhero: The Silver Age and Beyond (UPM, 2014); and Resurrection: Comics in Post-Soviet Russia (OSU Press, 2022). He has also co-edited two essay collections, Comics of the New Europe: Reflections and Intersections (with Martha Kuhlman, Leuven University Press, 2020) and Uncanny Bodies: Disability and Superhero Comics (with Scott T. Smith, Penn State University Press, 2019). He formerly chaired the Executive Committee of the International Comic Arts Forum (ICAF) and was a founding board member of the Comics Studies Society. He has published three comics/prose collections: The Phantom Zone & Other Stories (Amatl Comix, 2020), The Compleat Moscow Calling (Amatl, 2023) and Puro Pinche True Fictions (FlowerSong Press, 2023). His current scholarly book projects include Comics of the Anthropocene: Graphic Narrative at the End of Nature.

Monika Świerkosz, Associate Professor in Literary Studies at the Jagiellonian University in Cracow. She works in the field of literary theory in conjunction with gender studies, critical theory, disability studies, and posthuman studies. Her academic interests include the cultural production of literary canons, as well as the relationship between literature and embodiment, in particular the transformations of somatic experiences in posthuman times.She is a founding member of the “Critical Questions Research Group” (Faculty of Polish Studies, Jagiellonian University) and editor-in chief of the academic journal “The Polylogue”.Świerkosz is the author of two monographs: Within the Realms of Tradition. Prose works by Olga Tokarczuk and Izabela Filipiak in Dispute on Literature, Canon, and Feminism (Warsaw: IBL 2014),  Arachne and Athena. Literature, Politics, and Women’s Classicism (Cracow: WUJ 2017), as well as the co-editor of Critical Constellation (Cracow: Universitas 2020). She collaborated as a scientific consultant and dramaturgical assistant in the production of two performances dealing with the issue of disability: A Midsummer Night's Dream (2023, dir. by J. Skrzywanek, J. Sobczyk, Teatr Współczesny in Szczecin) and The Anatomy Lesson of Doctor Tulp (2023, dir. by A. Skwarczyńska, Cricoteka).

Activist Affordances: Disability, Shrinkage and Improvisation

For people living with disability, everyday tasks like lifting a glass or taking off clothes can be daunting. As such, their undertakings may require ingenuity, effort, carefulness, and artfulness. In this talk, I draw on visual ethnographies with disabled people living in Turkey and Quebec, and trace the immense labour and creativity that it takes for them just to navigate the everyday. Bringing together theories of affordance, performance, and disability, I propose “activist affordances” as a way to name and recognize these extremely tiny and artful choreographies that disabled people have to do each day for a more liveable world. Activist affordances, in the way I define them, are micro, often ephemeral acts of world-building, with which disabled people literally make up, and at the same time make up for, whatever affordances fail to materialize in their environments. Activist affordances are not like any other affordance in that their creation emerges from constraints, losses and precarity that I broadly conceptualize as “shrinkage”. It is within a shrinking world of possibilities, that it becomes necessary to create affordances in their physical absence, which is why I call them “activist”. Even as an environment shrinks to a set of constraints rather than opportunities, the improvisatory space of performance allows disabled people to imagine that same environment otherwise through activist affordances, presenting the potential for a more livable and accessible world.

PANEL DISCUSSION: ACCESSIBILITY COORDINATION IN CULTURAL INSTITUTIONS

// PANEL DYSKUSYJNY: KOORDYNACJA DOSTĘPNOŚCI W INSTYTUCJACH KULTURY 

Panelists / Paneliści_stki: Rafał Lis, Barbara Pasterak, Jakub Studziński
Chair / Moderacja: Monika Kwaśniewska-Mikuła, Izabela Zawadzka

For the first time as part of our research platform, we invite you to a meeting with practitioners responsible for the implementation and delivery of accessible programmes. 

The aim of the discussion is to summarise two nationwide studies on accessibility coordination in cultural institutions. Practitioners involved in working with accessibility examined what challenges and difficulties people coordinating accessibility programmes face, where they find points that need strengthening, what resources they have and what they lack. 

The meeting will follow the format of two research presentations, ending with a short discussion. 

The event will be held on the ZOOM platform in Polish with simultaneous translation into English.

Seminarium odbędzie się w języku polskim w Warszawie w siedzibie Centrum Sztuki Włączającej.

Uczestnicy seminarium wezmą udział w próbie otwartej zespołu Teatru 21, podczas której  uczestnicy  zostaną zaproszeni do aktywnego uczestnictwa w działaniach performatywnych, improwizacjach i rozmowie. Cztery wspólne godziny będą wyjątkową okazją  do poznania metod pracy grupy, budowania twórczych i podmiotowych relacji, które staja się na scenie tworzywem teatralnym, jak i politycznym - kreowaniem otwartego, różnorodnego społeczeństwa, które przestaje być utopią.

Seminarium/warsztaty odbędą się w siedzibie Centrum Sztuki Włączającej przy ulicy Władysława Skoczylasa 10/12 w Warszawie, 23 czerwca (w piątek) w godzinach 13:00-17:00. Po warsztatach zespół zaprasza uczestników na koncert na koncert Mai Kowalczyk w Centrum Sztuki Włączającej.

Podróż i nocleg każdy uczestnik organizuje we własnym zakresie. Osobom mieszkającym poza Warszawą pokrywamy koszt jednego noclegu (do 300zł) oraz koszty podróży.

Formularz zgłoszeniowy: https://forms.office.com/e/SA5WKzaYNc

Na zgłoszenia czekamy do 15 czerwca.

Teatr 21 to jedna z najbardziej znanych niezależnych grup teatralnych w Polsce. Regularnie podejmuje współpracę w artystami, teatrami instytucjonalnymi i instytucjami kultury w Polsce i za granicą. Rdzeniem zespołu są aktorzy i performerzy z zespołem Downa oraz w spektrum autyzmu. To wielokrotnie nagradzana instytucja pozarządowa, która poza przedsięwzięciami artystycznymi zajmuje się także edukacją i działalnością wydawniczą, w tym wprowadza na rynek klasyczne monografie naukowe z zakresu studiów o niepełnosprawności. W 2022 roku zespół otworzył Centrum Sztuki Włączającej.

LECTURE

Pandemic Im/possible Crip Horizons and the Debts of Postsocialism

Dr. Kateřina Kolářová (Charles University Prague)

Now, as the pandemic seems to turn into a series of chronic health crises, it is painfully clear that the pandemic acknowledgement of shared immunity and vulnerability was a romanticisation that obscured inequalities further dramatized through the force of the viral agent. This talks takes the Czech pandemic motto „ I protect you, you protect me“ as a point of departure to explore why the radical possibilities expressed in the recognition of embodied interdependency   first gained such strong affective attachment and why it ultimately failed. This talk thus reaches back into the early pandemic months for the im/possible fantasies of crip horizons to then consider how the ideological positionings of “postsocialist rehabilitations” and the imperative to pay off debts of socialism undercut such possibilities of utopian reach.

Workshop

Traveling with Code of the Freaks: A workshop on transnationalizing crip cultural critique

Dr. Alyson Patsavas (University of Illinois Chicago) and Dr. Kateřina Kolářová (Charles University Prague)


Code of the Freaks (2020) is a feature-length documentary film that uses a crip cultural critique of Hollywood cinema to talk about social and cultural understandings of disability. It provides audiences with tools through which to critically engage with past, present, and future depictions of disability on screen in order to put these images within the context of the structural oppression disabled people face. While Hollywood films have a global reach, its films interact with national, regional, and diasporic social and representational contexts in ways that produce specific cultural formations and unique dialogues. This workshop session aims to use Code of the Freaks as an entry point into a discussion of disability representations within the post-socialist context in order to draw out these dialogues, overlaps, and productive tensions.

Workshop participants are encouraged to watch Code of the Freaks ahead of the discussion, but a brief synopsis will be provided. We would also like to encourage the discussion participants to bring in and draw from Polish and other (post)socialist examples of disability representation. We also welcome conversation about the resonance and dissonances of the Hollywood representations in the situated contexts.
View the film: https://www.youtube.com/watch?v=v0f8WgtIzy4&t=3610s

Bios:

Kateřina Kolářová is Assistant Professor in the Department of Sociology at the Charles University in Prague, and is also a researcher at the Institute of Sociology of the Czech Academy of Sciences. Her work engages intersections of disability, crip, queer and critical race theories, and focuses on theorisations of postsocialism. Her recent research agenda explore crip epistemologies in relation to microbiopolitics and more than human ecologies. Kateřina Kolářová is the coeditor of Re/imaginations of Disability in State Socialism: Visions, Promises, Frustrations (Campus/Chicago UP, 2021), editor of Jinakost-Postižení-Kritika, the first anthology of disability theory in Czech translation (2013). Her other work appeared in Feminist Review, Journal of Literary and Cultural Disability Studies, Somatechnics, Sociology of Health and Illness. She received the Tobin Siebers Prize in 2019 for her manuscript Rehabilitative Postocialism. (forthcoming with Michigan UP)

Alyson Patsavas is Assistant Professor in the Department of Disability and Human Development at the University of Illinois Chicago (UIC). Her scholarship is situated at the intersections of disability studies, queer theory, and feminist theory and focuses on cultural discourses of pain, disability, and crip epistemologies, as well as representations of disability and chronic illness in popular culture. Patsavas is a writer and producer on the documentary film Code of the Freaks (2020). Her work has appeared in the Journal of Literary and Cultural Disability Studies, Somatechnics, Disability Studies Quarterly, Crip Magazine, Feminist Wire, the Czech Sociological Review, and Lateral.

 

LECTURE

Title: Just Care: Messy Entanglements of Disability, Dependency, and Desire

Lecturer: Akemi Nishida, Assistant Professor, Department of Disability and Human Development, University of Illinois at Chicago

Akemi Nishida engages in thoughtful examination of care justice and social justice enabled through care in this talk. Studying within the context of the United States, Nishida argues that structure of care is deeply embedded in and embodies the cruel social order—based on disability, race, gender, migration status, and wealth—that determines who survives or deteriorates. Simultaneously, many marginalized communities treat care as the foundation of activism. Disabled people in the U.S. have been coming together to assemble community care collectives and bed activism (resistance and visions emerging from the space of bed) to reimagine care as a key element for social change. By looking into lives unfolding in the assemblage of U.S. public long-term care programs, community-based care collectives, and bed activism, she identifies what care does, and asks: How can we activate care justice or just care where people feel cared affirmatively and care being used for the wellbeing of community and for just world making?

WORKSHOP

Title: Just Care: On Mapping and Localizing the Crisis of Care

Chair: Klaudia Muca, Ph.D.

The focus of the workshop is the crisis of care, its sources, and its influence on the everyday life of people with disabilities. In order to provide a multidimensional approach to care and disability, various sources, such as governmental reports on social politics, nonfictional narratives of caregivers and care recipients, academic analyses of the crisis, and manifests of care collectives, will be presented and discussed. To map and localize the crisis more specifically, the crisis will also be considered in the context of the postsocialist transformation of the politics of care in Central and Eastern Europe.

BIO

Akemi Nishida uses research, education, and activism to investigate how ableism and sanism are exercised in relation to racism, cis-heteropatriarchy, xenophobia, queer- and trans-phobia, and other forms of social injustices. She also uses such methods to contribute to disability justice activism. She is the author of Just Care: Messy Entanglements of Disability, Dependency, and Desire (Temple University Press, 2022) in which she examines public healthcare programs as well as grassroots interdependent care collectives and bed-space activism. She teaches at University of Illinois Chicago, while also advocates for disability justice locally and nationally.

Klaudia Muca – PhD in literary studies. Author of the book “Poiesis of Experience, Poiesis of Identity. Narrations on Aphasia” (published in Polish 2019). Fulbright Junior Research Award 2020-2021 at the University of Illinois at Chicago. Research interests: critical disability studies, cultural studies, theory of literature, and modern Polish literature

PART 1

Reproductive stratification and ableism. Women with disabilities navigating reproductive autonomy and social control in Poland

Building on Colen’s notion of stratified reproduction - a concept that sheds light on the inequalities related to the reproductive realm - the seminar will focus on how ableism is shaping and reinforcing these hierarchies. We will discuss the results of qualitative sociological research conducted with 50 women with disabilities in 2018-19 in Poland.​​ The study aimed at analyzing the reproductive experiences of women with disabilities, in relation to the social context shaping parenthood norms. We will explore complex practices of negotiating reproductive autonomy and subversion of ableist norms by women with disabilities, especially around the question of who can be a parent and who decides upon that. We will tackle institutionalized ableism, tensions around accessibility and parental agency, and the ambivalence related to care work versus parenting expectations.

PART 2

Methodology, disability, social change. A reflective session with social scientists.

We want to offer a collective reflection safer space for social scientists at all stages of their careers to rethink together methodological questions and challenges that are intrinsic to knowledge production about disability. Specifically, we want to focus on questions related to:

• what ethical challenges arise at practical level from conceptualization, through data collection to dissemination
• how the (in)accessibility of the research process produces and excludes certain knowledges
• what are the limitations of current empirical data collection practices
• what are good practices within designing empirical research
• how participatory and emancipatory research is understood, under what conditions these approaches can be practiced, what practical methodological challenges occur and what strategies we use to navigate them
• what are key contextual, cultural limitations/specificities (e.g. in regards the post-socialist region) that inform methodological practices
• how research within disability studies can give back to the communities it engages with

We also want to problematise what is the current position of researchers with disabilities in Central and Eastern European academia. What needs to change so that early career researchers with disabilities can be supported to pursue their academic careers? How can academic allyship look like?

The session conducted by Magda Szarota and Agnieszka Król will be based on sharing meeting participants’ own research experiences and group discussions.

BIOS

Agnieszka Król, Ph.D., sociologist, Her academic interests revolve around disability studies, social inequalities, and gender and sexuality studies. Her doctoral dissertation tackled stratified reproduction, ableism and negotiating and subverting ableist norms by women with disabilities in Poland. She is the author of two books: Reprodukcja a reżimy sprawności (2022) [Reproduction and ableism. On motherhood, childlessness, and independent living of women with disabilities in Poland] as well as Rodziny z wyboru w Polsce (2017) [Families of choice in Poland] on queer kinship. She is based in Poland and has been engaged with disability rights, feminist and LGBT+ movements in local and international organizing.

Magda(lena) Szarota, PhD is a Disability Studies scholar, human rights activist, policy-related advocate and photographer. She specializes in technologies of social change including: critical knowledge production, public policies, intersectional empowerment, cross-sectional social justice strategizing and artivism. Since the beginning of the Russian war in Ukraine (2022) she has been involved in organizing evacuations of Ukrainians with disabilities to safety. Additionally, together with Monika Mazur-Rafał she established the Ukraine Emergency Fund run by the Humanity in Action Poland. Twitter: @Magda_Szarota

Book presentation

Disability and Labour in the Twentieth Century - Historical and Comparative Perspectives (Routledge 2023)

In this presentation, we take our upcoming volume as a starting point to analyse disability and labour from a historical and comparative perspective. We argue that the nexus between labour and disability in modern, industrialised societies resists easy generalisations, as marginalization and integration were often two sides of the same coin: While the experience of many disabled people has been marked by exclusion from mainstream production, labour also became a vehicle for integration and emancipation. In addressing one of the research gaps of the disability history field, the volume sheds light on less-studied examples from Scandinavian countries and Eastern Europe including Czechoslovakia, Poland, the Soviet Union, Bulgaria, and Romania. In our presentation, we will focus on two case studies from Sweden and Romania: Staffan Bengtsson will examine the “Swedish Committee for People with Limited Work Ability” which and its final report, published in 1948. Radu Harald Dinu will explore how the blind community in postwar Romania accommodated itself to socialist labour regimes and official expectations to become productive citizens.  The introductory chapter (open access) and the table of contents can be accessed here:

https://www.taylorfrancis.com/books/edit/10.4324/9781003316596/disability-labour-twentieth-century-radu-harald-dinu-staffan-bengtsson

Lecture

Oral History and Disability. Notes from Fieldwork (with some theoretical remarks).

The talk by Marcin Stasiak focuses on the role of oral history in writing history of disability. Based on my own research experience (interviews with "polio survivors"), I will try to discuss how oral history can be refreshing for disability studies in Central and Eastern Europe.

First, the presentation is a kind of reflection from fieldwork. In this sense, it refers to dialogic nature of oral history. It places the problem of knowledge creation in dialogue at its center. At the same time, it asks a key question about the relationship between the interviewer and interviewee. Consequently, it touches on the problems of distribution of power, responsibility (of the researcher) and, finally, the agency of people with disabilities.

Second, it examines the potential of oral history to develop new meanings and insights in relation to disability history. The point of reference here is the two approaches to oral history described by Michael Frisch: "more-history" and "anti-history". The first suggests questions about generating new data, expanding the body of knowledge. The second refers to the "rebel" capacity of oral history. In this context, the question of oral history's ability to reconfigure concepts and theoretical constructs present within disability history and disability studies more broadly will be posed.

BIOS

Radu Harald Dinu is a senior lecturer in History at the School of Education and Communication, Jönköping University, Sweden. His research focused on modern and contemporary history of Eastern Europe and covers a wide range of themes, from the history of fascism to how Communism shaped experiences of disability in Eastern Europe.

Staffan Bengtsson is an assistant professor of Social Work and an associate professor of Disability Research at the School of Health and Welfare, Jönköping University, Sweden. At the centre of his ongoing research stands disability as a societal phenomenon in relation to various theoretical perspectives and models, in which sociocultural dimensions are accentuated in connection to religious and ideological value systems.

Marcin Stasiak, Ph.D. - Marcin Stasiak holds a PhD in  Social and Cultural History and works as  a postdoctoral researcher at  the Faculty of  History, Jagiellonian University, Poland. His areas of expertise are the history of disability, the oral history and cultural history of Poland in  the twentieth century. He recently published a book: Polio w Polsce 1945-1989. Studium z historii niepełnosprawności ( Polio in Poland 1945-1989. Study of the History of Disability), Kraków 2021.

Lecture

How can the concept of disability help us to rethink the contemporary history of (Eastern) Europe?

Monika Baár (European University Institute, Florence):

Disability is a subject that merits study in its own right, but it is equally valuable as an analytical tool which allows to throw new light onto a host of conventional topics and concepts, such as the Cold War, the welfare state and the Iron Curtain. This talk will consider how the lens of disability can provide alternative interpretations of key events of postwar (Eastern) European history and how studying disability provides benefits for 'mainstream' histories of Europe. 

Workshop:

Disability in Illiberal Democracies

Gábor Petri (Democracy Institute, Central European University) with Erika Hruskó

"Evidence shows that human rights organisations in many CEE countries perceive a 'shrinking space' that limits their work on various levels. In our project we collect data from four countries (Bulgaria, Hungary, Romania, and Serbia) to explore how disability movements have participated in policy-making in these countries in the last 10-15 years, and whether organisations and activists perceive a 'shrinking space' that limits their advocacy opportunities. We are particularly interested in how changing opportunities for influencing public policy impact advocacy repertoires. At the workshop, we will present some early results of our study."

For the past three years, Perel, a queer, disabled, Jewish, multidisciplinary artist, has presented versions of this talk show in Berlin, Hamburg, and Chicago, featuring interviews with gay, disabled, Jewish memoirist and poet Kenny Fries. “Life unworthy of life” is an official designation used under the Nazi regime to decide who would be killed or spared. It was used to justify the killing of disabled people under the Aktion T4 program. Perel changed the construction of this term to create a space for the open discussion of legacies of oppression. This version of Life (Un)Worthy of Life will include an opening lecture by Dr. Katarzyna Ojrzyńska (“Remembering ‘Lives (Un)Worthy of Life’”) about the ways in which the patients of psychiatric hospitals who were exterminated by the Nazis during the second world war have been commemorated in contemporary cultures, followed by a presentation in talk show format with Perel, Kenny Fries, and Katarzyna Ojrzyńska, as well as the audience, with an emphasis on the impact of this disability history in Poland and Eastern Europe, as well as how eugenic ideas still are held in societies today, which have resurfaced during the COVID-19 pandemic.

BIOS

Perel is a multidisciplinary artist whose work is centered on disability and queerness as they relate to care, consent, sexuality, and personal and historic trauma. Utilizing choreography to examine power exchange between the artist and audience, “Perel is a master at timing, of tension, relief, and intimacy while creating a space of learning and unlearning” (Victoria DeJaco, Spike Magazine). Perel tours and teaches internationally, as a university lecturer and mentor to emerging disabled artists at organizations in New York and Berlin. They recently received the distinguished award of Disability Futures Fellow (2020-2022) from United States Artists, and the Ford and Mellon Foundations.

Kenny Fries is the author of In the Province of the Gods (Creative Capital Literature Award); The History of My Shoes and the Evolution of Darwin’s Theory (Outstanding Book Award, Gustavus Myers Center for the Study of Bigotry and Human Rights); and Body, Remember: A Memoir. He edited Staring Back: The Disability Experience from the Inside Out. Twice a Fulbright Scholar (Japan and Germany), he was a Creative Arts Fellow of the Japan/US Friendship Commission and the National Endowment of the Arts, received a Rockefeller Foundation Bellagio Center Arts and Literary Arts Fellowship, and grants from the DAAD (German Academic Exchange) and Canada Council for the Arts. He was a Cultural Vistas and Heinrich Böll Foundation DAICOR Fellow in transatlantic diverse and inclusive public remembrance and recently was awarded a Disability Futures Fellowship from USA Artists/Ford Foundation/Mellon Foundation. His current work in progress is Stumbling over History: Disability and the Holocaust, excerpts of which have appeared in The New York Times, and is the basis for his video series What Happened Here in the Summer of 1940?

Katarzyna Ojrzyńska is assistant professor at the Department of English Studies in Drama, Theatre and Film (Institute of English Studies, University of Łódź, Poland). Her research interests mostly oscillate around cultural disability studies. She collaborates with the Theatre 21 Foundation and Warsaw’s Downtown Centre of Inclusive Art. She has translated Rosemarie Garland-Thomson’s book Staring: How We Look into Polish (Gapienie się, czyli o tym, jak patrzymy i jak pokazujemy siebie innym, Fundacja Teatr 21, 2020) and co-edited (together with Maciej Wieczorek) a collection of essays entitled Disability and Dissensus: Strategies of Disability Representation and Inclusion in Contemporary Culture (Brill, 2020). She is now working on a book under the tentative title: Recovering from Social Amnesia: Commemorating “Lives (Un)Worthy of Life” in Contemporary Cultures and translating Tobin Siebers’s Disability Aesthetics into Polish.

Seminar

First Autobiographies of People with Disabilities in Poland (1945-1989)

Polish People’s Republic can be described as ambivalent period in the history of people with disabilities. On the one hand, Stalinist (1949-1956) propaganda didn’t allow on the presence of people with disabilities in public discourse, despite the obvious visibility of war veterans and survivors of the Holocaust or other war crimes. On the second, however, this era was the first time in the history of Poland, when people with disability gained wide access to free of charge education, what allowed them to write about their own experiences by themselves, without intermediaries. What is more, this time was marked by growing gap between secular and religious perspectives on disability. The aim of this seminar is to compare situation of people with disabilities in Communist Poland in the wider context of other Central and Eastern European countries of that time and to present first autobiographies written by Polish authors with disabilities, like Na marginesie życia (On the Margines of Life, 1964) by Stanisław Grzesiuk, Pamiętniki górników (Diaries of Miners, 1973, multiple authors) Gdy moim oczom (When to My Eyes, 1985) by Michał Kaziów, Salamandra (Salamander, 1986) by Elżbieta Anna Łubińska. After presentation of those autobiographies it is possible to make an attempt to answer the question about possible impact of Communist period on contemporary reception of disability phenomenon.

Workshop

Biopolitics and Disability: A Gender Analysis of Medical Discourses about Able-Bodiedness in Interwar Romania.

After 1918 Romania passed comprehensive legislation aimed to honor and support the needs of disabled veterans. During the same time, eugenics was becoming an important stream of medical research and training, with a focus on restricting access to public health on the basis of presumed genetic health or “degeneration”. My presentation examines the tension between eugenicist frameworks for public health policies and the veterans’ administration legislation for disabled veterans’ status. My analysis focuses specifically on how eugenicists defined “healthy” masculinity and aimed to define gender norms based on hereditary traits, and how during the same time frame, doctors trained through this new framework of biopolitics were asked to understand the heroism and specific needs of veterans (all men) who returned home with physical and psychological disabilities from the violence of World War I.

The number of participants is limited and they will be handled on a first-come-first-service basis.

BIOS

Alicja Fidowicz, PhD, assistant professor at Faculty of Polish Studies of the Jagiellonian University in Kraków, Poland. Author of two books: Rural Childhood: Branko Ćopić i Tadeusz Nowak (Wiejskie dzieciństwo: Branko Ćopić i Tadeusz Nowak, Kraków 2018) and Disability in Polish Children’s and Young Adult Literature of the 20th and 21st century (Niepełnosprawność w polskiej literaturze XX i XXI wieku dla dzieci i młodzieży, Kraków 2020) and several articles in journals. Her research interests are disability studies, children’s and young adult literature, Slovenian culture and literature.

Maria Bucur is the John V. Hill Professor of East European history and gender studies at Indiana University. Her books have focused on Eugenics and Modernization in Interwar Romania (2002), Heroes and Victims:  Remembering War in Twentieth-Century Romania (2009), Gendering Modernism.  A Historical Reappraisal of the Canon (2017), The Century of Women:  How Women Have Changed the World since 1900 (2018), and The Nation’s Gratitude: War and Citizenship in Romania after World War I (2022). She is currently researching the history of disabilities in interwar Romania.

Seminar

Understanding disablement in postsocialist Central and Eastern Europe

In this seminar, Teodor Mladenov (University of Dundee) will discuss a framework for a critical and historically informed analysis of disablement in the postsocialist region of Central and Eastern Europe. The framework brings together disability studies, Nancy Fraser’s theory of social justice, and critical studies of postsocialism. This helps understand disablement in the postsocialist region in terms of intersections between state socialist legacies and postsocialist neoliberal transformations in the economic, cultural, and political spheres. Specific instances of disablement will be explored, including continuing institutionalisation, retrenchment of public support, medical-productivist framing of disability, overvaluation of self-sufficiency, and depoliticisation of disability organising. Darja Zaviršek (University of Ljubljana) will provide reflections as discussant, and Ina Dimitrova (Plovdiv University) will facilitate a workshop with the participants to explore the key points in more depth.

Workshop

Understanding disablement in postsocialist Central and Eastern Europe

The workshop will build on the disability matrix that is in the focus of the seminar, and try to situate it within a context marked by the following developments: 1) the wave of “illiberalsim” in Central and Eastern Europe and its impact on disability activism; 2) the decolonization paradigm as a stake within global disability studies and the place of postsocialism in the Global North – Global South dialogue; 3) the politics of disablement/impairment, understood in terms of the ongoing aggravation of the living conditions in CEE as deepening poverty and inequality, pollution, war, collapsing healthcare, etc. The aim of the workshop will be to discuss the place and the (in)visibility of the “Second world” disability and disability studies on these epistemic and material maps.

The number of participants is limited and they will be handled on a first-come-first-service basis.

BIOS

Teodor Mladenov is currently Senior Lecturer at the School of Education and Social Work, University of Dundee. Previously, he was Marie Curie Individual Fellow at the European Network on Independent Living (2017-2019), and Leverhulme Early Career Fellow at the Centre for Public Policy Research, King’s College London (2013-2016). Teodor has research expertise and interests in disability studies, disability theory, international social policy, (post)socialism, and critical theory. He is author of Critical Theory and Disability: A Phenomenological Approach (2015, Bloomsbury), and Disability and Postsocialism (2018, Routledge). In the period 2000-2009, Teodor was actively involved in campaigning for disability rights in Bulgaria.

Prof. Dr. Darja Zaviršek is a sociologist, Chair of the Department of Social Justice and Inclusion at the University of Ljubljana, Faculty of Social Work, and Professor at the Master's programme ‘Social Work as a Human Rights Profession’ at the University of Applied Science Alice Salomon Berlin. She was the Chair of Indosow- International Doctoral Studies in Social Work 2008-2014 and established the Eastern European Sub-Regional Association of Schools of Social Work of IASSW in 2009. She is the president of the EEsrASSW and board member of IASSW and a member and mentor of the Southeast European Academic Women's Leadership Initiative. She was a member of the international teams for the development of social work education at the University of Banja Luka, BIH (2000-2005), Tbilisi State University, Georgia (2006-2012), Pristine University, Kosovo (2006-2010) and Kyiv Mohyla University, Ukraine (1996-2002). She has received several awards and fellowships, including: Honorary Professorship at Alice Salomon Hochschule Berlin (2002); Soros Foundation, SEP, Central European University, Senior Fellowship Grant (2005); Hong Kong Polytechnic University Fellowship (2009); Japan Society for the promotion of Science- JPPS Fellowship (2009); Tunghai University Fellowship (2014); Hokenstad Lecture Award, CSWE (2016), Excellency in Science Award, Slovenian Research Agency (2019), Eileen Younghusband Memorial Lecture (2022). Since 2009 she is the member of the Academic Network of Disability Experts (now European Disability Experts) working with the European Commission.  She is the author, editor, and co-editor of more than 20 books and textbooks and has published over 200 articles in scholarly and professional journals on gender-based violence, disability studies, international adoption and family diversity, and social work history in Eastern Europe and anti-racist social work.

Ina Dimitrova received her PhD in social and political philosophy from Bulgarian Academy of Sciences, Institute of Philosophy and Sociology. Currently she is associate professor in social philosophy and bioethics at the Department of Philosophy and History, University of Plovdiv, Bulgaria. Her research interests include disability studies, politics of reproduction and population, social studies of science, technology, and medicine. She is author of the book Prenatal Diagnosis and Biopolitics in Bulgaria (2013). Her current research is focused on disability activism, disability history and history of the psy-sciences in the socialist context. Among her most recent publications are “Impasses of productivism in disability alliance-building in Bulgaria” in Alliances, Allies, and Disability. Opportunities and Challenges (2020) edited by Allison Carey, Joan M. Ostrove and Tara Fannon, “’Labour is our song!’: Deaf in the Bulgarian Socialist work utopia” (2021) in Journal of Literary & Cultural Disability Studies 15(2), “Beyond labour: Socialist disability policy in the realm of mental health”, forthcoming in Beyond the Iron Curtain: Historical Perspectives on Disability and Labour After 1945 (Routledge, 2022) edited by Radu Harald Dinu and Staffan Bengtsson.

Seminar

Imagology of disability in children's literature

Dubravka Zima, Department of Croatian studies, Faculty of Croatian studies, University of Zagreb

At the seminar Imagology of disability in children's literature, we would study the imagological structures typical for the presentation of disability in children's literature and in children's culture in general. Term imagological is used as term for scientific discipline at the intersection of humanities and social sciences which deals with representations and images, primarily in discursive contexts. Images of individual phenomena thus become units of imagological structures that communities use as shortcuts in thinking about understanding the world. In the context of disability, children's culture is one such community in which imagological concepts – images, stereotypes – are used to simplify complex social and psychological phenomena. In the history of children's literature - especially in European children's literature of the 19th and early 20th centuries - disability is portrayed as a negative state, with many classics of children's literature integrating "solutions" to disability or healing a child with a disability (eg Heidi by Johanna Spyri, The Secret Garden by Frances Hodgson Burnett, Pollyanna by Eleanor H. Porter etc.), and in Croatian children's literature such an approach is active until the middle and even the end of the 20th century. At the seminar, we will map the imagological structures that define disability on the examples of literary texts of children's literature, as well as notice a significant change in the literary treatment of disability in children's culture at the beginning of the 21st century.

Workshop

The Bibliotherapeutic Analysis of the Empathy in The Wonderful Wizard of Oz by L. Frank Baum

Host: Dr. sc. Davor Piskač

The workshop is intended for the general population, and focuses on three different types of the empathy that can be revealed in the literary text. The workshop uses the method of the literary bibliotherapy, the  MED-cycle which is based on the practice of cognitive-behavioral psychotherapy. The composition of the workshop is designed so that at the beginning of the workshop, for 10 to 15 minutes, after a brief introduction, participants are introduced to the three types of the empathy and the bibliotherapy method that will be used for the analysis and the interpretation.

After the introduction, participants of the workshop work on the text by the method of so called close reading, sentence by sentence. Under the guidance of the workshop leader, participants notice and define the types of the empathy that appear in the text, but also analyze the thoughts, the emotions and the actions of literary characters. In this way, in addition to the learning about the empathy, participants can gain insight into the mental and emotional motivation that leads people to different choices in the life.

BIOS

Dubravka Zima (1972) is Croatian Professor of Children's literature and Croatian literature. She works as Associate Professor at the Faculty of Croatian Studies at the University of Zagreb, Croatia. She teaches courses on Children's literature, Croatian literature and Popular culture. In her scientific work she explores cultural and historical frameworks of childhood, girlhood and adolescence in South-eastern Europe in 19th, 20th and 21st Centuries. She is the author of four books on Croatian children's literature, including Introduction to children's literature which she co-authored with Marijana Hameršak (Zagreb, Leykam international, 2015). She is currently working on the book on the cultural history of girlhood in 19th Century Croatia.

Davor Piskač was born in 1968 in Zagreb, where he attended the Mathematical and Informatics Gymnasium than graduated, obtained his master's and doctoral degrees at the Faculty of Philosophy. He also studied at the Institute of Philosophy and Theology. He is currently employed as an assoc. prof. at the Faculty of Croatian Studies, University of Zagreb, at the doctoral studies of the Faculty of Education and Rehabilitation Sciences, university of Zagreb, and engaged at the Clinic for Psychiatry of St. John in Zagreb as a sociotherapist-bibliotherapist. He worked as a high school teacher at several high schools in Zagreb, as a lecturer at the Eötvös József College in the Republic of Hungary, the Charles University in Prague, and at the University of Pula. He was also visiting professor  and the University of Toronto. He is the author and co-author of several books, more than 30 scientific papers and more than 300 journalistic articles. He has participated in more than 32 scientific conferences and led and participate in several scientific projects. He is a member of the editorial board of two scientific journals. In addition to methodology and theory of literature, he is also involved in the bibliotherapy. He has held many bibliotherapy workshops throughout Croatia. For his bibliotherapy engagement he received the award of the City of Zagreb and the Museum of Contemporary Art for the project Bibliotherapy - Stories that heals in collaboration with the cultural centre CKT and the nonprofit organization "Zajedno" of the Clinic of Psychiatry St. John in Zagreb.

Panel discussion

Cripping Eastern Europe: Is Geography the Only Thing That Holds Us Together?

Chair: Natalia Pamuła, University of Warsaw
Panelists:
- Svetlana Borodina, Columbia University
- Ina Dimitrova, Plovdiv University 
- Monika Dubiel, University of Warsaw
- Kateřina Kolářová, Charles University in Prague
The goal of the discussion is to ask about the specificity of disability histories, identities, and experiences in Eastern Europe. The panelists will discuss what the analysis of disability can tell us about Eastern Europe and what, if anything, distinguishes Eastern European disability experiences from Western or global disability experiences. Moreover, the panel will ask what the study of disability in Eastern Europe adds to the existing body of disability theory, and which disability theories formulated in other regional contexts are useful for thinking disability in Eastern Europe.

Workshop

Mapping Disability Studies in Eastern Europe

Host: Sarah D. Phillips, Indiana University
The platform aims to create an academic network of researchers investigating disability in Eastern-European contexts. The first workshop will be an opportunity for participants to map the current state of the art of disability studies in Eastern Europe as well as the gaps in the scholarship. At the same time we will have chance get to know one another's work and establish the ground for facilitating and supporting each other’s research during meetings and discussions.

Alternative text for mind map:

Workshop hosted by Sarah D. Phillips

25 March 2022

Jagiellonian University in Krakow

1. queering disability studies and cripping queer studies

• intersectionality
  • including motherhood
  • trans/communities
• unique perspective
  • the concept of global east

• workshop proposals:
  • specificity of disability studies in Eastern Europe
  • seminars analyzing theoretical work
• exclusion in disability studies/queer studies
• problem: lack of translated theoretical works
  • let's translate!

2. Disability history and heritage

• work
  • care
    • marginalized work
    • labor of love

• historical approach
• value of labor
• (in)visibility
• creative work
  • innovation of deaf and disabled people

• how work is gendered
  • how work/productivity is defined/valued
  • displaced persons seen not as mothers but caretakers/workers

3. disability activism

• similarities and differences between local disability activisms
  • Slovenia
  • Uzbekistan
  • Poland
• activism and/in academia
• different forms of activism
  • religious institutions
  • popular education/popularization

• limitations of activism under different state politics

4. disability art/artists with disabilities

• performative arts
  • "using" disability in artistic practices
  • visibility of disability
• literature
  • representation
    • in non-fiction literature
    • how disability is perceived and defined

• the role of institutions
• accessibility of culture
• workshop proposals
  • meetings with artists with disabilities
  • creative writing

• cooperation of artists with and without disabilities
• representation of various disabilities in comics/film...

5. disability and media/representations

• representation of disability
  • in:
    • school text-books
    • literature

• stigmatization
• education / culture - where change begins?

• workshop proposal: comparative international literature analysis - similarities/differences in representations

6. anything else?

• race is missing
• education present but not as a separate topic
• class - understood differently in different political systems
• ethical and legal aspects

BIOS

Svetlana Borodina is a Mellon Teaching Fellow at the Harriman Institute and Lecturer in Anthropology at Columbia University. She received her Ph.D. in Anthropology from Rice University in May 2020. Currently, she studies post-Soviet cultures and politics of disability inclusion in Russia. Her work is forthcoming in Cultural Anthropology. Already published pieces may be found in Digital Icons: Studies in Russian, Eurasian and Central European New Media, Current History, and Remaking the Human: Cosmetic Technologies of Body Repair, Reshape and Replacement.

Ina Dimitrova received her PhD in social and political philosophy from Bulgarian Academy of Sciences, Institute of Philosophy and Sociology. Currently she is associate professor in social philosophy and bioethics at the Department of Philosophy and History, University of Plovdiv, Bulgaria. Her research interests include disability studies, politics of reproduction and population, social studies of science, technology, and medicine. She is author of the book Prenatal Diagnosis and Biopolitics in Bulgaria (2013). Her current research is focused on disability activism, disability history and history of the psy-sciences in the socialist context. Her most recent publications include “Impasses of productivism in disability alliance-building in Bulgaria” in Alliances, Allies, and Disability. Opportunities and Challenges (2020) edited by Allison Carey, Joan M. Ostrove and Tara Fannon, “’Labour is our song!’: Deaf in the Bulgarian Socialist work utopia” (2021) in Journal of Literary & Cultural Disability Studies 15(2), and “Beyond labour: socialist disability policy in the realm of mental health”, forthcoming in Beyond the Iron Curtain: Historical Perspectives on Disability and Labour After 1945 (2022) edited by Radu Harald Dinu and Staffan Bengtsson.

Monika Dubiel is a PhD student at the Faculty of Artes Liberales at the University of Warsaw. She holds a Masters degrees from University of Warsaw in Psychology and Spanish Philology. She also completed partial studies at Universidad de Barcelona, Universidade de Lisboa, University of North Carolina at Greensboro and at Universidad Complutense de Madrid. She is working on the doctoral dissertation in the field of disability studies, on the topic of visually impaired artists in Mexico. In her research, she explores the possibilities of interpreting disability as a resource in creative work. In her study she combines ethnographic research and literary studies.
Her scientific interests include also accessibility studies, especially questions related to the access to culture, postcolonial disability studies, especially about the region of Latin America, and broadly understood activism of people with disabilities. At University of Warsaw she also teaches courses related to accessibility studies and literary disability studies. Apart from scientific work, she also deals with accessibility issues in practice. She conducts trainings and workshops on disability and access for various organizations and institutions. She consults audio description and other solutions dedicated to blind people. Together with her friend, she hosts an educational YouTube channel and TikTok account about living with visual impairment in Poland.

Kateřina Kolářová is a researcher at Centre for Gender & Science at the Institute of Sociology of the Czech Academy of Sciences and teaches Gender studies at the Faculty of Humanities, Charles University in Prague. Her work engages intersections of disability, crip, queer and race theories. Currently she is exploring issues of microbiopolitics and larger-than-human environmental communities. She is the author of Rehabilitative Postsocialism (forthcoming), and an editor (with Martina Winkler) Re/imaginations of Disability in State Socialism: Visions, Promises, Frustrations. She has also edited a first reader in disability theory Jinakost—postižení—Kritika. Her work has also appeared in Journal of Cinema and Media Studies; Somatechnics; Feminist Review and The Journal of Literary & Cultural Disability Studies.

Natalia Pamuła is an Assistant Professor at the American Studies Center at the University of Warsaw; she graduated from the Comparative Literature Department at SUNY Buffalo in 2018. She works on disability representations and discourses in Polish socialist and postsocialist culture. She published in Aspasia, East European Politics and Societies and Cultures, Canadian Slavonic Papers, Teksty Drugie and Przegląd Kulturoznawczy.

Sarah D. Phillips is a Professor of Anthropology at the Department of Anthropology, Indiana University, Bloomington. She has been conducting anthropological research in Ukraine since 1995. Her broad research interests have been to track the variable effects of socialist collapse on people’s lives, especially in terms of gender formations, health, social inequalities and social justice, and changing citizen-state relations. Areas of major inquiry have included the effects of the 1986 Chernobyl disaster on health and healing strategies, the symbolic fallout of Chernobyl, the role of women in Ukraine’s civil society, the Ukrainian disability rights movement, and service provision for people who use drugs and people living with HIV in Ukraine, especially women. She is currently exploring two major research areas: disability and inclusion in the Russian Federation, and the resonance of Kurt Vonnegut’s writing in the Soviet Union in the 1970s and early 1980s.