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Grinnell College
DOES THIS DEVICE MAKE ME LOOK HANDICAPPED?
KATHERINE DEIBELUNIVERSITY OF WASHINGTON
HOW NOTIONS OF DISABILITY AND NORMALCY AFFECT
TECHNOLOGY USAGE
April 7, 2010
Grinnell College
DOES THIS DEVICE MAKE ME LOOK HANDICAPPED?
KATHERINE DEIBELUNIVERSITY OF WASHINGTON
HOW NOTIONS OF DISABILITY AND NORMALCY AFFECT
TECHNOLOGY USAGE
DisabledGimpyLame
Like A FreakRetardedMoronicStupidSpastic
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Adopti on and usage of assisti ve technologies
… technology that supports the acti viti es and lives of people with disabiliti es
Reading disabiliti es (dyslexia)
… physical, cogniti ve, the sociocultural aspects
Social noti on of normalcy
… what it is and how it shapes our choices in life
My dissertati on journey
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Understanding and Supporti ng the Adopti on of Assisti ve Technologies by Adults with Reading Disabiliti es
Dyslexia
Reading sciences
Disability
Computer-based Reading
Human-Computer Interaction
Caffeine
Identity
Privacy
Stigma Normalcy
Universal Design
Values
Technology Adoption
Abandonment
Choice
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Who I am / My biases
I’m a scienti st I have a sarcasti c tendency I have a disability I’m transdisciplinary
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Two confessions
1. I sti ll have not formulated a solid defi niti on of normalcy.
2. I think I just might be normal.
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THREAD 1:ASSISTIVE TECHNOLOGY ADOPTION
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AT only helps when it is used
8-75% of AT abandoned aft er purchase (avg. rate is 35%)
Waste of ti me, funds, and resources for all involved
Learned helplessness and pessimism
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Defining AT Success
“When the parti cipants used BookWise, “their mean reading rate increased 25 “wpm, or 16%, ...” q Elkind et al., 1996
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Success Likelihood Of Being Used
Performance Improvement
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What has been the most successful AT ever?
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EyeglassesVery
Less
Cane / Crutches
Wheelchair
Hearing Aids
White cane
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Eyeglasses correct visual disability!
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Without my monocle I am genetically disadvantaged.
Bollocks
David Malki, ECCC08Wondermark http://wondermark.com
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History of Eyeglasses
China, ≈1 CE: As eye protecti on
Italy, 1260s: For farsightedness
Europe, 1500s: For nearsightedness
Britain, 1725: Modern frame invented
USA, 1780s: Bifocals invented
Britain, 1825: For asti gmati sms
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“Glasses are very disfi guring to “women and girls”
From a 1901 opti cian journal
Glasses not for public use
Used only for brief moments
Led to quick use opti cs monocle lady’s lorgnett e pince-nez scissor glasses
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Except…
Scholars and academics The clergy The Spanish
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THUS… THE ASSOCIATION OF GLASSES WITH INTELLECTUAL
PURSUITS!!!
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Clergy MemberPoor Vision
Reading Latin Texts+ Eyeglasses
Continuous Use
AristocratPoor Vision
Reading a Playbill+ Eyeglasses
Brief Use
+ In SpainContinuous Use
+ In SpainContinuous Use
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Point of this Historical Sidetrack
Technology usage shapes people’s percepti ons of the users
Culture and society shapes how, when, and if a technology is used
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Context
Technology
Person
Disability
Task
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Context
Technology
Person
Reading Disability
Task
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THREAD 2: READING DISABILITIES
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The Start of a Research Interest
MSNBC.com arti cle on lack of technology for engineers with dyslexia
Began looking into the topic
Learned I knew nothing about dyslexia
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What I Believed Dyslexics were mildly retarded / special ed
People with dyslexia tend to be of above-average intelligence
Dyslexics see lett ers backwards / upside down
Slightly more frequent among people with reading disabiliti es
Likely only if the result is a real word
bad → dad but not diff erent → biff erent
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What I Learned
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Ray Ozzie’s Revelation
Creator of Lotus Notes Video:
Discussing his work in the early 1970s on PLATO, a computer-assisted instructi on system at the University of Illinois
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Prevalence of Reading Disabilities
7-15% of the populati on have some diffi culty with reading
Occur in all languages Most common form of disability at 4-year universiti es in the U.S.
55% of students registered as having a learning disability
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Vast Diversity of Reading Disabilities Lett er/Word misrecogniti on Slower, less fl uent reading process Short-term memory issues Visual stress Diffi cult with linearizati on of thoughts Visual memory diffi culti es Strong visuospati al skills Strengths in lateral thinking and creati vity
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Two people with dyslexia can be…
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As different as an apple…
… and a PC
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Reading Assistive Technology Diversity?
A few research approaches with soft ware
Only two extended eff orts in CS literature
Commercial products
Text-to-speech soft ware
More text-to-speech soft ware
Okay… a few other products ti ed in with TTS
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Text-To Speech
Text read aloud by a computer Benefi ts Bypasses lett er and word processing defi cits
Improves reading rate and word identi fi cati on
Requirements
Strong auditory skills (10-15% not helped)
Digiti zati on of texts / OCR
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Demo
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Sanity Check
One technology approach Multi ple needs of populati on
Is Text-to-Speech successful?
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Success Likelihood Of Being Used
Performance Improvement
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“Usage” by Adults and College Students
Longitudinal study by Elkind (1996)
50% abandonment rate among 8 adults Dan Comden (UW)
Litt le evidence for long-ti me usage among UW students with disabiliti es
Karen McRitchie (Grinnell)
Non-usage of Kurzweil 3000
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Insights about the lack of usage
Arti fi cial nature of computer speech Questi onable eff ecti veness Time and eff ort needed to scan texts Monetary expense When and where it can be used Access to scanner Public places
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A story of a girl with dyslexia…
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A pair of headphones…
and a computer lab
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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?
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The Intel Reader
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The Intel Reader
Bulky Camera with fl ash Specialized piece of hardware
Where would it be used?
And why or why not?
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THREAD 3: SOCIETY AND DISABILITY
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Janice Edwards Eight dyslexia “success” stories
Revelati on of childhoods of: Self-doubt Depression Feelings of isolati on Teasing from peers Abuse from teachers Expectati ons to fai l Defeati sm
Reluctance to conti nue educati on despite admission to universiti es
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Rebecca Cory Disability coordinator North Seatt le CC
Dissertati on Identi ty, Support And Disclosure: Issues Facing University Students With Invisible Disabiliti es
Students with invisible disabiliti es oft en att empt to hide as “normal” Avoid disability sti gma Limit knowledge to trusted others Delay asking for help unti l crisis necessitates it
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The Acquisiti on of a Child by a Learning DisabilityMcDermott (1993)
8 year old Adam
Four diff erent reading scenarios
Diff erent levels of awareness of Adam’s disability by others
Worse performance with greater awareness
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Testing Sessions
Classroom Lessons
Cooking Clubs
Everyday Life
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Wiccy-Ticcy Ray
Case study by Oliver Sacks
Tourett e’s Syndrome
Only takes meds Monday-Thursday
Dedicated, staid worker during work week
Vibrant, improvisati onal drummer on weekends
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Stephen Kuusisto Poet (att ended Iowa Writers’ Workshop)
Blind due to premature birth
Both he and his parents acti vely disavowed his blindness
Rode a bicycle unti l his 20s
Fulbright Scholar in Finland
Mobility training in his early 30s
Guide dog in his mid 30s
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Barry, Iowa Commission for the BlindAdviser to Stephen KuusistoThey grab your arm without asking, try to hustle you across l ike a Secret Service agent shoving the president. It ’s weird and fantasti cally annoying. They ’ve made the assumpti on that blindness is a mental conditi on. Those are the same people who talk to your friends in restaurants, you know, waiters who take everyone else’s 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 you’re blind, you can’t hear, and they shout at you.
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Barry, Iowa Commission for the BlindAdviser to Stephen KuusistoBut you know what? I wouldn’t trade any of that away for the struggle that you’re l iving in. For you, when you do tell some fucked-up professor you can’t see—well, that becomes a struggle because they don’t understand how someone without a cane or dog can be blind. And of course, it ’s 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 diff erence to use the damned thing.
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Chronicle of Higher Educati on Arti cles from college professors
Accusati on that students with LDs may be lying or committi ng fraud
Williams & Ceci. “Accommodati ng learning disabiliti es can bestow unfair advantages.” 1999.
Zirkel. “Sorti ng out which students have learning disabiliti es.” 2000.
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Multi ple literature disciplines Educati on, Reading Sciences, Disability
Studies, Memoirs, Technology Adopti on, Computer Science, Sociology, Assisti ve Technologies, Medicine
Multi ple social issues Fairness, Choice, Privacy, Respect, Trust,
Identi ty, Community, Belonging, Shame, Laws, Opportunity, Support, Diagnosis, Perfecti on, Technologizati on, Diversity
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Value-Sensiti ve Design Methodology for including and incorporati ng human and societal values throughout the design process
Developed by Batya Friedman
Wide view of ( in)direct technology stakeholders
Multi discipl inary Triparti te Methodology
Conceptual: Philosophy / Law
Empirical: Social sciences
Technical: Engineering
Applicati ons in urban-planning,open-source, conservati on
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ConceptualInvestigation
Empirical Investigation
Technical Investigation
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Access Normalcy Respect Choice Identity EmpowermentAutonomy Trust Privacy CommunityFairness Literacy
Access to Life
Medical Model
Social Model
Self-Advocacy
Success in Life
Support
Faculty Support
Support Failure
Stigma
Embarrassment & RidiculeInvisibility & DisclosureDiffusion of Innovations
AT Adoption
Human Factors
Values
Them
es fr
om L
itera
ture
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Value: PrivacyDefi niti on:The right of a person to determine what informati on about him or herself is communicated to others
Literature: Cory. “Identi ty, Support And Disclosure: Issues Facing University Students With Invisible Disabil iti es.” 2005.
Edwards. “ The Scars of Dyslexia: Eight case studies in emoti onal reacti ons.” 1994.
McDermott . “ The Acquisiti on of a Child by a Learning Disabil ity.” 1993.
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Value: CommunityDefi niti on:
Sense of belonging to a group of people due to sharing a common set of att ributes (e.g. , local i ty, ethnic ity, abi l i ty, etc.) and the abi l i ty of the group to act as a s ingle enti ty for i ts own bett erment
Literature: Cory. “ Identi ty, Support And Disclosure: Issues Facing University Students With Invis ible Disabi l iti es.” 2005.
Gerber et al . “ Identi fying alterable patt erns in employment success for highly successful adults with learning disabi l iti es.” 1992.
Rogers. “Diff usion of Innovati ons.” 2003.
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Value: FairnessDefi niti on:
The bel ief that al l individuals should be treated favourably and that reasonable steps should be made to ensure that al l persons have an opportunity to succeed in l i fe
Literature: Charlton. “Nothing about us without us: Disabi l i ty oppression and empowerment.” 1998.
Will iams & Ceci . “Accommodati ng learning disabi l iti es can bestow unfair advantages.” 1999.
Zirkel . “Sorti ng out which students have learning disabi l iti es.” 2000.
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THREAD 4: NORMALCY
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Defi ning Normalcy
Previous concept of the unreachable ideal
Entered English language around 1860
Result of industrial, medicine, and science revoluti ons
Based on noti ons of stati sti cs
Associated concepts
Conformity Isolati on
Rejecti on Sameness
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The Good of Normalcy Stati sti cal averages and ranges guide
Medicine
Science
Engineering
Normal behavior is an aspect of civilizati on
Not normal to kill and/or eat one’s neighbors
Not normal to steal from others
Moti vati on to improve
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The Bad of Normalcy Lack of a shared, unchanging defi niti on
Like Justi ce Stewart ’s defi niti on of pornography “I know it when I see it”
Confl icti ng noti ons of worth
Normal people are not successes, beauti ful, intelligent, etc.
Normal people are healthy, smart, happy, etc.
Pithy, worthless statements of diversity
We’re all the same in that we are all diff erent.
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Normalcy
An individual’s concepti on of what the qualiti es and abiliti es (physical, mental, emoti onal, etc.) of other members of society are and how it compares to the individual’s own qualiti es and abiliti es.
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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 diff erently but that is not his fault
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NORMAL PEOPLE SUCK!
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Case Studies 11 interviews with adults with RDs / LDs 1 previous interview from earl ier 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
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“Kellie”
Successful web comic arti st
Has had to address her poor spelling:
So if anyone wants to tel l me that I can't spell and to enlighten me on the wonders of a new and fun inventi on called a dicti onary or spell check then I would be overjoyed to tel l them…
words of condolence, apology, r idicule or support are unwanted and unneeded
Advocates for and inspires others with dyslexia
Admits she only does so as she cannot hide
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“Nigel” Graphic design / 3D modeling
Raised in Britain
Views self as lucky
Parents could aff ord good schooling for him
Brother was unable to have same schooling
Less visibly aff ected than schoolmates
Avoids telling employers about his dyslexia
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WOVEN CLOTH: DYSLEXIA, TECHNOLOGY ADOPTION, AND WORKING WITH NORMALCY
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Sad Conclusion: Assisti ve technologies for adults with reading disabiliti es are unlikely to be adopted
Reasons:
Preference to hide
Normal not to struggle with reading
Associati on of ability with literacy skills
Negati ve past experiences
Want to overcome disability and past
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Diff usion of Innovati ons by Everett Rogers Model for adopti on of technologies / ideas in a community / society
Knowledge and adopti on of technologies are guided by communicati on networks and visibility of use
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Diff usion of Innovati ons by Everett Rogers Model for adopti on of technologies / ideas in a community / society
Knowledge and adopti on of technologies are guided by communicati on networks and visibility of use
Some people are more infl uenti al than others
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People with reading disabiliti es tend to tacti cally hide disability from others
Stealth AT usage slows diff usion
Social network of users is sparse
Disclosure of disability also uncertain Without visible users of ATs for reading, technology diff usion will be slow or fail
April 7, 2010
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Context
Technology
Person
Reading Disability
Task
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Context
Technology
Person
Reading Disability
Hiding Reading
ProblemsAnd
Help with Reading
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Context: Everyone uses the same technology
Technology
Person
Reading Disability
Help with Reading
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Calico: Reading Tool General purpose reading support soft ware
Contains add-on tools to support variety of reading tasks
One tool is secretly a meta-tool
Performs reading assessments
Recommends specifi c tools based on assessments
Users with RDs choose the level at which to hide
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This is inclusive education and universal design Helps behind the scenes Technology supports all readers
General populace drives diff usion
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LOOSE ENDS
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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 soluti ons?
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Open Questions
What is the role of normalcy in technology usage for other disability types?
Does normalcy aff ect technology usage among the general populati on?
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Concluding Thoughts
Everyday, I see other people. I compare myself to them. That is normal.
I fi nd 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 aft er all. Are you normal?
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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 informati on, please contact
Kate Deibel <[email protected]>
htt p://www.cs.washington.edu/homes/deibel
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