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Variance: Pivoting Pathologized Narratives

The exhibition Variance, which recently closed at the RISD Museum, frames disability in an expansive collection of works and events that redefine questions of belonging and resistance in an ableist world by humanizing bodies that are often harmfully pathologized. It marks an important shift in conversations about representation and agency within institutions.

Variance. The fact or quality of being different, divergent, or inconsistent. Something falling outside of our “frame of desired normality” constructed “under a shared sociocultural understanding of the normal and abnormal.” Variance can be understood in very different ways in a variety of contexts. Frequently, it is used in statistics to quantitatively understand difference as the measurement of the distance of each number from the set’s average. In contrast to this quantified approach, an artistic approach to understanding variance allows for the inclusion of a wider spectrum of embodied experiences.

The exhibition Variance: Making, Unmaking, and Remaking Disability, which just closed at the RISD Museum, centers stories of variance as it relates to disability: the human, embodied representation of being disabled or ill. Visual art allows for a direct expression of these experiences, removing layers of outside perception and the retelling of stories. When artists share narrative and fictional depictions of their bodies, they humanize pathologized bodies and open up new ways of conceptualizing and interacting with the world. The exhibit includes drawings, paintings, and photographs created between 1735 and 2021 from many artists with ties to Providence as well as artists located around the country. Many of the artists identify as ill or disabled, but, as the curatorial team states, “not all these works are made by artists who identify as having a disability or illness.”

Variance: Making, Unmaking, and Remaking Disability expands the traditional definition of disability by including works by artists who identify within the typical understanding of disability as well as individuals experiencing chronic illness, trauma, and other marginalized conditions. The works in this exhibit showcase historical and current depictions of illness and disability and the ways in which art can be shaped by physical, mental, and sensory differences. This expansion of the definition of disability allows individuals to understand the flexibility of this category and consider the possibility that we may all be disabled at some point in our life. Additionally, viewers are able to expand their understanding of "standard" aesthetics and consider a new embodied experience through a different way of perceiving and interacting with the world.

As I first walked through the exhibit, the words “drawings aren't meant to hurt” handwritten in black crayon on a piece of medical exam table piece stood out to me. From Dominic Quagliozzi's series The Frailty Drawings, the piece highlights how an individual has been harmed by the medical system and portrays that ill and disabled bodies are enough. The piece struck me as a raw and vulnerable representation of one person’s inner thoughts; a personal archive of an individual's journey through the healthcare system. The message, written on a medical object that mediates patient-provider interactions, serves as a reminder of Quagliozzi’s agency as he uses art for self-reflection.

Dominic Quagliozzi (b. 1982), Drawings Aren't Meant to Hurt; The Fragility Drawings, 2022. Image courtesy of the artist. RISD Museum, Providence, RI.

Paul Strand (1943 - 2017), Blind Woman, New York; 1916. Image from RISD Museum Website.

The photographed portrait titled “Blind Woman” from Paul Strand’s Portfolio 3 shows a woman with a placard around her neck with the label “BLIND” who is not looking at the camera, seemingly unaware that a picture is being taken of her. It contrasts Quagliozzi’s deeply personal reflection on disability to show an outsider capturing the disabled experience of someone else. Strand frequently used a trick camera enabling him to record images without his subjects’ knowledge.” The use of this portraiture technique, sometimes praised for its ability to capture the truth and depict reality outside of posed portraiture, has also historically been debated for its apparent lack of informed consent. I viscerally reacted to the apparent lack of consent captured in this portrait. This discomfort made me critically interact with the rest of the exhibit and led to more general reflection about the way art can reinforce harmful power dynamics and the exploitation of sick subjects.

Installation view of Variance: Making, Unmaking, and Remaking Disability on view February 1, 2022 - October 9, 2022 at the RISD Museum. Image courtesy of the RISD Museum, Providence, RI. (Portrait of Alice Sheppard middle on far wall.)

In contrast, the portrait of Alice Sheppard is strikingly personal. I immediately felt connected to the subject. The image balances the realistic and intimate depiction of Sheppard with a colorful and playful background, adding a layer of imagination and new perception. The artist, Riva Lehrer, intentionally and thoughtfully deals with ideas of consent and co-production in her work. Unlike Strand, Lehrer explicitly conceptualized her portraiture as a site of resistance and a space to expand and reimagine beyond realism. In RISD’s Manuel 17 (Variance) Lehrer says, “This is why I make portraits. For my collaborators, the world offers stigma. My studio is a site of defiance.” She positions her subject as a collaborator, giving them agency in their representation. Furthermore, as a disabled person herself, she acknowledges the variety of disabled experiences.

Thinking about the creative processes used to produce these three pieces and the varying perspectives they provide about disability brought up questions of consent, agency, power, and representation. At the center of these themes is a complicated question about the power dynamics at play in the interaction with the artwork in this institutionalized space. Institutions often flatten experience by standardizing it; however, it is important to acknowledge that each viewer will have their own specific emotional and intellectual response to the stories of human experience on display. These personal responses contribute to creating an empathetic connection between the viewer and artist as viewers make meaning and recognize the differences between their own experience and that of the artist.

It was jarring to experience this exhibit and then step back into the real world where this diverse understanding of the human experience is so frequently ignored. The questions that arose for me within the gallery space about the violent impacts of ableism and erasure of disabled narratives lingered as I exited the museum, but is this the case for everyone? And are thinking and questioning enough?

If viewers leave the museum with these questions and want to take action or engage with these ideas further, they can access listed resources, interact with some of the works online, conduct personal research into related topics, or attend events that are part of parallel programming organized by the museum. However, actually thinking about these topics critically and taking action towards accessibility and disability justice is entirely dependent on the individual’s interest and motivation. Plus, it is only possible for individuals with the time and ability to engage with these sources. This made me consider the institutional responsibility to encourage reflection and action from viewers and create systems of accountability to continue this thinking beyond the walls of the museum in a meaningful and impactful way.

One way the RISD Museum encouraged individuals to think about disability from another perspective was their parallel programming with Abilities Dance Boston. This open rehearsal breathed life into the gallery space as it positioned dancers alongside the artistic depictions included in this exhibit. The contrast of these moving bodies made a statement about the accessibility of gallery spaces, museums, and institutions more generally as well as suggested alternative ways to interact with the exhibit. The dancers drew embodied links between the goals of the exhibit and their own experience through this open rehearsal followed by a staged performance and conversation. This conversation covered many topics including what it means to be a disabled artist working within the limitations of institutional spaces. Outside of exhibits, the RISD Museum has had a collaboration with Arts Equity for over 30 years. According to their website, Arts Equity “harnesses the power of the arts to change attitudes about people with disabilities” through programming and teaching from the collection. But what’s next for the RISD Museum in their work towards furthering disability justice?

Dancer from Abilities Dance Boston, Mickey West Photography. Image from RISD Museum Website.

I continue to consider the implications of embodied resistance within an institution long after I engaged with this exhibit. Although resistance to ableism occurs in a variety of spaces and the validation of institutions is not necessary for the work of the disabled artists included in Variance to be valued, there is something powerful about disabled bodies being present in a space usually defined by Western standards of beauty and what is considered a “normal” body. Especially powerful were the self-depictions by disabled artists, reclaiming their narratives.

If it is the institution's responsibility to encourage further action towards liberation from their viewers, this means they should first ensure they have created adequate accountability systems for themselves. It is important to note that this is the first time an exhibit has been curated around themes of disability and illness at the RISD Museum. Although this exhibit has closed, its impact should continue to guide the direction of the museum. Time can only tell if this exhibit is the beginning of a shift in the holistic integration of disability within the RISD Museum as the first of continued future actions. Although more exhibits on this topic could be another step in the right direction, holistic integration means more than having a show curated around disability and illness. It looks like hiring disabled artists to work in the museum, increasing the accessibility of arts education for disabled and ill individuals, creating space for the curation of exhibits by disabled artists and cultural workers, actively ensuring accessibility of museum spaces and programs, and being receptive to feedback that will then catalyze change. It also means creating space in other museum shows and collections for disabled artists even if their subject matter is not disability or illness.

It is the recognition that our identity and lived experiences will always shape our perspective and therefore our art. But is it an imperative for disability to be the focus of your subject matter if you are a disabled artist? Is it empowering or disempowering to be so seen for your disability and to be included in a show centering disability? A balance must be found between recognition and visibility versus tokenization. And careful consideration must be taken about how curation impacts the impact of embodied storytelling and the artist’s agency, as well as who is shaping the broader narrative of disability and how it is being institutionalized.

This is not specifically a critique of the RISD Museum. Rather, it is an acknowledgment that attempts to be more inclusive and accessible are complicated. Institutional spaces are rooted in colonial practices, making them inherently harmful and embedded within violent histories of erasing certain narratives, including disabled perspectives. However, this does not mean that liberation and resistance cannot occur in museums. Even if there is still work to be done, the exhibit Variance marks a pivotal moment. In this moment, this exhibit is an essential catalyst for conversations and new ways of thinking. This exhibit portrays all types of bodies candidly and challenges assumptions about the artistic canon. The people who are centered and marginalized by our culture are indicative of deeper societal values. Centering disabled bodies in cultural institutions can have impacts on social and political institutions. Reclaiming humanity and empathy is one way to resist institutional power dynamics, and artistic space can catalyze this radical reimagining. This purpose allows for embodied resistance to take place inside an institution that at first glance may seem counterintuitive.

This review is not meant to answer all the questions I have posed but rather provide room to address future considerations for the RISD Museum and beyond. Power and change-making occur when we explore, question, and critique in order to unlearn “normalized” and “neutral” ways of being. We must have the humility to ask questions but also the humility to hear the answers, to be able to point out what institutions are doing wrong but also to listen and acknowledge what they are doing right. To acknowledge that change is an ongoing process and must be iterative and flexible. After all, as Variance points to in its naming of “Making, Unmaking, and Remaking Disability,” to undo the harmful institutionalized conceptions of disability and bodies, we must rely on our creativity. To transform our understanding and these spaces, we must reimagine.


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