D OES T HIS D EVICE M AKE M E L OOK H ANDICAPPED ? K ATHERINE D EIBEL U NIVERSITY OF W ASHINGTON H OW NOTIONS OF DISABILITY AND NORMALCY AFFECT TECHNOLOGY USAGE April 7, 2010 Grinnell College

D OES T HIS D EVICE M AKE M E L OOK H ANDICAPPED ? K ATHERINE D EIBEL U NIVERSITY OF W ASHINGTON H OW NOTIONS OF DISABILITY AND NORMALCY AFFECT TECHNOLOGY USAGE April 7, 2010 Grinnell College

Adoption and usage of assistive technologies … technology that supports the activities and lives of people with disabilities Reading disabilities (dyslexia) … physical, cognitive, the sociocultural aspects Social notion of normalcy … what it is and how it shapes our choices in life My dissertation journey 3 April 7, 2010 Grinnell College

Understanding and Supporting the Adoption of Assistive Technologies by Adults with Reading Disabilities 4 Dyslexia Reading sciences Disability Computer-based Reading Human-Computer Interaction Caffeine Identity Privacy StigmaNormalcy Universal Design Values Technology Adoption Abandonment Choice April 7, 2010 Grinnell College

Who I am / My biases Im a scientist I have a sarcastic tendency I have a disability Im transdisciplinary 5 April 7, 2010 Grinnell College

Two confessions 1.I still have not formulated a solid definition of normalcy. 2.I think I just might be normal. 6 April 7, 2010 Grinnell College

T HREAD 1: A SSISTIVE T ECHNOLOGY A DOPTION 7 April 7, 2010 Grinnell College

AT only helps when it is used 8-75% of AT abandoned after purchase (avg. rate is 35%) Waste of time, funds, and resources for all involved Learned helplessness and pessimism 8 April 7, 2010 Grinnell College

Defining AT Success When the participants used BookWise,their mean reading rate increased 25wpm, or 16%,... q Elkind et al., Grinnell College April 7, 2010 Success Likelihood Of Being Used Performance Improvement

What has been the most successful AT ever? 10 Grinnell College April 7, 2010 Eyeglasses Very Less Cane / Crutches Wheelchair Hearing Aids White cane

Eyeglasses correct visual disability! 11 Grinnell College April 7, 2010 Without my monocle I am genetically disadvantaged. Bollocks David Malki, ECCC08 Wondermark

April 7, 2010 Grinnell College 12 History of Eyeglasses China, 1 CE: As eye protection Italy, 1260s: For farsightedness Europe, 1500s: For nearsightedness Britain, 1725: Modern frame invented USA, 1780s: Bifocals invented Britain, 1825: For astigmatisms

Glasses are very disfiguring towomen and girls From a 1901 optician journal Glasses not for public use Used only for brief moments Led to quick use optics monocle ladys lorgnette pince-nez scissor glasses 13 Grinnell College April 7, 2010

Except… Scholars and academics The clergy The Spanish 14 Grinnell College April 7, 2010 T HUS … THE ASSOCIATION OF GLASSES WITH INTELLECTUAL PURSUITS !!!

15 Grinnell College April 7, 2010 Clergy Member Poor Vision Reading Latin Texts +Eyeglasses Continuous Use Aristocrat Poor Vision Reading a Playbill +Eyeglasses Brief Use +In Spain Continuous Use +In Spain Continuous Use

Point of this Historical Sidetrack Technology usage shapes peoples perceptions of the users Culture and society shapes how, when, and if a technology is used 16 Grinnell College April 7, 2010

17 Grinnell College April 7, 2010 Context Technology Person Disability Task

18 Grinnell College April 7, 2010 Context Technology Person Reading Disability Task

T HREAD 2: R EADING D ISABILITIES Grinnell College 19 April 7, 2010

The Start of a Research Interest MSNBC.com article on lack of technology for engineers with dyslexia Began looking into the topic Learned I knew nothing about dyslexia 20 Grinnell College April 7, 2010

What I Believed Dyslexics were mildly retarded / special ed People with dyslexia tend to be of above- average intelligence Dyslexics see letters backwards / upside down Slightly more frequent among people with reading disabilities Likely only if the result is a real word bad dad but not different bifferent 21 Grinnell College April 7, 2010 What I Learned

Ray Ozzies Revelation Creator of Lotus Notes Video: Discussing his work in the early 1970s on PLATO, a computer-assisted instruction system at the University of Illinois 22 Grinnell College April 7, 2010

Prevalence of Reading Disabilities 7-15% of the population have some difficulty with reading Occur in all languages Most common form of disability at 4-year universities in the U.S. 55% of students registered as having a learning disability 23 Grinnell College April 7, 2010

Vast Diversity of Reading Disabilities Letter/Word misrecognition Slower, less fluent reading process Short-term memory issues Visual stress Difficult with linearization of thoughts Visual memory difficulties Strong visuospatial skills Strengths in lateral thinking and creativity 24 Grinnell College April 7, 2010

Two people with dyslexia can be… 25 Grinnell College April 7, 2010 As different as an apple… … and a PC

Reading Assistive Technology Diversity? A few research approaches with software Only two extended efforts in CS literature Commercial products Text-to-speech software More text-to-speech software Okay… a few other products tied in with TTS 26 Grinnell College April 7, 2010

Text-To Speech Text read aloud by a computer Benefits Bypasses letter and word processing deficits Improves reading rate and word identification Requirements Strong auditory skills (10-15% not helped) Digitization of texts / OCR 27 Grinnell College April 7, 2010 Demo

Sanity Check One technology approach Multiple needs of population Is Text-to-Speech successful? 28 Grinnell College April 7, 2010 Success Likelihood Of Being Used Performance Improvement

Usage by Adults and College Students Longitudinal study by Elkind (1996) 50% abandonment rate among 8 adults Dan Comden (UW) Little evidence for long-time usage among UW students with disabilities Karen McRitchie (Grinnell) Non-usage of Kurzweil Grinnell College April 7, 2010

Insights about the lack of usage Artificial nature of computer speech Questionable effectiveness Time and effort needed to scan texts Monetary expense When and where it can be used Access to scanner Public places 30 Grinnell College April 7, 2010

A story of a girl with dyslexia… 31 Grinnell College April 7, 2010 A pair of headphones… and a computer lab

32 Grinnell College April 7, 2010 Would text-to-speech be used in a…. …lecture hall? …library? …study group? …in a dorm room with a roommate? …in a dorm room alone?

The Intel Reader 33 Grinnell College April 7, 2010

The Intel Reader Bulky Camera with flash Specialized piece of hardware Where would it be used? And why or why not? 34 Grinnell College April 7, 2010

T HREAD 3: S OCIETY AND D ISABILITY Grinnell College 35 April 7, 2010

Janice Edwards Eight dyslexia success stories Revelation of childhoods of: Self-doubt Depression Feelings of isolation Teasing from peers Abuse from teachers Expectations to fail Defeatism Reluctance to continue education despite admission to universities 36 Grinnell College April 7, 2010

Rebecca Cory Disability coordinator North Seattle CC Dissertation Identity, Support And Disclosure: Issues Facing University Students With Invisible Disabilities Students with invisible disabilities often attempt to hide as normal Avoid disability stigma Limit knowledge to trusted others Delay asking for help until crisis necessitates it 37 Grinnell College April 7, 2010

The Acquisition of a Child by a Learning Disability McDermott (1993) 8 year old Adam Four different reading scenarios Different levels of awareness of Adams disability by others Worse performance with greater awareness 38 Grinnell College April 7, 2010 Testing Sessions Classroom Lessons Cooking Clubs Everyday Life

Wiccy-Ticcy Ray Case study by Oliver Sacks Tourettes Syndrome Only takes meds Monday-Thursday Dedicated, staid worker during work week Vibrant, improvisational drummer on weekends 39 Grinnell College April 7, 2010

Stephen Kuusisto Poet (attended Iowa Writers Workshop) Blind due to premature birth Both he and his parents actively disavowed his blindness Rode a bicycle until his 20s Fulbright Scholar in Finland Mobility training in his early 30s Guide dog in his mid 30s 40 Grinnell College April 7, 2010

Barry, Iowa Commission for the Blind Adviser to Stephen Kuusisto They grab your arm without asking, try to hustle you across like a Secret Service agent shoving the president. Its weird and fantastically annoying. Theyve made the assumption that blindness is a mental condition. Those are the same people who talk to your friends in restaurants, you know, waiters who take everyone elses order, then pause, look at the blind guy, and say to the assembled sighted folks, And what will he be having? That stuff can drive you nuts! Or the assume that because youre blind, you cant hear, and they shout at you. 41 Grinnell College April 7, 2010

Barry, Iowa Commission for the Blind Adviser to Stephen Kuusisto But you know what? I wouldnt trade any of that away for the struggle that youre living in. For you, when you do tell some fucked-up professor you cant seewell, that becomes a struggle because they dont understand how someone without a cane or dog can be blind. And of course, its none of their fucking business whether you use the cane or not, I know that. But in terms of your safety, and your general ease of passage through the world, I can tell you, it makes a real difference to use the damned thing. 42 Grinnell College April 7, 2010

Chronicle of Higher Education Articles from college professors Accusation that students with LDs may be lying or committing fraud Williams & Ceci. Accommodating learning disabilities can bestow unfair advantages Zirkel. Sorting out which students have learning disabilities Grinnell College April 7, 2010

Multiple literature disciplines Education, Reading Sciences, Disability Studies, Memoirs, Technology Adoption, Computer Science, Sociology, Assistive Technologies, Medicine Multiple social issues Fairness, Choice, Privacy, Respect, Trust, Identity, Community, Belonging, Shame, Laws, Opportunity, Support, Diagnosis, Perfection, Technologization, Diversity 44 Grinnell College April 7, 2010

Value-Sensitive Design Methodology for including and incorporating human and societal values throughout the design process Developed by Batya Friedman Wide view of (in)direct technology stakeholders Multidisciplinary Tripartite Methodology Conceptual: Philosophy / Law Empirical: Social sciences Technical: Engineering Applications in urban-planning, open-source, conservation 45 Grinnell College April 7, 2010 Conceptual Investigation Empirical Investigation Technical Investigation

46 Grinnell College April 7, 2010 AccessNormalcyRespectChoiceIdentityEmpowermentAutonomyTrustPrivacyCommunityFairnessLiteracy Access to Life Medical Model Social Model Self-Advocacy Success in Life Support Faculty Support Support Failure Stigma Embarrassment & Ridicule Invisibility & Disclosure Diffusion of Innovations AT Adoption Human Factors Values Themes from Literature

Value: Privacy Definition: The right of a person to determine what information about him or herself is communicated to others Literature: Cory. Identity, Support And Disclosure: Issues Facing University Students With Invisible Disabilities Edwards. The Scars of Dyslexia: Eight case studies in emotional reactions McDermott. The Acquisition of a Child by a Learning Disability Grinnell College April 7, 2010

48 Grinnell College April 7, 2010 Value: Community Definition: Sense of belonging to a group of people due to sharing a common set of attributes (e.g., locality, ethnicity, ability, etc.) and the ability of the group to act as a single entity for its own betterment Literature: Cory. Identity, Support And Disclosure: Issues Facing University Students With Invisible Disabilities Gerber et al. Identifying alterable patterns in employment success for highly successful adults with learning disabilities Rogers. Diffusion of Innovations

Value: Fairness Definition: The belief that all individuals should be treated favourably and that reasonable steps should be made to ensure that all persons have an opportunity to succeed in life Literature: Charlton. Nothing about us without us: Disability oppression and empowerment Williams & Ceci. Accommodating learning disabilities can bestow unfair advantages Zirkel. Sorting out which students have learning disabilities Grinnell College April 7, 2010

T HREAD 4: N ORMALCY Grinnell College 50 April 7, 2010

Defining Normalcy Previous concept of the unreachable ideal Entered English language around 1860 Result of industrial, medicine, and science revolutions Based on notions of statistics Associated concepts ConformityIsolation RejectionSameness 51 Grinnell College April 7, 2010

The Good of Normalcy Statistical averages and ranges guide Medicine Science Engineering Normal behavior is an aspect of civilization Not normal to kill and/or eat ones neighbors Not normal to steal from others Motivation to improve Move from normal to ideal 52 Grinnell College April 7, 2010

The Bad of Normalcy Lack of a shared, unchanging definition Like Justice Stewarts definition of pornography I know it when I see it Conflicting notions of worth Normal people are not successes, beautiful, intelligent, etc. Normal people are healthy, smart, happy, etc. Pithy, worthless statements of diversity Were all the same in that we are all different. 53 Grinnell College April 7, 2010

Normalcy An individuals conception of what the qualities and abilities (physical, mental, emotional, etc.) of other members of society are and how it compares to the individuals own qualities and abilities. 54 Grinnell College April 7, 2010

Jonathan Mooney Severe dyslexia and ADHD Graduated with honors in literature from Brown Decided at age 12 to only be a popular jock soccer player He did not overcome his disability He is not normal He learns and thinks differently but that is not his fault 55 Grinnell College April 7, 2010 NORMAL PEOPLE SUCK!

Case Studies 11 interviews with adults with RDs / LDs 1 previous interview from earlier study 1 pilot interview 7 interviews 2 in the near future Discussions of their upbringing, how disability has shaped their lives, the roles of reading and technology in their daily lives Interpreted through a value framework 56 Grinnell College April 7, 2010

Kellie Successful web comic artist Has had to address her poor spelling: So if anyone wants to tell me that I can't spell and to enlighten me on the wonders of a new and fun invention called a dictionary or spell check then I would be overjoyed to tell them… words of condolence, apology, ridicule or support are unwanted and unneeded Advocates for and inspires others with dyslexia Admits she only does so as she cannot hide 57 Grinnell College April 7, 2010

Nigel Graphic design / 3D modeling Raised in Britain Views self as lucky Parents could afford good schooling for him Brother was unable to have same schooling Less visibly affected than schoolmates Avoids telling employers about his dyslexia 58 Grinnell College April 7, 2010

W OVEN C LOTH : D YSLEXIA, T ECHNOLOGY A DOPTION, AND W ORKING WITH N ORMALCY Grinnell College 59 April 7, 2010

Sad Conclusion: Assistive technologies for adults with reading disabilities are unlikely to be adopted Reasons: Preference to hide Normal not to struggle with reading Association of ability with literacy skills Negative past experiences Want to overcome disability and past 60 Grinnell College April 7, 2010

Diffusion of Innovations by Everett Rogers Model for adoption of technologies / ideas in a community / society Knowledge and adoption of technologies are guided by communication networks and visibility of use 61 Grinnell College April 7, 2010

62 Grinnell College April 7, 2010 Diffusion of Innovations by Everett Rogers Model for adoption of technologies / ideas in a community / society Knowledge and adoption of technologies are guided by communication networks and visibility of use Some people are more influential than others

People with reading disabilities tend to tactically hide disability from others Stealth AT usage slows diffusion Social network of users is sparse Disclosure of disability also uncertain Without visible users of ATs for reading, technology diffusion will be slow or fail 63 Grinnell College April 7, 2010

64 Grinnell College April 7, 2010 Context Technology Person Reading Disability Task

65 Grinnell College April 7, 2010 Context Technology Person Reading Disability Hiding Reading Problems And Help with Reading

66 Grinnell College April 7, 2010 Context: Everyone uses the same technology Technology Person Reading Disability Help with Reading

Calico: Reading Tool General purpose reading support software Contains add-on tools to support variety of reading tasks One tool is secretly a meta-tool Performs reading assessments Recommends specific tools based on assessments Users with RDs choose the level at which to hide 67 Grinnell College April 7, 2010

This is inclusive education and universal design Helps behind the scenes Technology supports all readers General populace drives diffusion 68 Grinnell College April 7, 2010

L OOSE E NDS Grinnell College 69 April 7, 2010

Untouched Topics of My Dissertation Why have text-to-speech technologies been the focus for so long? What else do the interviews reveal? Will Calico work? Are there other solutions? 70 Grinnell College April 7, 2010

Open Questions What is the role of normalcy in technology usage for other disability types? Does normalcy affect technology usage among the general population? 71 Grinnell College April 7, 2010

Concluding Thoughts Everyday, I see other people. I compare myself to them. That is normal. I find myself lacking in comparison to many. That is normal. I wonder what it means to be normal. I wonder what normal means. Damn it, I might just be a normal person after all. Are you normal? 72 Grinnell College April 7, 2010

Grinnell College 73 Thanks Acknowledgments: Grinnell College, Janet Davis, Henry Walker, Karen McRitchie, Ken Yasuhara, Sheryl Burgstahler, Kurt, Jonathan, Rebecca, and so many many more great people. For more information, please contact Kate Deibel

74 Grinnell College April 7, 2010