Feel(in) the Gaps: An Experimental Dialogue Around Invisible Disabilities

Cinzia Greco and Maica Gugolati reflect on Feel(in) the Gaps, an interdisciplinary art-research exhibition that took place in Vienna, Austria (2023).

Feel(in) the Gaps exhibition launch poster
Feel(in) the Gaps Exhibition Launch Poster. Credit: VBKÖ.

How can we understand or feel the ambivalent and challenging experiences associated with (in)visible disabilities? “Feel(in) the Gaps: Invisible Disabilities” is an experimental and multidisciplinary art-research project that offers one attempt to answer this question.

As the wordplay in the title suggests, the exhibition explored invisible disabilities by filling-feeling the gap between the external perceptions of dis-abled people, and the individual and collective feelings of disabled people, starting from our standpoint or sitpoint (Hardstock 1983; Garland-Thomson, 2002). We started two years before the opportunity of having an art-show as an international group-sharing, with no intention or direct goal of making a specific layout, but to create a “safe-space” where we could learn from and possibly support each other. These long-term conversations became the foundation for the artistic projects informing the exhibition. Feel(in) the Gaps was an opportunity to explore disability not as an “object” of study but rather as a way of living and inhabiting reality in complex, ambivalent, sometimes tricky ways. Combining ideas and approaches from anthropology, disability studies, activist experiences, and art practice, in Feel(in) the Gaps, the physical and virtual space became an anthropological “field” welcoming the exhibition as an extension of our dialogic methodology.

Feel(in) the Gaps was an interdisciplinary five-week initiative, from September 7th to October 14th 2023, in Vienna, hosted and supported by the Vereinigung bildender Künstlerinnen Österreichs (VBKÖ), the Austrian Association of Women Artists. A series of events – meetings, workshops, performances, and initiatives online and onsite with the artists and other groups of activists and artists supported the exhibition. “Curated” dialogically by one of the artist-researchers, Maica Gugolati, Feel(in) the Gaps involved the participation of four other artists, colleagues, and friends between the Majority World and the Global North. Letícia Barreto and Jaime Lee Loy, educators and visual artists from Brazil and Trinidad and Tobago, respectively; Cinzia Greco, a Southern Italian medical anthropologist working at the University of Manchester (UK); Gabrielle Le Roux, a South African artist and activist; and Maica Gugolati, a PhD multi-based anthropologist of art and performance, as well as artist, curator and researcher. As some of us are dyslexic, all texts used a dyslexic-friendly font; moreover, we organized sign language interpretation at the opening of the exhibition, which, unfortunately, due to lack of funding, could not be maintained for the rest of the activities.

Exhibition Installations and Contributors

  • A photo of Gugolati's installation. Two flat screen televisions sit at right angles to each other on white boxes of slightly different heights. On one TV is a blurry silhouette alongside two hands pressed against the screen. On the other TV two images of a woman in pink are juxtaposed: one in which she's kneeling, the other in which she's wrapped within a pink shawl, and visible only as an outline of a figure. In the background are Galazzini's multicoloured carpet on the floor and another image of the same woman kneeling with her hands clenched in her short black hair and her face to the floor in a pose suggestive of pain or despair.
  • Another photo of Gugolati's installation from a different angle. This angle reveals a fourth screen behind the right-angled TVs showing tiled images of medical scans depicting a human joint. Galazzini's multi-coloured carpet is the foreground.
  • A close-up of Barreto's self-portrait which is made up of monochrome images of parts of her face layered over a colour headshot with visible gaps to convey a cracked or split appearance.
  • A wider shot of Barreto's artwork on the white wall of the exhibition space. A pair of figures stand in front of a number of Barreto's self-portraits which are arranged in two groups: monochrome and colour. The monochrome portraits are loosely grouped together on the wall while the colour portraits are arranged vertically.
  • A close-up of Greco's installation comprising of a white base with five piles of different postcards: four are arranged in each corner with the fifth centred at the bottom of the display. Text flows through the middle of the display.
  • Someone sits cross legged in front of Greco's display in the exhibition space and has a postcard in their hand showing an image featuring palm leaves.
  • A photo of Lee Loy's installation on the wall of the exhibition space. A line of sculpted human hearts are arranged horizontally across the wall. The hearts each have a small display card beneath and are slightly different shades of white and cream against the plain white wall.
  • A photo of someone examining Lee Loy's installation, using a square piece of glass to magnify the detail on the rough surface of a heart sculpture.
  • A photo of a figure sitting cross legged in the dark to watch Le Roux's video installation. The video featuring an insect within a flower is visible in the top right hand corner of the image, suspended above the sitting viewer.
  • A different angle of Le Roux's video installation, showing a closer and clearer image of the insect on-screen. The surrounding room is dark, with only the screen visible.

Gugolati presented Petals Battle (2023) (Figure 1 and 2), a multimedia installation including mixed media video performances on fibromyalgia, in post-mortem collaboration with the artist Maria Rita Galazzini, who made a series of tapestry carpets about cardiac trauma. Gugolati’s work was an invitation to experience the changeable sense of mobility-restriction and un-balance felt while living with chronic pain.

Barreto presented a selection of self-portraits in her series Tearing and Mending (2019-ongoing) (Figure 3 and 4), through which she explored ways of “mending” herself following the Brazilian mannerism of “gambiarras”, translated as “quick -improvised- fix”. In Barreto’s work, the actions of “tearing and mending” are a metaphor for the constant process of relearning, re-adapting, and transforming oneself as a way of dealing with multiple immunity diseases. 

Greco presented a postcard series, Are we living in the same world? (2023) (Figure 5 and 6), in which each picture was associated with a short description of what it is to inhabit the world as a neurodivergent person from her sitpoint.

Jaime Lee Loy presented In-Part (2023) (Figures 7 and 8), an ephemeral series of anatomical, hollow human hearts created with edible papers and mixed medical materials. These hearts were fragile and impermanent objects, illustrating Lee Loy’s investigation of her experience with collective trauma and her individual invisible disabilities.

Le Roux presented an interactive video, A moment of wonder (2023) (Figure 9 and 10), which shows a beetle indigenous to South Africa, immersed in a protea flower with whom they lived during the pandemic lockdown.  Le Roux, suffering from Long Covid at the time of the exhibition, invited the audience to interact with their work by sending WhatsApp messages to extend the experience of posthuman relationships and their knowledge process.

As the above photo gallery and video illustrate, the contributing artists proposed their art-research practices, workshops, performances, and conversations with the audience to extend the discussion further, to dig into the multiple meanings and manifestations of disabilities. To expand the dialogue, the queer art-research collective Ostensible, from France, was invited to join the “shared conversation” with an online performative speech about love and intimacy in the context of invisible and visible disabilities. On-site, in Vienna, Gugolati launched a collective cooking performative experience in collaboration with AfroRainbow Austria to experience and debate the “conviviality” of chronicity/ies.

Recognising In/Visible Disabilities

Within the umbrella term of “invisible disabilities”, the group includes permanent and transient disabilities, such as autoimmune diseases, psychological and neurological conditions, unrecognized or medically unexplained disabilities, chronic diseases, Long Covid, and forms of trauma explored both as the consequence of disability in ableist societies and as disability in itself. Through this last dimension, we identify visibility, from a collective and individual perspective, as a notion of “recognition” that can become a source of empowerment or disempowerment (Mubi Brighenti 2010, Hviid et al. 2013). We connect this notion and the embodied experience of visibility and invisibility with those of domination, ableist performativity and social expectation, collective recognition, subjugation, and confirmation. Hence, translated into our dialogical curatorial and art research practice is the fluctuation between being “labelled” through stereotypical disability categories and not being recognized because of the lack of stereotypical categorization. What we define as invisible maintains all the historical “passing” phenomena, including paradoxical adaptation, self-violence, and camouflage. Although we began with an opposition between visible and invisible disabilities in mind, we ended up blurring this dichotomy through this process.

With and Despite Invisible Disabilities

Feel(in) the Gaps tried to extend our conversations and sharing to the audience. As a conversation, the exhibition changed and evolved throughout the weeks; the very space of the VBKÖ where the events took place changed several times to accommodate the different types of meetings both in person, online, and in a hybrid format. The artworks themselves were thought of as changeable objects to touch, handle and share with the audience. The exhibitory space also changed after Ostensible collective’s intervention, during which their performance was installed and consulted both online and onsite. Local artists or interested audiences were free to intervene in “conversation” with us, as individuals and as a collective group. The desire to open a communication channel with the public, both in presence and online, has been one of the event’s central themes from the beginning. The goal was to alter the role of the observer to elicit active participation from the public, inviting them to join the shared critical thinking and experiences.

In this art show, we wished to challenge the acceptance of survival mode for disabled people, and we confronted the societal ‘toxic positivity’ that forces diverse people to over-perform and ‘feel fine’ even when dealing with pain, fatigue, or mental health disruptions. However, this process of acceptance of our diversity and disability-related difficulties has not always been straightforward or linear. Planning an event lasting several weeks requires a significant amount of work and stress that sometimes collides with these invisible realities, moments of burnout or flair-ups of pain.

Our experience in this journey illustrates the difficulties that disabled people can encounter when they have to follow fixed rules, expectations and systematic mannerisms at the pace of a society that is still profoundly and sometimes unconsciously ableist. These difficulties translated into silence, setbacks and absences and pushed us to adapt to ableist norms. In our case, these difficulties were mitigated by the support of the group, while, in other moments, we learned to accept the risk of “feeling unwell”. Through personal experiences, we also built a further understanding of the additional needs that different bodies and minds need. Especially in low-budget circumstances and in a context of international mobility with no access to pre-existing local personal networks, we understood how vital access to informal networks of help is and how difficult it can be when those networks are not available. We recognized further the importance of practical and emotional collective support and empathy for sustaining these diversities respectfully and, at the same time, how this is at odds with the precarity of the experimental domain of research-art programming and possibilities. While we are highly grateful for the support, including the financial support that we had, we acknowledged that the care-full approach that was our ideological base strictly depends on budget, sponsors, institutional availabilities, and possibilities, which trespasses against our shared ethic of care-community acting and thinking.

We are currently exploring how to move forward from this first experience and how to possibly expand this beginning of shared embodied and experienced “dialogues” in other sites and with other willing colleagues. However, thanks to this experience, we understood budgetary limitations must be considered, questioning what “inclusivity” means, and we now see it as creating a space for attempts, trials, and discussions where we can also face many contradictions, prejudices, and categorizations. Ultimately, this has been a process of learning, acceptance, great teamwork, and a rare experience of deep trust and friendship for us.

How is it possible to understand or feel the ambivalent and challenging experiences associated with (in)visible disabilities? We end this contribution by leaving this question open to the readers of The Polyphony as an invitation to share any comments, experiences, proposals, or new projects we can make or join together through the media. Each of us is individually and collectively ready and open to continue this journey towards different modalities.

About the Authors

Maica Gugolati is a social anthropology researcher focusing on visual and performance studies. She is an affiliated researcher at IMAF and a member of AICA International. Maica is also a co-editor for African Diaspora Journal and Caribbean In-Transit. Her doctoral specialization was in the Caribbean region and the diaspora. Collaborating with artists and authors, she has continued her postdoctoral art-research projects as an artist-researcher and curator exhibiting internationally and contributing to academic and non-academic journals and blogs.

Cinzia Greco is a Wellcome Trust research fellow working at the Centre for the History of Science, Technology and Medicine and the Division of Medical Education at the University of Manchester. A medical anthropologist, she works on the experiences of patients and medical professionals, and specialises in the fields of cancer, medical uncertainty and neurodiversity, as well as in the positionality of the ethnographic method. Her work has appeared in journals such as Medical Anthropology, Anthropology & Medicine, Social Science & Medicine and Journal of Gender Studies. Cinzia is further an associated editor of Anthropologie & Santé.

References

Cole-Turner, Ron. 2022. “Posthumanism and Transhumanism.” In Encyclopedia of Religious Ethics, edited by William Schweiker, 1098-1105. Hoboken, NJ: Wiley.

Garland-Thomson, Rosemarie. 2002. “Integrating Disability, Transforming Feminist Theory.” NWSA Journal, 14, no. 3: 1-32.

Harstock, Nancy. 1983. “The Feminist Standpoint: Developing the Ground for a Specifically Feminist Historical Materialism.” In Discovering Reality, edited by Sandra Harding and Merrell Hintikka, 283-305. Dortrecht: Reidel Publishing.

Hviid, Kirsten, Louise Hardman Smith, Karen Bo Frydendall, and Mari-Ann Flyvholm. 2013. “Visibility and Social Recognition as Psychosocial Work Environment Factors among Cleaners in A Multi-Ethnic Workplace Intervention.” International Journal of Environmental Research and Public Health 10, no. 1: 85-106. doi: 10.3390/ijerph10010085

Mubi Brighenti, Andrea. 2010. Visibility in Social Theory and Social Research. New York: Palgrave Macmillan.

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