"I am just terrified of my future" — Epistemic Violence in Disability Related Technology Research

Technology for disabled people is often developed by non-disabled populations, producing an environment where the perspectives of disabled researchers - particularly when they clash with normative ways of approaching accessible technology - are denigrated, dismissed or treated as invalid. This epistemic violence has manifest material consequences for our lives as disabled researchers engaging with work on our own states of being. Through a series of vignettes, we illustrate our experiences and the associated pain that comes with such engagement as well as the consequences of pervasive dehumanization of ourselves through existing works. Our aim is to identify the epistemic injustice disabled people experience within HCI, to question the epistemological base of knowledge production leading to said injustice and to take ownership of a narrative that all too often is created without our participation.

[1]  Lynn Dombrowski,et al.  "Will I always be not social?": Re-Conceptualizing Sociality in the Context of a Minecraft Community for Autism , 2016, CHI.

[2]  Daniela Karin Rosner,et al.  The Promise of Empathy: Design, Disability, and Knowing the "Other" , 2019, CHI.

[3]  D. Haraway Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective , 1988 .

[4]  D. Marks,et al.  Dimensions of Oppression: Theorising the embodied subject , 1999 .

[5]  Tony Charman,et al.  What should autism research focus upon? Community views and priorities from the United Kingdom , 2014, Autism : the international journal of research and practice.

[6]  Alison M. Jaggar Love and knowledge: Emotion in feminist epistemology , 1989 .

[7]  Christopher Frauenberger,et al.  Participatory Evaluation with Autistic Children , 2017, CHI.

[8]  Christopher Frauenberger,et al.  When Empathy Is Not Enough: Assessing the Experiences of Autistic Children with Technologies , 2017, CHI.

[9]  Sami Schalk,et al.  Developing and Reflecting on a Black Disability Studies Pedagogy: Work from the National Black Disability Coalition , 2015 .

[10]  Kate Swaffer,et al.  'Nothing about us without us!'. , 1993, New Zealand health & hospital.

[11]  Juan E. Gilbert,et al.  “Nothing About Us Without Us” Transforming Participatory Research and Ethics in Human Systems Engineering , 2019, Advancing Diversity, Inclusion, and Social Justice Through Human Systems Engineering.

[12]  José Medina,et al.  Epistemic injustice and epistemologies of ignorance , 2017 .

[13]  Ingunn Moser,et al.  Disability and the promises of technology: Technology, subjectivity and embodiment within an order of the normal , 2006 .

[14]  Jon E. Froehlich,et al.  Autoethnography of a Hard of Hearing Traveler , 2019, ASSETS.

[15]  Christopher Frauenberger,et al.  Agency of Autistic Children in Technology Research—A Critical Literature Review , 2019, ACM Trans. Comput. Hum. Interact..

[16]  Emily M. Lund,et al.  #SaytheWord: A Disability Culture Commentary on the Erasure of “Disability” , 2019, Rehabilitation psychology.

[17]  Daniel P. Kennedy,et al.  Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments , 2017, Scientific Reports.

[18]  Fiona Kumari Anne Campbell Internalised Ableism: The Tyranny Within , 2009 .

[19]  Jennifer Ann Rode,et al.  Reflexivity in digital anthropology , 2011, CHI.

[20]  Nirmala Erevelles,et al.  EDUCATING UNRULY BODIES: CRITICAL PEDAGOGY, DISABILITY STUDIES, AND THE POLITICS OF SCHOOLING , 2000 .

[21]  Marianthi Kourti,et al.  All the weight of our dreams: on living racialised autism , 2018 .

[22]  N. Hodge,et al.  Unruly bodies at conference , 2014 .

[23]  M. Foucault,et al.  Überwachen und Strafen , 2009 .

[24]  Alex Gillespie,et al.  Neurodivergent intersubjectivity: Distinctive features of how autistic people create shared understanding , 2018, Autism : the international journal of research and practice.

[25]  Fiona Kumari Anne Campbell,et al.  Inciting Legal Fictions: 'Disability's' date with Ontology and the Ableist Body of Law , 2001 .

[26]  Jenny Morris,et al.  Pride against Prejudice: Transforming Attitudes to Disability , 1992 .

[27]  LouAnne E. Boyd,et al.  Prefigurative Politics and Passionate Witnessing , 2019, ASSETS.

[28]  Sara Ahmed,et al.  A Complaint Biography , 2019, Biography.

[29]  Gillian R. Hayes,et al.  Disability studies as a source of critical inquiry for the field of assistive technology , 2010, ASSETS '10.

[30]  David I. Hernandez-Saca,et al.  Disability as Psycho-Emotional Disablism: A Theoretical and Philosophical Review of Education Theory and Practice , 2016 .

[31]  Cary Nelson,et al.  Marxism and the Interpretation of Culture , 1990 .

[32]  Fiona Kumari Anne Campbell,et al.  Contours of Ableism: The Production of Disability and Abledness , 2009 .

[33]  Heather Lacey,et al.  Brilliant Imperfection: Grappling with Cure , 2017 .

[34]  Jennifer S Leigh,et al.  Ableism in academia: where are the disabled and ill academics? , 2018 .

[35]  Karen Nakamura,et al.  A Disability of the Soul: An Ethnography of Schizophrenia and Mental Illness in Contemporary Japan , 2013 .

[36]  Murray Edelman,et al.  The Political Language of the Helping Professions , 1974 .

[37]  Markus Schroer,et al.  Michel Foucault: Surveiller et punir. La naissance de la prison, Editions Gallimard: Paris 1975, 318 S. (dt. Überwachen und Strafen. Die Geburt des Gefängnisses, Suhrkamp: Frankfurt 1976, 397 S.) , 2016 .

[38]  Dan Goodley,et al.  Dis/entangling critical disability studies , 2013, Culture - Theory - Disability.

[39]  Sami Schalk,et al.  Bodyminds Reimagined: (Dis)ability, Race, and Gender in Black Women’s Speculative Fiction , 2018 .

[40]  Damian Milton,et al.  On the ontological status of autism: the ‘double empathy problem’ , 2012 .

[41]  M. Foucault,et al.  Überwachen und Strafen. Die Geburt des Gefängnisses , 2016 .

[42]  Kristie Dotson,et al.  Tracking Epistemic Violence, Tracking Practices of Silencing , 2011, Hypatia.

[43]  Jackie Leach Scully,et al.  From ‘‘She Would Say That, Wouldn’t She?’’ to ‘‘Does She Take Sugar?’’ Epistemic Injustice and Disability , 2018 .

[44]  Joyojeet Pal,et al.  CHI4Good or Good4CHI , 2017, CHI Extended Abstracts.

[45]  Kirsty Liddiard,et al.  The Intimate Lives of Disabled People , 2017 .

[46]  H. D. Jaegher,et al.  Embodiment and sense-making in autism , 2013, Front. Integr. Neurosci..

[47]  Therí Alyce Pickens,et al.  Black Madness , 2019 .

[48]  Christine Ashby,et al.  Whose "Voice" is it Anyway?: Giving Voice and Qualitative Research Involving Individuals that Type to Communicate , 2011 .

[49]  Michele C. McDonnall,et al.  Employment and Unemployment Rates of People Who Are Blind or Visually Impaired: Estimates from Multiple Sources , 2019, Journal of Visual Impairment & Blindness.

[50]  M. Fricker FORUM: Miranda FRICKER's Epistemic Injustice. Power and the Ethics of Knowing , 2008, THEORIA.

[51]  Rua Mae Williams,et al.  Metaeugenics and Metaresistance: From Manufacturing the ‘Includeable Body’ to Walking Away from the Broom Closet , 2019, Canadian Journal of Children's Rights / Revue canadienne des droits des enfants.

[52]  Michael Bérubé,et al.  Bending Over Backwards: Disability, Dismodernism and Other Difficult Positions , 2002 .