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).

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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.

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