Cripping Collaboration: Science Fiction and the Access to Disability Worlds

ABSTRACT

Inclusive participatory approaches strive to make participants with mild intellectual disabilities (MID) co-researchers. However, academic standards of knowledge production and the need for cognitive skills can complicate collaboration. I argue that collaboration with people with disabilities is not about efforts of inclusion, but instead, it is our methodologies that need to be “cripped.” This means moving away from the ideal of inclusion, toward a more interdependent and relational understanding of access and collaboration. This multimodal article shows how my “research subject” Olof and I explored this way of working together by describing the coproduction of the science-fiction film “O.”

DUTCH ABSTRACT

Onderzoekers streven naar de inclusie en participatie van mensen met licht verstandelijke beperkingen (LVB) in onderzoeksactiviteiten, vaak door ze mede-onderzoeker te maken. Tegelijkertijd maken academische normen en de cognitieve eisen van het onderzoekswerk de samenwerking met mensen met een LVB in wetenschappelijke praktijken moeilijk. In dit artikel beargumenteer ik dat samenwerking met mensen met een handicap geen kwestie is van inclusie in een set van normen die niet bij ze passen. In plaats daarvan moeten onze methodologieën “gecripped” worden. Dat betekent dat we op zoek moeten naar een meer relationeel begrip van samenwerking, waarin ieders sterke punten en beperkingen ruimte kunnen krijgen. Met dit multimodale artikel laat ik zien hoe mijn “onderzoekssubject” Olof en ik hiermee aan de slag zijn gegaan door samen te werken aan de science-fiction film “O.”

KEYWORDS:

• Collaboration
• crip theory
• ethnography
• intellectual disability
• science fiction
• visual anthropology

KEYWORDS:

• Crip-theorie
• etnografie
• licht verstandelijke beperking
• participatie
• science-fiction
• visuele antropologie

Acknowledgments

This article could never have been written without my partner in science-fiction Olof ten Have. I owe this project to his creativity and enthusiasm, that have been an inspiration throughout my PhD trajectory.

I further owe this project to my wonderful friends Sjuul Joosen, Annemarije Rus, Pieter van Vliet, and Anouk van Klaveren and their expertise in art, film-making and science fiction.

This article could not have been written without the brilliant input of my supervisors Jeannette Pols, Kristine Krause and Martha Dietrich. A further thanks to our whole “hanging-out-crew”, in particular to Helena Cleeve, for so attentively commenting on my work.

I further thank my friend Madina Dyussembayeva for her support from afar. Your emails and comments helped me push my thinking and this article forward.

I also want to thank the two anonymous reviewers for their generous and generative comments.

Finally, an enormous thanks to the loves of my life Paul, Bowie and Arie for being my perfect aliens, and for being there with me throughout writing this article.

Disclosure statement

No potential conflict of interest was reported by the author.

Notes

1. I join critical disability scholars in understanding disability as a relational and political category (Kafer 2013). This also brings a critique on pathologizing labels, and a need for clarification on the use of them. Throughout this article, I refer to “MID” as a name for an experience, and “people with MID” as a name for a perceived demographic category (following Kasnitz 2020: 18).

2. Many people with MID in Amsterdam live independently in their own apartments. This is why social care organizations focusing on people with MID are often community-based organizations that operate on a “street-level.” As a volunteer, I am involved in organizing public events for people with disabilities, such as communal dinners, sport events, or cultural activities.

3. Trying to overcome these barriers, inclusive strategies have come up with research designs that invest in training researchers with MID in scientific practices such as writing, interviewing, presenting and communicating with other researchers (see: Embregts et al. 2018; Sergeant et al. 2021). But other inclusive researchers have questioned if participation in every stage of research is possible, or even desirable (Walmsley and Johnson 2003, Bigby et al. 2014; Gilbert 2014: 33).

4. such as Alison Kafer, Margareth Price, Stephany Kerschbaum, Aimi Hamraie, Kelly Fritsch, and Mia Mingus.

5. As a noun, crip refers to an identity term that represents the activist reclamation of the word cripple (McRuer 2018: 18–19). As a verb, “to crip” refers to a process that unsettles normative understandings of disability and radically reimagines “conceptual boundaries, relationships, communities, cultural representations and power structures” (Hutcheon and Wolbring 2013: 1). Closely related to the verb queering, to crip something means to spin around “mainstream representations or practices to reveal able-[body-minded] assumptions and exclusionary effects” (Sandahl 2003: 37).

6. This is also why Olof does not feature as the coauthor of this text. The whole point of this project was to do something other than text together. Therefore, I did not want to expire in symbolic attributions that do not relate to the reality of our collaboration. Writing academic articles about the lessons we learned from making our film is my job, not Olof’s.

7. https://www.urbandictionary.com/define.php?term=Noob.

8. Next to Sjuul, this project could not have been realized without the help of my friends Annemarije Rus, Paul de Jong, Pieter van Vliet and Anouk van Klaveren. Visit their websites here: https://www.annemarijerus.nl/; https://www.jongdepaul.nl/; https://debescheidenheid.nl/; https://cargocollective.com/anoukvanklaveren.

9. Sjuul Joosen is an artist based in the Hague His artwork is characterized by an authentic do-it-yourself mentality and a fascination for the hidden aspects of natural phenomena. Moreover, Sjuul has been working on his own independent science fiction film “Tijdjager” (Timechaser, workingtitle) since 2016. In this ongoing project, Sjuul fulfills almost all the roles necessary to produce a film: screenwriter, camera operator, editing, special effect making, and animator (www.sjuuljoosen.nl).

10. For more information about this crowdfunding check out our project page here: https://www.voordekunst.nl/projecten/12765-o-de-post-productie-1.

11. In research and care for people with MID, we see this extraction happening through use of the term “developmental age.” This term refers to a kind of age that corresponds with people’s IQs and social-emotional development. According to development psychology, this conception of age reflects that people with MID function at a level lower than expected considering their calendar age. They say: while this person is 64 years old, their disability makes them function at the level of a 6- to a 12-year-old child (emotionally, socially or cognitively). While the concept of developmental age was meant to help practitioners to attune to the needs of people with MID there has been lots of critique on the use of this term within critical disability studies.

12. https://open.overheid.nl/repository/ronl-a7e6f4b4-de5d-4dff-9815–6696fa895d48/1/pdf/kamerbrief-over-nieuwe-prognose-verwachte-personeelstekort.pdf.

13. Of course care is not always good as strivings for the good can have good and bad effects (see Pols 2015).

Additional information

Funding

The research on which this article is based was funded by a talent grant of the Dutch Research Council (NWO), grant number Nr. 40618510 under the title “Access Denied. How diagnostic categories work in negotiating care for people with learning disabilities”.

Notes on contributors

Leonie Dronkert

Leonie Dronkert is a PhD researcher at the University of Amsterdam working on access to care – or the lack of it – for people with intellectual disabilities. Together with Olof ten Have she is currently editing the Science Fiction film (and the ‘Making of) the film ‘O’. Her puzzle is how to make everything fit into her PhD thesis.