I WAS NEVER ALONE keeps on moving

I WAS NEVER ALONE (IWNA), a play script based on ethnographic fieldwork in Petrozavodsk, Russia with adults with disabilities, just keeps on moving – developing in new ways and finding collaborators and possibilities that, as a first-time documentary playwright, continue to astound and amaze me.

The February  2016 staged reading  of IWNA (dir. Joseph Megel) at the University of North Carolina Chapel Hill was the focus a recent video from Carolina Performing Arts. Check out a few clips from the reading, and me, trying not to not say the wrong thing, in the two-minute video feature.

Thanks to a grant from the FISP program, the play is moving forward with a more elaborated workshop that will take place in the fall at the University of California San Diego. Auditions for cast members, and meetings with prospective production team members will take place on June 2 & 3rd at UCSD (Dept of Theater & Dance, Galbraith Hall, Rm 20 on the lower level). Sign up for an audition slot here, or contact me or assistant director Jason Dorwart for more information or with access requests.

Meanwhile, script development continues on the Russian side of things, with the Russian-language version of the edited script nearing completion thanks to the collaboration of Valeriya Markina, my colleague at the Higher School of Economics in Moscow, whose own project looks at disability theater in Moscow. This version of the Russian-language script will be shared with research participants, who will have the opportunity to review their own segment privately, and then, in late July, participate in a day long table reading and workshop about issues of disability representation that the script brings up. I’m looking forward to heading back to Russia for the first time since 2014 in order to conduct that workshop!

I guess the show’s subtitle, Oporniki, might have something to it — this thing really does seem to have a backbone!

 

 

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Using Oral History to teach engaged Disability Studies at UNC-CH

I wrote recently about the launch of a collaborative website – a digital archive of oral histories of disability advocacy at UNC-CH, gathered by undergraduate students in two disability studies courses during the spring of 2014. I wanted to highlight the philosophy behind that project, so I’ve excerpted below the “Why Oral History” page from the UNC ADA Legacy Project (written by me with input from collaborators Dr. Lauren Fordyce and Dr. Neel Ahuja). It’s been a fantastic project that we hope to continue with a new crop of undergraduates next spring. We’ve learned so much from curating these oral histories, and we hope the digital archive will serve as a resource to the community going forward.

To be clear, in the exerpt below, any reference to “the website” or “this website” actually refers to the website for the ADA Legacy at UNC-CH Project (not my personal website to which I’m posting this excerpt).

IPicture of Polk Place at the University of North Carolina at Chapel Hill with Wilson Library included in the picture.

Dear friends:

It is our great pleasure to announce the launch of the culmination of a semester of work by the students in the Spring 2014 UNC-CH Anthropology of Disability and Introduction to Disability Studies courses.

As you make your way through the posts on the site, we wanted to give you a sense of how it is that we came to this format for the project, and why we think Oral History is an important form of scholarship for disability studies. We’ve also included some information about the format of the site and the editorial decisions more broadly.

What is Oral History?

Oral History is a method of gathering knowledge about the past from real people in their own voices. Often located as a tradition linked to ethnography, folklore, and folk history, oral histories are also used by scholars in the humanities (English, History) and social sciences (Anthropology, Sociology). Oral history, because it is focused on individual people’s memories and accounts of the past, offers a different perspective from traditional history, which is focused on elites and major events. Oral history can be considered microhistory or personal history. It can also be used to tell the story of struggle or of an outsider group.[1]

Oral History has some unusual conventions. You might notice as you read the Oral Histories collected on this website that the format of people’s quotations look a lot different from the quotes that you are used to seeing in newspapers and in novels. In ethnographic and oral history research, we consider people’s words to be the “data.”

We do our best to transcribe the words of interviewees in a way that is true to how they were actually spoken. We do less to “clean up” quotes and make them look like standard written English than a journalist or novelist would do. This often means striking a balance in terms of making it easy for a reader to understand, representing the interviewee’s intention, and still sticking as close as possible to what was actually said. It turns out that we are all pretty messy when we speak – we don’t always use full sentences, and we say “um” a lot! In keeping some of these imperfections in the text, the intention is to allow the reader to recreate in his or her mind how the conversation actually sounded.

We also try as much as possible to give the reader long blocks of unbroken text from the interviewee, so that they get to read the history in the interviewee’s own words. On this website, we do so using a convention that many ethnographers and oral historians use, which is to place quotations longer than four lines in length in “block quotes” – in those cases, instead of quotation marks, you will know that the words are a direct quote from the interviewee because the block of text is set off from the rest of the narrative with a line break and a paragraph-long indentation.

Why Oral History and Disability?

In the preface to his book, What We Have Done: An Oral History of the Disability Rights Movement, Frank Pelka writes:

“Nothing about us, without us” is one of the the most compelling slogans to come out of the disability rights movement.  … Advocates have had to raise their voices, often in frustration and anger, sometimes in desperation, to a society that assumes they have no voice at all.[2]

While people with disabilities have often been pushed to the margins of society and the margins of history, this project, like Pelka’s, seeks to put the voices of people with disabilities at the very center. Unlike Pelka’s work, this website does include many interviews and stories with people who do not self-identify as disabled, but who have been (and are) making the history of disability inclusion at UNC-CH and the surrounding community.

Catherine Kudlick proposed in her article “Disability History: Why we need another Other” that not only should history and historians pays attention to disability, but that thinking with and about disability will yield new theories and ideas. Just as paying attention to race and gender not only resulted in different versions of history, but also produced whole bodies of theory and interdisciplinary fields of scholarship, paying attention to disability results not only in stories about disability, but in different ways of looking at and understanding the world.

Disability Studies as a by now relatively established interdisciplinary field of study has also recognized that ethnography is particularly important tool for recentering the experiences of people with disabilities. For instance, a quick search of the web archive of the journal Disability Studies Quarterly for the word “ethnography” turns up 45 results (2004-2014); the journal Qualitative Inquiry about ethnographic process often runs articles highlighting methodological innovations for working with people with a range of disabilities.

As a mode of ethnography, Oral History is particularly suited to this project because it allows for student interviewers to engage in depth with a single interview subject. It also is more conducive to establishing a public archive than other modes of ethnographic research, which rely more heavily on the ethnographer to interpret the raw data. Here, the data – the recordings and interviews – are as much an outcome of the project as the summaries that our student interviewers have created.

Why Student Interviewers?

One unusual aspect of this project is that undergraduate student interviewers at UNC-CH have done most of the work of gathering the interviews. We’ve organized the project this way for several reasons.

In the first place, collecting, transcribing, and preparing Oral History interviews takes a lot of time. We realized that by having student ethnographers do some of this work would make it possible for us to gather many more interviews at once than if we did this project without students.

Additionally, for the reasons mentioned above, we believe that a core part of teaching disability studies is to allow people with disabilities to tell their stories in their own words.  For students in both of these courses, learning directly from people with disabilities, advocates, and allies is in line with the ethics of both disability studies and anthropology. Students, with input from us, have struggled with the work of representing their interviewees; this was a trying process, and one that we think is absolutely critical to the work of learning to understand the problematic, dehumanizing, and unjust ways that people with disabilities have been represented historically (and, sadly, in many cases, today).

For more on the recruitment process for this project, please see the FAQs on the Get Involved! page of this website.

What about the Other Blogposts?

In addition to the original oral histories posted on this website, our students have also contributed topical blog posts on issues related to access, disability advocacy, and disability experience at UNC-CH and in the surrounding community. The topics of these posts were chosen by the students themselves, approved by us, and researched and written by the students. All posts went through a rigorous editorial process before being posted to the site and made public. Students were asked to verify all quotations and representations with anyone named in their post. The website editor checked citations and facts, and many students posts went through several rounds of revision. Any photographic representations have either come with emailed consent from the photographer and those pictured, or are reposted from another web source. The website editor also edited all posts for grammar, style, and formatting.

How Should I Read this Site?

The Oral Histories on this site appear as blog posts, interspersed with topical stories by students that are meant to capture related aspects of life on the UNC-CH campus. You can start on the home page and simply work your way down, reading those posts that interest you as you go.

Or, if you are interested in a particular topic, you can use the tag cloud in the margin of the home page to find posts that have been tagged with that category. This works like an index for our digital archive. For example, clicking on the phrase “Students at UNC” will bring you to a discrete page; as you scroll down you will see that the site has pulled up all of the posts and Oral Histories that are about “Students at UNC”. The bigger the phrase appears in the tag cloud, the more entries it will pull up. This tag cloud will change over time as we add more posts to the site. If you like a post and you want to read others in the same category, you will find the list of relevant categories at the bottom of a given post.

An image of the tag cloud for this site

Finally, if you are looking for a specific entry, the quickest option is to use the search function. For example, if you want to read the post written by a certain student or about a certain community member, you can type that person’s last name into the search box in the side column and click “search”.

A Note on Terminology

In editing the student work that appears on this website, we have had to make several editorial decisions about what language and descriptive terminology about disability is appropriate. As disability scholars have documented (Linton 1996), there are striking ways in which language has been used to dehumanize and medicalize disability, and disempower people with disabilities. In accordance with many American disability advocates and disability studies scholars, we have erred on the side of the “people first” vocabulary that prefers “people with disabilities” or “a person with a mobility impairment.” Of course just as some people prefer this language, others, for instance many advocates for neurodiversity prefer the term “autistic person,” and British conventions often prefer “disabled person” in recognition that the environment is disabling the person. [3]

At the same time, in the Oral Histories, we have preserved the terminology that interviewees themselves used. Our first priority as researchers is to represent people as they really are and as they wish to be represented.

In all other cases, we have done our best to remove or trouble ableist language or sentiment in both student writing and in any and all representations that appear on the site. But, as editors, we are imperfect. If you notice language or sentiments that do not meet this standard, please let us know.

Making this Website Accessible

In creating this site, we’ve done our best to follow conventions of website accessibility to make sure that as many people as possible can visit and use the site smoothly.

For screen-reader users, we have done our best to make sure that photos and links open in a separate tab or window. We have also done our best to provide substantive and useful Alt descriptions of photos.  If you find any elements of the site which are not up to this standard, or would like to suggest another way in which we could make the experience better for screen-reader users, please let the site editor know by email.

For English-language learners or visitors to the site who prefer to read simple text, we have included “Simple English” versions of several posts (link to Simple English tag). We realize that not everyone reads at a college level; we struggled with how to approach this issue. Many thanks to Ellen Perry for bringing this issue up. In the end, we decided to keep most posts at a college reading level (partially because much of the text was prepared by college students as part of their coursework). Eventually we would love to have a Simple English version of every post! We had to decide which posts to rewrite in Simple English first, and we have prioritized those posts that are about people with intellectual or developmental disabilities. If you find a post that you would like to read in Simple English, but do not see a Simple English option (a link at the top of the post just under the title), please let us know! We will be happy to write a Simple English version and post it.

We haven’t used many videos in this site, but when we have reposted videos from other sites, we have tried to use videos with captioning.

Are there any other ways that we could make visiting this website a more accessible experience? Let us know!

Thanks for Stopping In!

Without further ado, please enjoy the website! We hope that this project serves as a resource to the community in the years going forward. We are truly honored to present what we understand to be the first consolidated record of the immense advocacy work that has gone into making the UNC-CH campus and communities accessible to people with a diverse range of embodiments and minds, we think this is a pretty good start. Just as our advocacy work is not done, and accessibility can never be fully “achieved” but only worked toward, we hope that this website will keep growing in the years to come.

Signed,

Cassandra Hartblay
PhD student, Department of Anthropology
Project Research Coordinator, Website Editor

Lauren Fordyce
Medical Anthropology Lecturer, Department of Anthropology
Instructor, Anthropology of Disability

Neel Ahuja
Assistant Professor, Department of English and Comparative Literature
Instructor, Introduction to Disability Studies

April 2014

 


[1] For more on Oral History as a method, see:

DeBlasio, Donna Marie, ed. Catching Stories: A Practical Guide to Oral History. Athens,Ohio: Swallow Press. 2009.

Charles Price “Becoming Rasta: Origins of Rastafari Identity in Jamaica.” NYU Press: 2009.

[2] Disability History Citations:

Kudlik, Catherine J. 2003. “Disability History: Why We Need Another ‘Other.’” The American Historical Review 108 (3).

Pelka, Frank. “What Have We Done: An Oral History of the Disability Rights Movement.” University of Massachusetts Press, 2012. ix.

[3] Discussion of disability terminology:

Linton, Simi. Claiming Disability : Knowledge and Identity. New York University Press. 1998.

Davis, Lennard. The Disability Studies Reader. 2nd ed. New York: Routledge. 2006.

Brown, Lydia.  “Ableism/Language” on her blog Autistic Hoya. Accessed April 28, 2014. http://www.autistichoya.com/p/ableist-words-and-terms-to-avoid.html

Phillips, Sarah D. Disability and Mobile Citizenship in Postsocialist Ukraine. Indiana University Press, 2011. pp. 249-252.

Website Launch: The ADA Legacy Project at UNC-CH

An invitation to attend the Website Launch party - white text on a background of colorful watercolor circles

I have been lucky to work over the past semester with Dr. Lauren Fordyce and Dr. Neel Ahuja on an engaged research project. Undergraduate students in both Dr. Fordyce’s and Dr. Ahuja’s courses have worked to gather oral history interviews and relevant news and events on issues related to disability advocacy and awareness on the UNC-CH campus and surround community. As the research coordinator and website editor for the project, I have recruited participants, coached student interviewers, and fact-checked and revised the student work.

Now I’m very excited to be finally launching the website with all of these collected stories in one place. As far as we know, this website is the first archive of disability history at UNC-CH. Down the road, we’ll be working to figure out how to save the digital archive and the original interview recordings and transcripts.

But for now, we just want to invite you to the party!

Join us for a Launch Party to celebrate the project participants and the hard work of our student interviewers.

Where: The Student Union at UNC-CH (at the corner of South Rd and Raleigh St, next to Davis Library and the Student Stores), Room 3103

When: Tuesday, April 29th at 1pm

What: Cake, snacks, mingling, and short presentations from student-interviewers about the Oral Histories

Everyone is welcome to attend this event. We are very excited to present this engaged, interdisciplinary project, and we hope that you can join us.

If you have participated in the project in any way, and would like to sign up to speak at the launch party, please let us know!

Please contact Cassandra Hartblay (hartblay@live.unc.edu) with concerns or accommodations requests.

**The party is sponsored by the Department of Anthropology**

Teaching Engaged Anthropology: Disability History at UNC-CH

Screen Shot 2014-03-30 at 12.41.52 PMThis spring, I am very excited to be working with medical anthropologist Dr. Lauren Fordyce, instructor of the Anthropology of Disability course at UNC-CH, and Dr. Neel Ahuja, instructor for the Disability Studies course housed in the English department, to launch an applied undergraduate course project that seeks to contribute to a sense of disability history at UNC-CH. While the UNC-CH library system houses many excellent archives documenting the histories of various oppressed groups coming into visibility on the campus, there as of yet is not a disability history collection. By working with undergraduate students and networks of disability allies and advocates on campus and in the broader community, we have dreamed up a project that will gather oral histories relating to activism and access on the UNC-CH campus.

This local project will eventually link up with the national ADA Legacy Project, which I learned about at the 2013 Society for Disability Studies meeting. The 25th Anniversary of the Americans with Disabilities Act is on July 26, 2015; The ADA Legacy Project is a national effort that is working to preserve the history of the disability rights movement; celebrate its milestones; and educate the public and future generations of disability advocates.

This project furthers the tradition that Dr. William Lachicotte (creator of the UNC-CH Anthropology of Disability course) and CCDJ launched a few years back, that the undergraduate students in the Anthropology of Disability at UNC-CH conduct an applied project.

As the Graduate Research Consultant for the ADA Legacy Project at UNC-CH, I worked with Dr. Fordyce to plan and develop the research design for the project. I have been busily working the networks, reaching out to folks across campus to recruit people to be interviewed. With the participant list in place, I am working with Dr. Fordyce and Dr. Ahuja to train and support undergraduate students to conduct oral history interviews (often for the first time), to analyze their interviews and draft blogpost oral history narratives that meet the approval of their interviewees, and to create and publicize a digital archive for these interviews. With Stevie Larson, I’ve also been posting sample topical and archival blogposts on UNC-CH disability history issues, and helping students to craft and revise their own informational posts.

I couldn’t be more excited about the work the students have done so far, and the amazing narratives that the interviewees are contributing. As always, this is a learning process for all of us, and we can only just begin to now peek over the horizon to imagine what knowledge this work will produce.

Stay tuned for an announcement of the official launch party for the ADA Legacy Project blog when student oral histories will be posted, and in the meantime, follow the project on Twitter!

Play premiere in Petrozavodsk!

This month my friends and collaborators in Petrozavodsk present the city’s first-ever social theater project. The play, which premieres on November 27th and 28th, is a collaborative work, coauthored by children with disabilities in the city and knit together by theater professionals Oleg Lipovetsky and Lidiya Pobedinskaya.

Screen Shot 2013-11-21 at 7.40.45 PM

The brain child of an open collaborative of enthusiastic young people, the idea for the project started as a spark to create something new in the city that would be both artistic and socially meaningful. In the fall of 2012, I was invited to join the loose-knit crew of volunteers, with the idea that it might be possible to do some project involving children with disabilities in the city.

By mid-winter, my friend Lyuda was running from school to school around town, recruiting teachers to participate in the project and collect stories from children who, based on their disability, were sent to particular institutions; meanwhile Zhanna was holding music classes at the rehabilitation center to gather and record original compositions; Nadya was looking for sponsors; and Oleg was rustling up support in the theater community.

With all the drawings and music and stories collected, Oleg and Lidiya sat down to spin these threads into a story. The result, Privokzalnaia Skazka, or, A Train Station Tale, is set in a busy train station hall. A mysterious stranger encourages passersby to look in his suitcase — and all come away with memories of the creative spirit and true selves of their own childhood selves — represented here with the texts composed by the children. But the dialogue that ties the children’s dreams together paints a different picture. The characters in the train station themselves are complex, the texture of their interactions rich, and darkly humorous, and the language of the play is both accessible and nearly ethnographic in its patterning on the cadences of every day life. A call for creativity, and pausing to appreciate the little things in a bustling world, the story appeals to children and adults alike.

Just before I left Petrozavodsk in May 2013 at the end of 10 months of dissertation fieldwork, we hosted a staged reading and Q&A for families whose children had participated as coauthors. It was the first time the play had been read aloud, and the families were the first to hear it.

I wish I could be there for the big premiere!

Russian speakers, you can find articles about the play in the local press here, here, and here. And don’t miss the video below!

A Train Station Tale

 

Installation Launch: Cripping Cyberspace

I am absolutely thrilled to announce the launch of my new ethnographic installation in its digital incarnation this Friday, September 27th!!A screenshot from the home page of the installation website, showing the heading, the menu, two paragraphs of text, and three photos of unusable ramps in Russia

The project, Do You Like This Installation?, is one of four commissioned works featured in a contemporary online art exhibition titled Cripping Cyberspace. The broader exhibition is curated by uber-talented Amanda Cachia, presented by the Canadian Journal for Disability Studies, and is debuting as part of the Common Pulse Arts & Disability Festival, taking place in Durham, Ontario, Canada.

This week I’m also launch a beta version of the physical installation as an open studio work. It will premiere to the general public for viewing and interactive engagement later in the fall of 2013.

Starting now, everyone is invited to visit the digital interface for the project, to view the installation photos and videos, and to VOTE for their preference!

Additionally, Amanda has recorded an interview with me about the project, which you can watch below.

Please take a few minutes to engage with the ground breaking work presented by the other artists & collectives in the exhibition. Katherine Araniello takes up a beat to break it down – I particularly like the moment when she hits us with “infectious, infectious, infectious”. Sarah Hendren, as usual, is out of the this world, pushing limits with an extension of her slope : intercept project that explores the possibilities for audio description as descriptive soundscape. The Montreal In/accessible Collective has created a phenomenal series of digital public service “posters” that sets out to crip the landscape, “to impair ableism and damage the structures of power that reinforce the ‘normalcy’ of ableist architecture.” I can’t quite get over being included in this badass-sophisticate collection of rad ruffian crip activists!

It’s been a long road to this moment of seeing activism, art, and critical disability theory come together in such an exciting way. Preliminary feedback confirms the convictions that performance ethnography methodology & engaged scholarship have suggested – a public anthropology, a non-textocentric anthropology, a digital/visual/embodied ethnographic output provokes a dialogic engagement with audiences and collaborators in ways that text alone simply can’t.

 

Fall teaching – the UNITAS curriculum for social justice

I’m very excited to be working this coming school year with Maggie Morgan-Smith and Anna Agbie-Davies to teach an amazing course that focuses on diversity, social justice, and why ethnography is an important methodology for engaged scholars. The UNITAS curriculum has been around as a “Living Learning Community” at UNC-CH for quite a few years now, and has gone through its share of changes and growing pains. For now, it’s at home as a two-semester course in the anthropology department, with an optional residency component for students in a campus dorm. The course is open to undergraduate students at all levels, with the understanding that we are all always working to better understand how to take our theory into practice and our activism into the classroom.

Check out the flyers we’re circulating to publicize the course [click on the image for a higher resolution]:

UNITAS, n.: (specific to UNC-­‐CH) a year-­‐long learning experience for diversity and social justice, that combines classroom academics with real world activism. [photo of Moral Monday protest]*******BREAKING NEWS!!!********* for the first time since its inception, the 2013-­‐2014 UNITAS course will be open to students who have not signed up to live in the UNITAS dorm through Res Life. You can also sign up to live with your fellow students on the UNITAS hall! ************************************ ANTH 92 (fall) + ANTH 93 (spring) TTH 5:00-­‐ 6:15pm, Alumni 205 Instructors: Cassandra Hartblay and Maggie Morgan-­‐Smith What is social justice? How can your academic studies at Carolina contribute to understanding and addressing injustice in our society? The UNITAS living learning community was founded by a coalition of students and faculty to create a unique program that allows students to develop a common vocabulary to talk about diversity through academic work in the classroom, and to take those skills into engaged activism in the community through a service learning project. Where is sexism, classism, racism, ableism, and heterosexism in our community? How are community members working to challenge these forms of domination? Based in the anthropology department, the year-­‐ long UNITAS course encourages students to understand how ethnography -­‐ writing about human difference -­‐ can be both a way of learning and a way of challenging the status quo. To sign up for UNITAS, please contact the anthropology department registrar, nicholas.leblanc@unc.edu Questions about the course can be sent to the instructors, smithmmm@email.unc.edu and hartblay@email.unc.eduflyer_unitas_1 copy