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Old color photo of a young boy standing next to an older woman on an electric mobility scooter in front of a lake.

With grandmother, Point Park, Parkersburg, West Virginia, 1993.

Photo courtesy of Zachary Tumlin

  • “A Body of Culture”: Disability Culture in the Home and Archive

    Disability has been a part of my life for as long as I can remember, but not the Disability community and its culture. On my mother’s side, my late grandmother had polio, and there are at least four generations of neurodivergence, including me—an Autistic who sought out and received a medical diagnosis as an adult.

    Growing up, I observed that in my family, disability was rarely spoken about, poorly managed, and (most importantly for this article) viewed at the individual level. After my diagnosis, I had to decide if that is what I wanted for myself, and if I did not, what my alternatives were.

    In this article, I will examine my grandmother’s role in my disability journey, share some of my experiences as a disabled archivist, and propose an event to promote, cultivate, and preserve Disability culture.

    Notes about Language

    • Polio refers to poliomyelitis, which is a specific, rare paralytic disease caused by the highly contagious poliovirus. Almost three-quarters of poliovirus infections are asymptomatic, and when symptoms are present, they typically mimic the flu. Only a small percentage of cases include paresthesia, meningitis, or paralysis, but the paralysis can be permanent and result in death if it affects breathing. Post-polio syndrome (PPS) is characterized by slowly progressive muscle weakness, fatigue, and muscular atrophy that begins fifteen to forty years later.
    • Like most Autistics, I use identity-first language because autism is core to my personhood and how I experience the world.
       
    • Like many Disability self-advocates, I use identity-first language because I believe in the social model of disability, which recognizes the role external barriers (e.g., physical environment, ableism) play in disabling people. We push back against the medical model, which defines disability as a set of biological deficits possessed by an individual, who has no agency and should be cured, hidden, or killed.
    • I sometimes capitalize Autistic and Disabled for the same reason Deaf is sometimes capitalized—to denote a culture. These communities have significant culture worthy of recognition.

    Differences in Polio Survivors

    Judith Heumann (another polio survivor) made news in 2020 through the release of her memoir Being Heumann and the premiere of the Disability Rights Movement documentary Crip Camp. This was not my introduction to her, but in learning more about her life story, I was surprised at how different it was from my grandmother’s, despite them both being white women who contracted polio in the United States in the 1940s.

    Heumann’s parents were German Jews who had been sent to live with relatives in the United States as children before the Holocaust made them orphans. She contracted polio in 1949 as an infant and became a wheelchair user. She was raised in Brooklyn, then bounced between Berkeley, California, and Washington, D.C., before settling in the latter.

    She holds a bachelor’s in education and a master’s in public health and was a public schoolteacher before becoming a full-time disability rights activist. She was one of the leaders of the Section 504 sit-in at the San Francisco Federal Building, a member of two different presidential administrations, and the first advisor on disability and development at the World Bank.

    Conversely, my grandmother spent her whole life in Appalachia, just like her parents and their parents had done. She contracted polio in 1944-1945 at age eleven but learned to walk again, not needing an assistive device until she broke an ankle, then a leg, decades later (and almost certainly developing post-polio syndrome).

    Her polio story always started with her playing along a riverbank and getting bitten by a mosquito, but that is not how the virus is transmitted. It enters through the mouth and lives in a person’s throat and intestines. If the river was involved, she probably ingested water contaminated with the feces of an infected person.

    I believe that she knew better but maintained the story because it preserved her victimhood. She was not some “dumb hillbilly”—she earned a technical certificate in bookkeeping from a community college, worked as a tax preparer, and enjoyed the mental stimulation of games and puzzles. She was also a talented visual artist, as you can see below.

    Cover of a student publication, The Argus, dated 1951, with a colored pencil illustration of a rose and two hands clasping a rolled up diploma.
    Grandmother (“Ginny” Uhl) and grandfather’s high school student newsletter, senior year, 1951. She did the artwork.
    Photo courtesy of Zachary Tumlin
    Colored pencil drawing of a woman’s face.
    Untitled, undated sketch by grandmother.
    Photo courtesy of Zachary Tumlin

    There may have been times that she let a store owner know about the lack of a ramp, but after my grandfather had prostate cancer, that became the cause that they supported. They followed Lance Armstrong, purchased Livestrong products, and volunteered at the local Relay for Life.

    However, her true passion in life was collecting Cabbage Patch Kids. She was an active member of the official collector’s club and attended their annual meeting, and she spent tens of thousands of dollars on the hobby. Unfortunately, collecting turned into hoarding, as dolls kept coming in but stopped going out, and the focus shifted from status and display to accumulation. Unlike with me as an archivist, long-term preservation was never a concern.

    I understand that Heumann and my grandmother were from different generations (Baby Boom vs. Silent) and had different backgrounds, and I believe that not all disabled people have to become formal self-advocates like Heumann and myself, but I am disappointed that disability resonated so little with my grandmother. Even though I was undiagnosed, and she did not identify as an activist, she still could have shared what it was like to witness the rise of the Disability Rights Movement and the passage of the Americans with Disabilities Act (ADA), for example.

    When there is the presence of disability across family generations, but that commonality is not used to strengthen interpersonal relationships and thus family cohesiveness, we see one of the generational effects of ableism on families.

    Gallery
    An older woman and a man, both sitting or kneeling, embrace and smile at the camera, with a crowd of people behind them. The man is holding up a Cabbage Patch Kid.
    Grandmother with Xavier Roberts (creator of Cabbage Patch Kids), Cleveland, Georgia, 1985 Cabbage Patch Collectors Club Convention.
    Photo courtesy of Zachary Tumlin
    A family in formal wear poses under a tree, with bride and groom center. An older woman in front is on a mobility scooter.
    Maternal side of family, aunt’s second wedding, St. Mary’s, West Virginia, 1995.
    Photo courtesy of Zachary Tumlin

    Personal-Family Collection

    The photos in this article are from a digitization and rehousing project that I began after I completed my graduate degree in archives and digital curation. I wanted to apply what I had learned to my personal-family collection, but I had access only to material that my mother possessed.

    The earliest photos of my grandmother are portraits from 1946-1951, which have her seated and hide any possible use of leg braces. There are no casual or full-body photos until 1951-1952, when she graduated high school and married my grandfather. By then, she is shown standing, but never without support, like a person, car door, or countertop.

    The number of photos per year increases with the birth of my mother and then my aunt, but the frequency at which my grandmother appears does not. She was usually the photographer because she was more comfortable with technology than my grandfather. She was also slower and less steady than him, and thus more likely to be an observer than participant, especially around physically active children. When she does appear, there is no sense of movement, despite her being able to walk (but not run) and climb stairs (with a rail).

    Old black-and-white photo of a couple in a kitchen. The woman is sitting on a countertop, tilting up a cake that says Happy Birthday, Ginny.
    Grandmother and grandfather, most likely her eighteenth birthday, 1951.
    Photo courtesy of Zachary Tumlin
    Old black-and-white photo of a couple, looking at each other and laughing. The woman appears to be leaning on the man.
    Grandmother and grandfather, outside their home, Parkersburg, West Virginia, circa 1974-1975.
    Photo courtesy of Zachary Tumlin
    Old black-and-white photo of a couple in formal wear.
    Grandmother and grandfather, mother’s first wedding, Parkersburg, West Virginia, 1978.
    Photo courtesy of Zachary Tumlin

    By the time of my birth, she is shown using a walker in the home and a scooter in public, but I only remember the latter after she had transitioned to using it full-time. Even then, my grandparents adapted their home and vehicles as little as possible to accommodate her. For example, there was always a van, but never a heavily modified BraunAbility one. Instead, they bought off the lot, removed the back row of seating, and installed a ramp or small crane capable of getting an unoccupied scooter inside (which became my task when I got older).

    My grandfather’s mother appears in only one wedding photo, and her facial expression can only be described as someone who looks mentally or emotionally unwell. This fits with her having experienced a mental breakdown after my grandfather’s older brother was struck and killed by a car while riding a bicycle as a kid. Supposedly, my grandfather’s parents also expressed ableism toward his engagement to a “cripple,” and whether that is true or not, my grandmother hated them, and they are almost entirely absent from the collection.

    My father had a twin who died of AIDS—considered a disability in the ADA—in 1991, before I have any memories of him. He appears only at my second birthday party, mainly because he had moved from West Virginia to Florida, where he found community. His obituary, surely written by his parents, only mentions that he died after an “extended illness.” My father has never spoken about him to me that I can remember, and I have no archival material from that side of my family.

    Gallery
    Old color photo of a young boy sitting in the trunk of a parked van, with a mobility scooter loaded up behind him.
    Rear of grandparents’ van, Dresden, Ohio, 1993 or 1994 Longaberger Bee. A pull-out ramp can be seen in a wooden slot covered with carpet.
    Photo courtesy of Zachary Tumlin
    Old color photo of a man holding up a pair of novelty glasses to his face.
    Father’s twin, my birthday, Washington, West Virginia, 1990. I believe this is the only photo I have of him.
    Photo courtesy of Zachary Tumlin
    Old black-and-white photo of a new bride and groom, flanked by their parents.
    Grandmother and grandfather’s wedding, bride and groom with parents, Belpre, Ohio, 1952.
    Photo courtesy of Zachary Tumlin

    Smithsonian Internship

    My professional aspirations led me to a remote internship at the Ralph Rinzler Folklife Archives and Collections in the Center for Folklife and Cultural Heritage in 2020. Based on my interests and expertise, we agreed that one of my duties would be to conduct applied research on accessibility and disability in the Rinzler Archives and throughout the Smithsonian. I networked with key stakeholders in different museums and research centers, surveyed collections, and presented my findings and recommendations to a pan-institutional audience.

    I viewed the virtual nature of this internship as an opportunity to test what it is like to remotely search for archival material about disability as a disabled person. I wanted to see what I could discover, how easy it was to access, and how disability was presented.

    It is important to emphasize that discoverability and accessibility are related but separate because too often they are used interchangeably. For example, an archivist may digitize a videotape then upload it online, label that accessibility, and stop there, but for users who need captions, the base problem remains. Increasing discoverability can make it easier to increase accessibility, but additional steps are required.

    Cultural heritage institutions must realize that access for some is not access for all and be more intentional and honest about exclusion. If perfection is unattainable (all the collection completely accessible to everyone all the time), exclusion will happen, so who is being excluded and what steps are being taken to minimize exclusion?

    My first finding was that there is a lack of disability material in the Rinzler Archives. A search for “disability”/“disabled” in Smithsonian Online Virtual Archives (SOVA, a public search tool) returned 181 collections with 1,625 items, but only 4 and 10 (respectively) are in the Rinzler Archives. Instead, over 1,000 items are in the Division of Medicine and Science Disability Reference Collection at the National Museum of American History Archives Center. It is also worth noting that this collection focuses on the medicalization of disability and is the result of individual effort on the part of three non-disabled employees.

    My second finding was that there is material that exists but that is difficult or impossible to discover. For example, a SOVA search for “Festival ADA”—a three-day event held in 2015 to celebrate the twenty-fifth anniversary of the ADA—did not return any relevant results, yet there is an event program, twenty hours of audio recordings, and hundreds of photos held by the institution or individuals.

    My third finding was that there is material that is partially or fully discoverable but difficult to access. For example, a SOVA search for “folklore of the deaf” will lead you to a program of the same name from the 1981 Smithsonian Folklife Festival (then known as the Festival of American Folklife), the records of which contain the greatest concentration of disability material in the Rinzler Archives. When I started, there was no indication that more material is available besides 43 audio recordings with 69 logsheets. That has since changed thanks to digital projects archivist Cecilia Peterson, who I collaborated with.

    Now, 23 contact sheets (a positive print of negative images from a roll of film) appear in a slideshow with captions/alt text, four pages of a fully transcribed film logbook are linked to, and 17 videos are listed. However, more work remains: the audio and video need to be transcribed, the video needs to be viewable online and captioned, and the film needs to be digitized.

    Scan of black-and-white film negative strips. The photos show people speaking using American Sign Language, and a woman filming with a video camera.
    Contact sheet from the Folklore of the Deaf program at the 1981 Smithsonian Folklife Festival.
    Ralph Rinzler Folklife Archives

    Looking Ahead

    During that 1981 Festival, Ralph Rinzler (co-founder of the Festival and founding director of the Center) gave a video interview to a crew from Gallaudet University. He began by speaking about how this program was different from previous ones, which had been organized around more conventional regional, ethnic, and occupational groups. With this program, he was trying to present a “sense of groupness” and “what the essence of a group means.” He believed that “any group of people, once it constitutes itself as a group and understands itself as a group and functions as a group, has a body of culture—important cultural material—which is valid for presentation.”

    Without a doubt, the Disability community is such a group, especially in the United States, where we have organized to pass and defend federal legislation, and where over twenty-five percent of the population has a disability. Despite this, our culture is poorly represented in cultural anthropology archives. Most archival records about us are medical, legal, or institutional in nature; created by and for outsiders; and negatively present that which defines us as a group.

    Disability culture is about more than ableism like this and our fight against it. It is our existence in and experiences of this world, which can be joyful. There are so few events that intentionally bring us together to foster and explore this. Instead, we get the annual commemoration of the signing of the (watered-down) ADA and recognition of (symbolic) awareness months, and these things can and do happen entirely without us.

    I would like to propose a much more meaningful event: a Smithsonian Folklife Festival program on Disability culture, which would be a first and the first full disability-related program since 1981. In the above-mentioned video, Rinzler was asked about the possibility of the Deaf folklore program returning, to which replied, “Now that we’ve gotten ourselves thinking about this kind of a program, there is every reason to assume that it will come back.”

    In the forty years since, the closest that we have come is the 1990 Musics of Struggle program, which included participants of the 1988 Deaf President Now protests. Considering Gallaudet’s central role in these two programs, I cannot help but wonder if the Festival would have engaged with disability at all beyond single sessions if both institutions were not located in D.C.

    While Gallaudet and the regional Deaf community would be important stakeholders, it is past time to present them in the context of the larger Disability community and find additional partners. My goals for this program would include that it 1) be majority-led by self-advocates; 2) support as many Disabled staff and participants as possible; 3) de-center medicalization and whiteness; 4) set a new standard for Festival physical and digital accessibility; and 5) involve the Rinzler Archives from the start to prioritize the preservation of and access to any archival material generated.

    Ultimately, I want to reduce the number of disabled people who are disconnected from one another and their culture, like what happened in my family. We do not have to always be delighted to have an impairment, but we should be able to find community and have pride in our contributions to society.

    Old color photo of a naked toddler, facing away, feeding a potato chip to an older woman who is leaning over a bed. A mobility scooter is parked to the side.
    With grandmother, family vacation, Myrtle Beach, South Carolina, 1990.
    Photo courtesy of Zachary Tumlin

    Zachary Tumlin is an archivist, educator, and disability self-advocate who currently resides in Hyattsville, Maryland. He is originally from West Virginia and holds an undergraduate degree in music education and a graduate degree in archives and digital curation.

    References

    Heumann, J., & Joiner, K. (2020). Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. Boston: Beacon Press.

    Kovitz, R. (2016). Guide to the Division of Medicine and Science Disability Reference Collection. Retrieved from Smithsonian Online Virtual Archives.

    Post-Polio Syndrome Information Page. (2019). Retrieved from National Institute of Neurological Disorders and Stroke.

    Taylor, D. M. (2018). Americans with Disabilities: 2014. Retrieved from United States Census Bureau.

    What is Polio? (2019). Retrieved from Centers for Disease Control and Prevention.


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