Living Disability Theory: Reflections on Access, Research, and Design

Accessibility research and disability studies are intertwined fields focused on, respectively, building a world more inclusive of people with disability and understanding and elevating the lived experiences of disabled people. Accessibility research tends to focus on creating technology related to impairment, while disability studies focuses on understanding disability and advocating against ableist systems. Our paper presents a reflexive analysis of the experiences of three accessibility researchers and one disability studies scholar. We focus on moments when our disability was misunderstood and causes such as expecting clearly defined impairments. We derive three themes: ableism in research, oversimplification of disability, and human relationships around disability. From these themes, we suggest paths toward more strongly integrating disability studies perspectives and disabled people into accessibility research.

[1]  Mariam Asad,et al.  Prefigurative Design as a Method for Research Justice , 2019, Proc. ACM Hum. Comput. Interact..

[2]  Alison Kafer,et al.  Feminist, Queer, Crip , 2013 .

[3]  Christopher Frauenberger,et al.  Disability and Technology: A Critical Realist Perspective , 2015, ASSETS.

[4]  Donna Harawy.  Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective , 2022, Philosophical Literary Journal Logos.

[5]  Anne Marie Piper,et al.  Weaving by Touch: A Case Analysis of Accessible Making , 2020, CHI.

[6]  Tara J. Yosso,et al.  Critical Race Methodology: Counter-Storytelling as an Analytical Framework for Education Research , 2002 .

[7]  Susan Wendell,et al.  The Rejected Body: Feminist Philosophical Reflections on Disability , 1996 .

[8]  K. Alexanderson,et al.  Gender differences in experiencing negative encounters with healthcare: A study of long-term sickness absentees , 2007, Scandinavian journal of public health.

[9]  Predrag V. Klasnja,et al.  Taking our Time: Chronic Illness and Time-Based Objects in Families , 2015, CSCW.

[10]  Kelly M. Hoffman,et al.  Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites , 2016, Proceedings of the National Academy of Sciences.

[11]  Aimi Hamraie,et al.  Designing Collective Access: A Feminist Disability Theory of Universal Design , 2013 .

[12]  Alex S. Taylor,et al.  "I can do everything but see!" -- How People with Vision Impairments Negotiate their Abilities in Social Contexts , 2018, CHI.

[13]  Wanda Pratt,et al.  Designing a Reclamation of Body and Health: Cancer Survivor Tattoos as Coping Ritual , 2018, CHI.

[14]  R. Glazier.  The "Re-Invention" of Personal Assistance Services , 2001 .

[15]  Madhu Reddy,et al.  Understanding Mental Ill-health as Psychosocial Disability: Implications for Assistive Technology , 2019, ASSETS.

[16]  Jina Huh,et al.  Health Vlogs as Social Support for Chronic Illness Management , 2014, ACM Trans. Comput. Hum. Interact..

[17]  Juan E. Gilbert,et al.  Cyborg Perspectives on Computing Research Reform , 2019, CHI Extended Abstracts.

[18]  M. Mills,et al.  Disability, Bias, and AI , 2019 .

[19]  Nirmala Erevelles,et al.  Unspeakable Offenses: Untangling Race and Disability in Discourses of Intersectionality , 2010 .

[20]  C. Brid Nicholson,et al.  Crip Theory: Cultural Signs of Queerness and Disability , 2006 .

[21]  W. Keith Edwards,et al.  Intersectional HCI: Engaging Identity through Gender, Race, and Class , 2017, CHI.

[22]  R. Street.  Gender differences in health care provider-patient communication: are they due to style, stereotypes, or accommodation? , 2002, Patient education and counseling.

[23]  Anne Marie Piper,et al.  "Tell It Like It Really Is": A Case of Online Content Creation and Sharing Among Older Adult Bloggers , 2016, CHI.

[24]  Devva Kasnitz.  The Politics of Disability Performativity , 2020, Current Anthropology.

[25]  Kristen Shinohara,et al.  Observing Sara: a case study of a blind person's interactions with technology , 2007, Assets '07.

[26]  Karen Nakamura,et al.  My Algorithms Have Determined You're Not Human: AI-ML, Reverse Turing-Tests, and the Disability Experience , 2019, ASSETS.

[27]  Stacy M. Branham,et al.  "That's the Way Sighted People Do It": What Blind Parents Can Teach Technology Designers About Co-Reading with Children , 2019, Conference on Designing Interactive Systems.

[28]  Howard Waitzkin,et al.  Differences in clinical communication by gender , 1999, Journal of General Internal Medicine.

[29]  Mark S. Ackerman,et al.  Collaborative help in chronic disease management: supporting individualized problems , 2012, CSCW.

[30]  Shaowen Bardzell,et al.  Feminist HCI: taking stock and outlining an agenda for design , 2010, CHI.

[31]  Anne Marie Piper,et al.  A Critical Lens on Dementia and Design in HCI , 2017, CHI.

[32]  Jakita O. Thomas,et al.  Straighten up and fly right , 2019, Interactions.

[33]  Leslie S. Liu,et al.  "I'm Not Like My Friends": Understanding How Children with a Chronic Illness Use Technology to Maintain Normalcy , 2015, CSCW.

[34]  Lynn Dombrowski,et al.  Social Justice-Oriented Interaction Design: Outlining Key Design Strategies and Commitments , 2016, Conference on Designing Interactive Systems.

[35]  Halley P. Profita,et al.  Nothing to Hide: Aesthetic Customization of Hearing Aids and Cochlear Implants in an Online Community , 2016, ASSETS.

[36]  Russell Shuttleworth,et al.  What's so ‘critical’ about critical disability studies? , 2009 .

[37]  C. Sandahl.  Queering the Crip or Cripping the Queer?: Intersections of Queer and Crip Identities in Solo Autobiographical Performance , 2003 .

[38]  Gillian R. Hayes,et al.  Would You Be Mine: Appropriating Minecraft as an Assistive Technology for Youth with Autism , 2016, ASSETS.

[39]  Jennifer Ann Rode,et al.  Competing Online Viewpoints and Models of Chronic Illness , 2011 .

[40]  Angela D. R. Smith,et al.  Critical Race Theory for HCI , 2020, CHI.

[41]  Zach Coble,et al.  Moving from Independence to Interdependence: A Conceptual Model for Better Understanding Community Participation of Centers for Independent Living Consumers , 2010 .

[42]  Sins Invalid,et al.  Skin, Tooth, and Bone – The Basis of Movement is Our People: A Disability Justice Primer , 2017, Reproductive health matters.

[43]  Jacob O. Wobbrock,et al.  In the shadow of misperception: assistive technology use and social interactions , 2011, CHI.

[44]  L. Suchman.  Agencies in Technology Design: Feminist Reconfigurations* , 2020, Machine Ethics and Robot Ethics.

[45]  Rosemarie Garland-Thomson,et al.  Integrating Disability, Transforming Feminist Theory , 2002, Feminist Theory Reader.

[46]  Ellen Samuels,et al.  My Body, My Closet: Invisible Disability and the Limits of Coming-Out Discourse , 2003 .

[47]  Danilyn Rutherford,et al.  Disability Worlds , 2020, Current Anthropology.

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

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

[50]  Richard L Street,et al.  How clinician-patient communication contributes to health improvement: modeling pathways from talk to outcome. , 2013, Patient education and counseling.

[51]  O WobbrockJacob,et al.  Self-Conscious or Self-Confident? A Diary Study Conceptualizing the Social Accessibility of Assistive Technology , 2016 .

[52]  Anne Marie Piper,et al.  MyAutsomeFamilyLife: Analyzing Parents of Children with Developmental Disabilities on YouTube , 2019, Proc. ACM Hum. Comput. Interact..

[53]  Patrick Olivier,et al.  Designing for mental wellbeing: towards a more holistic approach in the treatment and prevention of mental illness , 2015, BCS HCI.

[54]  Munmun De Choudhury,et al.  Detecting and Characterizing Mental Health Related Self-Disclosure in Social Media , 2015, CHI Extended Abstracts.

[55]  Meredith Ringel Morris,et al.  Sign Language Recognition, Generation, and Translation: An Interdisciplinary Perspective , 2019, ASSETS.

[56]  Halley Profita,et al.  The AT Effect: How Disability Affects the Perceived Social Acceptability of Head-Mounted Display Use , 2016, CHI.

[57]  Judith Good,et al.  "I am just terrified of my future" — Epistemic Violence in Disability Related Technology Research , 2020, CHI Extended Abstracts.

[58]  David DeIuliis.  Disability Rhetoric , 2016 .

[59]  D. Hoffmann,et al.  The girl who cried pain: a bias against women in the treatment of pain. , 2001, The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics.

[60]  Gillian R. Hayes,et al.  (In)Visibility in Disability and Assistive Technology , 2017, ACM Trans. Access. Comput..

[61]  Daniela Karin Rosner,et al.  Making Core Memory: Design Inquiry into Gendered Legacies of Engineering and Craftwork , 2018, CHI.

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

[63]  Ellen Samuels,et al.  Fantasies of Identification: Disability, Gender, Race , 2014 .

[64]  Tom Yeh,et al.  Defining Problems of Practices to Advance Inclusive Tactile Media Consumption and Production , 2019, ASSETS.

[65]  S. Linton,et al.  Claiming Disability: Knowledge and Identity , 1998 .

[66]  Erin Brady,et al.  Interdependence as a Frame for Assistive Technology Research and Design , 2018, ASSETS.

[67]  Joel E. Fischer,et al.  Reframing Disability as Competency: Unpacking Everyday Technology Practices of People with Visual Impairments , 2020, CHI.

[68]  Scott E. Hudson,et al.  "Occupational Therapy is Making": Clinical Rapid Prototyping and Digital Fabrication , 2019, CHI.

[69]  Daniela Karin Rosner,et al.  Biographical Prototypes: Reimagining Recognition and Disability in Design , 2019, Conference on Designing Interactive Systems.

[70]  Darren E Lund,et al.  Duoethnography : Dialogic Methods for Social, Health, and Educational Research , 2016 .

[71]  Daniela Karin Rosner,et al.  An Intimate Laboratory?: Prostheses as a Tool for Experimenting with Identity and Normalcy , 2016, CHI.

[72]  Kim Q. Hall.  Feminist disability studies , 2011 .

[73]  Cynthia L. Bennett,et al.  The Care Work of Access , 2020, CHI.

[74]  Alise de Bie,et al.  Care work: dreaming disability justice , 2019, Disability & Society.