Stories Worth Telling: Interpreting Disability Histories

How would one make understandable the challenges my sister faces in holding a cup or tying her shoes with only two working fingers? How would my brother communicate the significance of being unable to speak until he was six when he remains largely non-verbal? In what ways are these and other experiences defined as disabilities, and to what extent does this define the person?

Increasingly, the scholarly and historical understanding of disability has evolved from a “medical model” to reflect “what many disabled persons have long known: there are many different ways to think about disability…” [1] As Susan Burch, Michael Rembis, and Katherine Ott discussed in Disability Histories, this scholarship has encouraged people to discuss disability in meaningful ways by embracing the challenge of seeing disability as culturally- and socially-relative, addressing how disability history has been recorded, and exploring museums’ role in interpreting disability. Given the field’s stated focus on accessibility, museums should be at the forefront of rethinking how disability is interpreted and exploring how disability has historically been viewed.

Eugenics Poster
Eugenics poster publicizing “Unfit Human Traits” and the “Triangle of Life” to show disability as socially inherent. (Courtesy of The Image Archive on the American Eugenics Movement)

As Burch and Rembis discussed, disability was historically understood as a “loss or deficit that was fixed, natural, timeless, and rooted in [the] individual bodies” of helpless victims and social outcasts. [2] What this focus obscured was how these ways of thinking about disability were in social creations. As views and understandings of what was “normal” evolved over time, so too did the socially constructed meanings of physical and mental attributes that, as aberrations from what was “normal,” were deemed disabilities. In other words, “disability is relational, created through relationships among people, with things, to power and resources,” meaning “no one is disabled for all things; disability depends on the person, environment, and activity.” [3] The challenge for interpreting disability history is to promote this relational perspective and move past the tendency to see disability as definitive of people’s entire experience. This is something museums, with their larger interpretive perspective, could have a key role in.

However, such efforts must grapple with the legacy of silence and degradation that surrounds disability histories. This includes the hidden histories of disability issues such as institutional abuses and the intentional social engineering of eugenics, how many historical accounts fail to capture the essence of disability (from how bodies move to how aneurotypical minds think), and how museums have long been silent in this area. [4] Recognizing the void in which interpreting disability histories stand, museums must embrace approaches that speak to and bridge this gap in understanding the experience of disability.

photo (9)
This children’s toy makes clear the distinction between “normal” bodies and “abnormal,” anomalous bodies. (From Disability Histories, courtesy of University of Illinois Press)

A key mode of interpretation for museums in exploring disability’s multifacetedness is through analyzing objects. [5] From objects and technologies to aid in “activities of daily living” to “everyday” objects that can either create impediments or be used without difficulty, material culture significantly informs “disabled existences.” Analyzing material culture illuminates how disability is fluid and situational, and how objects communicate social perceptions of “normal” and “abnormal.” [6] It is essential that museums navigate the interplay between these different types of objects, moving past labels towards seeing objects and accounts related to disability not as “additive components” tacked on to a larger interpretation, but as essential to understanding their interpretation within a larger, more complete historical context.

Deaf Pride
Deaf Pride button from EveryBody exhibit (Courtesy of Smithsonian)

Reflecting the growth of disability scholarship, many museums have looked to collect and curate objects and histories through a more nuanced lens. In 2013, the National Museum of American History opened EveryBody, an artifact-driven history exploring how “normal” and “disability” change over time, while also showing how “valuing disability as a part of one’s core identity is a principle of social empowerment” through disability pride objects. [7] And in 2014, Mat Fraser (an actor with Phocomelia, a limb malformation) exhibited Cabinet of Curiosities, a critical analysis of museum’s silence in interpreting disability histories. Fraser used “disability artifacts” from museum collections in a provocative performance exploring how medicine shaped views of disability and difference by removing individual voices, voices Fraser argued museums could restore. [9] “A medicalized image of a disabled person,” he said, “can be revolutionarily expanded (with) a social perspective.” [10]

Video excerpt of Mat Fraser’s presentation Cabinet of Curiosities. The title is a deliberate play on the historical identity of museums as “cabinets of curiosities” full of odd and unusual items to experience, something that mirrored the experience of people with disabilities who were depicted as odd and unusual in “freak shows” of the nineteenth century. (Courtesy of the University of Leicester, School of Museum Studies)

Fraser’s talk underscored that interpreting disability should not be seen by museums as an accommodation, but an opportunity to expand their focus. To achieve this breadth, museums must explore new and innovative approaches. Artifacts are only the start of what could include oral histories for non-verbal communities and further dialogue on interpreting seen and unseen disabilities. Only in making this attempt can individuals and institutions move away from the perception of disability as a fixed deficiency that defines the individual. To the extent that “we study gender, race, and sexuality not as add-ons but as constituents of what it means to be human,” so too should we interpret disability.

Everyone deserves to experience their own history on their own terms. This is not a radical proposition—our semester has been a testament to the idea that identity, in all forms, is worth exploring.

IMG_2448
Aaron and Shia Lang (Courtesy of author)

Click here for link to full video of Mat Fraser’s Cabinet of Curiosities presentation.

Notes:

[1] Susan Burch and Michael Rembis, “Re-Membering the Past: Reflections on Disability Histories,” in Disability Histories, ed. Susan Burch and Michael Rembis (Urbana, IL: University of Illinois Press, 2014), 1.

[2] Ibid, 3.

[3] Katherine Ott, “Disability Things: Material Culture and American Disability History,” in Disability Histories, ed. Susan Burch and Michael Rembis (Urbana, IL: University of Illinois Press, 2014), 119, 121.

[4] Ralph Brave and Kathryn Sylva, “Exhibiting Eugenics: Response and Resistance to a Hidden History,” The Public Historian 29.3 (2007): 35-37 http://www.jstor.org (accessed April 30, 2016); Ott, 120-121.

[5] Ott, 119.

[6] Ibid, 125-133.

[7] Smithsonian Institution, “EveryBody: An Artifact History of Disability in America,” National Museum of American History, https://everybody.si.edu/ (accessed May 3, 2016).

[8] The Community Consortium Inc. “The Willard Suitcases,” The Lives They Left Behind: Suitcases from a State Hospital Attic, http://www.suitcaseexhibit.org/index.php?section=about&subsection=suitcases (accessed May 2, 2016).

[9] Lyn Gardner, “Mat Fraser’s museum piece challenges us to bring disability out of the box,” The Guardian, January 22, 2014, http://www.theguardian.com/stage/theatreblog/2014/jan/22/disability-mat-fraser-museum-cabinet-curiosities-theatre (accessed May 2, 2016).

[10] University of Leicester, “Cabinet of Curiosities: How Disability was kept in a box,” School of Museum Studies, http://www2.le.ac.uk/departments/museumstudies/rcmg/projects/cabinet-of-curiosities (accessed May 2, 2016).

Featured Image: Gas-powered arms for very young children affected by the drug Thalidomide, from the collections of the Science Museum in London. (Courtesy of Richard Sandell, The Guardian)

15 thoughts on “Stories Worth Telling: Interpreting Disability Histories

  1. Excellent post Andrew! I loved how you talked about taking pride in disability as a form of empowerment. Without getting too personal, I have struggled all of my life with an anxiety disorder. So many people in the world refuse to or simply cannot understand the concept of mental health. Thankfully, I have (as you suggested) taken ownership of my disorder and it is a part of me know. The stigma against it still exists, but accepting it makes me feel empowered to be truer to myself. Thank you so much for writing such powerful blog and for advocating for those with disabilities.

    1. Excellent post, Andrew and great response, Luke. I think mental health, particularly, is difficult for people to wrap their minds around. It is interesting to think about how museums might be able to talk about and present mental health, something that is largely invisible. It would be a challenge, but one that I think would challenge the stigmas associated with mental health and disability in general. Also–Andrew, that picture of your siblings is both adorable AND powerful.

      1. Amazing post, Andrew. As Luke and Christine have mentioned, mental health would be an extremely interesting and beneficial exhibition in a museum. Museums have great power to challenge social stigmas and change people’s perceptions of mental illness. Also, what a great way to make the museum more accessible and inviting to a diversity a people.

  2. Andrew, I can’t say how much I loved this post. You’ve really summed up why museums should embrace the many lenses of disability history, not as a way of checking a box, but to improve the very core of their work. The Mat Fraser video provided a concrete example of what this could look like. It can be as simple as providing a human voice to challenge or complicate an established historical narrative.

  3. Great post Andrew! I think you really hit the nail on the head when you stated, “Ultimately museums, with accessibility long a core focus, need to be at the forefront of rethinking how disability is interpreted.” Museums may be in a unique position to navigate these very important and previously unexplored histories.

  4. Andrew, your post was really impactful. Sharing the personal aspect of your siblings stories is incredibly touching, and the video made me think in a totally new way. I really enjoyed reading Disability Histories because of the material culture aspect, but also because of the strong statements about making the story about the person and not about the disability, or the technology/material culture which they interact with, although objects can be a powerful tool in telling these stories to others in an empathetic way. The way that museums interpret these objects is so important and needs to be done with the knowledge that an individual with a disability can and does retain their autonomy. Oral histories from people with disabilities seem like an extremely powerful tool in accurately discussing these narratives

    1. Julia I completely agree that the personal story was incredibly touching. Andrew, seeing you interact with your siblings is also completely heartwarming, one can see the love between your younger siblings and you. One of the most powerful moments for me in the reading that you touch on is about relationships. Not only relationships to each other but relationships to tangible things. Between the article by Ott and this blog post it really made me think about the relationship those who have a disability (either seen or unseen) have with the world.

  5. Andrew, this was a really powerful post! You make the point that “Everyone deserves to experience their own history on their own terms” and I wholeheartedly agree. Museums should wok with the communities they represent in order to challenge the current narrative that has been written for them and work on telling their own stories in a stronger voice. I like how you mention those that are challenging the narrative already and the video was a nice touch. In addition, I felt the most impact was you relating your personal connection to the subject, which made it a deep and heartfelt post.

  6. Great post! Like you say, our entire semester has prepared us to understand that identity, in all forms, is worth exploring. I liked that you brought up the idea of gathering oral histories from non-verbal communities. I had not thought of this, and it is clearly something that should be explored. I really liked your line, “Fraser’s talk underscored that interpreting disability cannot be seen by museums as an accommodation, but an opportunity to expand their focus.” When creating museum content we must view it as expanding our focus, and never accommodation.

  7. I love how you brought up those mix-and-match toys. Until this week, I’d never thought critically about those sorts of things, and never realized how they can subconsciously influence how kids see disability and difference. This has been eye-opening for me.

  8. Andrew, this post was extremely moving! I think that using the personal stories of your siblings really helped to illustrate exactly why museums need to include the autonomous narratives of people with disabilities, and not just focus on the disability itself. As you so beautifully point out, the inclusion of these stories is not about accommodation, but rather is necessary in order for museums to be truly effective organizations.

  9. Andrew, this is a fantastic post. I appreciate you sharing about your siblings and the information about the mix and match toys was something I had never thought about from a “normal” vs. “abnormal” context.

  10. This is such an excellent post! Thank you for connecting to your own siblings’ struggles. It really helps to make this relatable. Museums should be a forum for community conversation and that includes have space to talk about the range of issues that effect the community, including disability. Thank you for bringing this story to the forefront and telling it so eloquently.

  11. Really insightful post. Bringing your siblings’ experiences into the discussion right off the bat created an intriguing introduction and really hooks the reader in, making it both relatable and thought-provoking. Disability history, like other minority histories have been sorely overlooked throughout history and it’s good to hear that there are scholars who are working on completing that history. However, these histories need to be told to the general public and museums are the perfect way to not only tell those stories, but to also be examples of accessible institutions. As many of us discussed during Matt’s presentation for Science Fair last night, many members of the disabled community do not go to museums simply because most are not accessible and therefore, all museums have a stigma of being inaccessible. Museums have a duty to educate and engage the public, all members of the public.

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