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REFRAMING D
ISABILIT
Y
FROM PATHOLOGY T
O CAPABILIT
Y
The way we see things is also the way we do not see things
PAST TO THE PRESENT
History
Different ideas (perspectives)
Different behavior (responses)
Contextual (societal) factors
Changing dominant interests/influences
Reflects ideas/behavior
New knowledge produces new perspectives
Creates new responses/behavior
PERSPECTIVES OF DISABILITY
Four perspectives developed over time
All four seem to exist in the present
Reflected in societal responses
Perspectives reflect ideology/knowledge
How ‘disability’ is defined
Identification of ‘problem’
Solution to problem
Shaped by what we believe to be true
DEFECT -> DEVIANCE -> DIFFERENCE -> DIVERSITY
Two perspectives have long history
Dominant interests/influences
Religion - Supernatural/Moralistic
Science - Medical
Two perspectives are relatively new
Dominant interests
Capitalism - Economic/Environmental
Group Identity - Civil Rights/Independent Living
All reflected in basically two Models of Disability
MODELS OF DISABILITY
“Medical Model” (Defect -> Deviance -> Difference (-))Person is problemResponse is individual and personalPerson is passive/needing help of others (dependent)Professionals authority/gatekeepers
Examples of responses/behaviors?
“Social Model” (Difference (+) -> Diversity)Society creates the problemResponse is systemicFocus on participation, responsibilityExperts are people with disabilities, has control of life
Examples of responses/behaviors?
The following gives a comparison of specific aspects related to the two models
Medical (Individual) Model Social (Rights) Model
Personal Tragedy Theory Social Oppression Theory
Personal Problem Social Problem
Individual Treatment Social Action
Medicalization Self-Help
Professional Dominance Individual/Collective Responsibility
Expertise Experience
Individual Identity Collective Identity
Care Rights
Control Choice
Policy Politics
Individual Adjustment Social Change
Majority of world stigmatizes Disability
No one wants to be considered disabled
Ableism pervasive
Unrecognized
Disability becomes ‘invisible’
Barriers and bridges to change
What hinders, what helps?
More to come….
REFRAMING D
ISABILI
TY
FROM PATHOLOGY T
O CAPABILIT
Y
From Defect and Deviance to Difference and Diversity
BARRIERS TO REFRAMING
Ableism‘Construction of beliefs, processes and practices based on the perfect, species-typical self/body considered to be essentially and fully human.’ (Campbell, 2001:44)
Creates patterns of discrimination, prejudice and stereotyping Not as well understood Unknown, unrecognized and underestimated
Inherent in what we take for grantedEnvironment built for ‘average’ abilitiesSocial structure of ‘helping’ “less fortunate”Sends messages to everyone
CONVEYING OVERT MESSAGES
DesignArchitecture, Products, Services, etc.
Blind person walking into staircase
Computer screen with webpage
SUV type taxi cab
CONVEYING COVERT MESSAGES
Micro-aggressions
Example of a poster of a failed attempt of awareness program. It says to take a picture of someone in a wheelchair for a prize.
Denial of Identity“It is so great to see you out”No part of life is normal or like mine. Only thing I see is your disability.Infantilization“Let me do that for you”You are not really capable. I know how to do this better than you.Patronization“You are so inspiring”
Participating in regular activities seen as “feat”
Second Class Citizen“We don’t have many people with disabilities come here but when more do, we will make our place more accessible”Rights to equality denied because one is considered to be bothersome, expensive and a waste of time, effort and resources
Cartoon of very steep ramp. Man says “I’ve had a ramp installed” with sneer on face.
Cartoon of 4 men, one in wheelchair. One man says “Sorry Joe, We can’t get you a cab.” leaving the man in the wheelchair left behind.
OTHER MANIFESTATIONS
PolicyQualificationsStandardizationProgrammaticSeparatismLack of accessibilityEmploymentJob descriptionsFull-time for benefitsWhat else?
VALUES UNDERLYING ABLEISM?
IndividualismIndependenceSelf-sufficiencyAthleticismPhysical fitnessResponsibility for one’s healthHelping others“less fortunate”Good intentions‘Fairness”No ‘special’ treatmentWhat else?
INVISIBLE KNOWLEDGE – CHANGE IN THE WIND
What is the ratio of those who acquired a disability and those who are born with one?5 out of 6 (83%)Out of 69.6 million families in the US, how many have at least one family member with a disability?20 million (28.7%)Approximately how many people in the US have a disability?49 – 53 million
Who were the first athletes to participate in organized sports for those with physical disabilities?Disabled veterans after WWIIWhat four sports in the 2012 Olympics included an athlete with a physical disability? Track, Oscar Pistorius, South Africa, double amputeeArchery, Im Dong Hyun, South Korea, visual impairmentTable Tennis, Natalia Partyka, Poland, no right armDiving, Chris Colwill, United States, hard of hearing
Sonia Sotomeyer, the newest Supreme Court judge, has what disability?DiabetesTom Cruise and Whoopie Goldberg have what disability in common?A learning disabilityWhat Pixar animated film featured at least two characters with disabilities?Finding Nemo
“Abby and Brittany,” is a cable show about who?Co-joined twinsWhat invention led to our current ability to communicate through texting on cell phones?The Telecommunication Device for the Deaf (TDD) I. King Jordan became the first Deaf president of Gallaudet University after what event?Deaf students staged a strike and closed the university down in 1988Jerry’s Orphans are known to opposed what annual event?Jerry Lewis MDA Labor Day Telethon
ADAPT is an organization originating in Denver. What did ADAPT stand for when first started?Americans with Disabilities for Accessible Public TransportationWhat set of access principles were created to be applied to the built environment?Universal DesignWhat was the first law to focus on the civil rights of people with disabilities?Rehabilitation Act of 1973, Section 504What concept emerged in the 1970s that promoted systemic change for people with disabilities?Independent Living
Little known signs of changeUniversal Design
UD for Learning/TeachingIndependent Living CentersDifferent than other disability agencies
Disability RightsSection 504ADA and AmendmentsDisability StudiesDisability Culture
More to come…
REFRAMING D
ISABILIT
Y
FROM PATHOLOGY T
O CAPABILIT
Y
From Adaptation to Revolution
AND SO IT BEGINS
“It is an historical fact that the privileged groups seldom give up their privileges voluntarily…. We know, through painful experience that freedom is never voluntarily given by the oppressor, it must be demanded by the oppressed.” - Martin Luther King, Jr.
“Our [disability rights] movement won my right to live independently, to work productively, to gain access to public places, to receive reasonable accommodations, and to obtain protection from discrimination…It offered me a positive, disability-affirming identity. It taught me pride.” – Paul Longmore
TRANSFORMATION
Context of late 20th Century
Wars and Polio epidemic Created large population of people with disabilities
Expanded access to higher education
Civil Rights/Feminist movement Recognized discrimination based on human characteristic
Academic critique of racism and sexismCreation of ethnic studies and women studies
SYNERGY
People with disabilities influenced by higher education
Had to adapt for success
Puzzle pieces start to come together
Major forces for reframing disability emerge
Universal (Inclusive) Design
Independent Living Centers
Disability Rights
Disability Studies
UNIVERSAL (INCLUSIVE) DESIGN
Ron Mace (1941-1998)Polio at age 9 (1950)
Wanted to be an architectTold he ‘could not make it through program’ by dean at North Carolina State
Accommodated by family
Began his career in early 1970’s Center for Universal Design at North Carolina State University
Picture of Ron Mace
Personal to PoliticalPrinciples for accessible design
EnvironmentsCommunicationsProductsInstruction
Involved with first accessible design standardsBegan to change physical environment
Puzzle piece: Did trainings with Disability Rights Education and Defense Fund (DREDF) for access required by Section 504Universal design concept expanded beyond physical
DESIGNING FOR INCLUSIONEquitable Use - useful and marketable to people with diverse abilities
Flexibility in Use - accommodates wide range of individual preferences and abilities
Simple and Intuitive Use - easy to understand, regardless of the user's experience, knowledge, language skills, or current concentration level
Perceptible Information - communicates information effectively regardless of ambient conditions or the user's sensory abilities
Tolerance for Error - minimizes hazards and adverse consequences of accidental or unintended actions
Low Physical Effort - can be used efficiently, comfortably, with minimum of fatigue
Size and Space for Approach and Use - appropriate size and space for approach, reach, manipulation, and use
INDEPENDENT LIVING
Ed Roberts (1936-1995)Polio age 14 (1953)
After high school, went to community collegeApplied for financial support from VR
Denied as “too disabled to work”
Applied/admitted to UC-Berkeley in 1962 but deniedAdapted residence in on-campus health facility
First severely disabled studentNeeded assistance for daily living activities
Picture of Ed Roberts
Personal to political
Other students soon followPhysically Disabled Students’ Program at UC Berkeley
Expanded into Center for Independent Living 1971
Berkeley one of most accessible cities
Puzzle piece
Later became the VR director in CA 1975Created more ILCs in state
Berkeley-CIL major player in sit-in for Section 504
IL CENTERS
Different than other service agenciesConsumer controlledCommunity based
At least four key servicesPeer counseling
Independent living skills trainingInformation and referralSystem and individual advocacy
At least one in all statesImported idea to other countries
DISABILITY RIGHTS
Judy Heumann (1949 - )Polio at age of 18 months
Not allowed to attend local school until 4th grade
Parents had to advocate
Graduated from Long Island University 1969Inaccessible campus
Had to rely on others for help
Told her goal to be a teacher was impractical
Successfully completed degree in teaching
Picture of Judy Heumann
Personal to Political
Denied teaching licenseSued and won
First WC user to teach in NY
Started Disabled in Action
Puzzle piece
Co-Director of CIL in 1975Led protests for Section 504 regulations
Co-founded World Institute on DisabilityMultiple roles in disability at federal level
CIVIL RIGHTS WITH A TWIST
Rehabilitation Act 1973 – Section 504 (public sector)Little attention by Congress
Focus on program accessibility; physical access as needed
First law to mandated involvement of people with disabilities
Americans with Disabilities Act (ADA) 1990Lots of attention
Stresses employment (Title I)
Physical access guidelines, accommodations
Patterned after Section 504
Twist: disability not neutral; needs to be recognized
DISABILITY STUDIES
Paul Longmore (1946 – 2010)Polio at age 7
Special education classes Encouraged by parents/teachers to attend Junior High
Graduated from Occidental College with BA and MADiscouraged from teaching and lack of financial help
Adapted by using his mouthEventually got dictaphone and transcriptionist
Dependent upon government support
Picture of Paul Longmore
Personal to PoliticalReceived PhD in 1984
Wrote book about George Washington
Could not receive royalties (unearned income)
Burned book in protestSocial Security later changed rules (Longmore Amendment)
Puzzle Piece
Began teaching at San Francisco State (age 46)Co-founded San Francisco State’s Institute for Disability Studies 1996
Promotes disabled people as a minority group
AS AN ACADEMIC DISCIPLINEField dedicated to examination of disabilityAs social, cultural, and political phenomenon
Challenges disability as an individual deficit or defect
No one definition of what it isInterdisciplinary/multidisciplinary
Generally subscribe to “minority group model”Covers diverse group of people
Not without criticsPersonal experience sometimes ignored
May not engage with other forms of sociopolitical oppression
WHERE DO WE GO FROM HERE?
“Great leaders do not create great movements. Great movements give rise to great leaders. . . No movement can exist without in this case millions of ordinary men and women asserting themselves to demand dignity and their rights. So that’s what our movement is all about. That’s our past. That’s our present. That’s our future.”
— Paul Longmore, July 2010
Is the movement over?
What will keep the movement going? Should we?Is identity important? Personal vs Group?
How can higher education still be influential?
What can you do to support the transformation?
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