AHEAD Power Point Outline

(Session 1) REFRAMING DISABILITY FROM PATHOLOGY TO CAPABILITY 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 DISABLIITY 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 to DEVIANCE to DIFFERENCE to 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 DISABLITY “Medical Model” (Defect to Deviance to Difference (negative)) Person is problem Response is individual and personal Person is passive/needing help of others (dependent) Professionals authority/gatekeepers Examples of responses/behaviors? “Social Model” (Difference (positive) to Diversity Society creates the problem Response is systemic Focus on participation, responsibility Experts 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…

(Session 2) REFRAMING DISABILITY FROM PATHOLOGY TO CAPABILITY 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 granted Environment built for ‘average’ abilities Social structure of ‘helping’ “less fortunate” Sends messaged to everyone

CONVEYING OVERT MESSAGES Design Architecture, Products, Services, etc.

(Picture of blind person walking into the underside of a staircase) (Picture of a computer screen with webpage) (Picture of a 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 “Its 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 see 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.

OTHER MANIFESTATIONS Policy Qualifications Standardization Programmatic Separatism Lack of accessibility Employment Job descriptions Full-time for benefits What else?

VALUES UNDERLYING ABLEISM? Individualism Independence Self-sufficiency Athleticism Physical fitness Responsibility for one’s health Helping others “less fortunate” Good intentions ‘Fairness’ No ‘special’ treatment What else?

INVISIBLE KNOWLEDGE – CHANGE IN THE WIND What is the ratio of those who acquire 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? 40 – 53 million

Who were the first athletes to participate in organized sports for those with physical disabilities? Disabled veterans after WWII What four sports in the 2012 Olympics included an athlete with a physical disability? Track, Oscar Pistorius, South Africa, double amputee Archery, Im Dong Hyun, South Korea, visual impairment Table Tennis, Natalia Partyka, Poland, no right arm Diving, Chris Colwill, United States, hard of hearing

Sonia Sotomeyer, the newest Supreme Court judge, has what disability? Diabetes Tom Cruise and Whoopie Goldberg have what disability in common? A learning disability What Pixar animated film featured at least two characters with disabilities? Finding Nemo

“Abby and Brittany” is a cable show about who? Co-joined twins What 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 1988 Jerry’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 Transportation What set of access principles were created to be applied to the built environment? Universal Design What was the first law to focus on the civil rights of people with disabilities? Rehabilitation Act of 1973, Section 504 What concept emerged in the 1970s that promoted systemic change for people with disabilities Independent Living

Little known signs of change Universal Design UD for Learning/Teaching Independent Living Centers Different than other disability agencies Disability Rights Section 504 ADA and Amendments Disability Studies Disability Culture More to come….

(Session 3) REFRAMING DISABILITY FROM PATHOLOGY TO CAPABILITY 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 be 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 sexism Creation 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 architect Told he ‘could not make it through program’ by dean at North Carolina State Accommodated by family Began his career in early 1970s Center for Universal Design at North Carolina State University

Personal to Political Principles for accessible design Environments Communications Products Instruction Involved with first accessible design standards Began to change physical environment Puzzle piece: Did trainings with Disability Rights Education and Defense Fund (DREDF) for access required by Section 504 Universal design concept expanded beyond physical

DESIGNING FOR INCLUSION Equitable 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 action 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 15 (1953) After high school, went to community college Applied for financial support from VR Denied as “too disabled to work” Applied/admitted to UC-Berkeley in 1962 but denied Adapted residence in on-campus health facility First severely disabled student Needed assistance for daily living activities

Persona to Political Other students soon follow Physically 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 1975 Created more ILCs in state Berkeley-CIL major player in sit-in for Section 504

IL CENTERS Different than other service agencies Consumer controlled Community based At least four key services Peer counseling Independent living skills training Information and referral System and individual advocacy At least one in all states Imported idea to other countries

DISABILITY RIGHTS Judy Heumann (1949 - ) Polio at age of 18 months Not allowed to attend local school until 4th grad Parents had to advocate Graduated from Long Island University 1969 Inaccessible campus Had to rely on others for help Told her goal to be a teacher was impractical Successfully completed degree in teaching Personal to Political Denied teaching license Sued and won First WC user to teach in NY Started Disabled in Action Puzzle piece Co-Director of CIL in 1975 Led protests for Section 504 regulations Co-founded World Institute on Disability Multiple 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 mandate involvement of people with disabilities Americans with Disabilities Act (ADA) 1990 Lots 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 MA Discouraged from teaching and lack of financial help Adapted by using his mouth Eventually got Dictaphone and transcriptionist Dependent upon government support

Personal to Political Received PhD in 1984 Wrote book about George Washington Could not receive royalties (unearned income) Burned book in protest Social 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 in 1996 Promotes disabled people as a minority group AS AN ACADEMIC DISCIPLINE Field dedicated to examination of disability As social, cultural, and political phenomenon Challenges disability as an individual deficit or defect No one definition what it is Interdisciplinary/multidisciplinary Generally subscribes to “minority group model” Covers diverse group of people Not without critics Personal experience sometimes ignored May not engage with other forms of sociopolitical oppression

WHERE DO WE GO FROM HERE? “Great leaders do not create great movement. 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?

Thanks for taking this short course!

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Outline of articles and videos assigned to participants

First week, Thematic Thread – The Way We See Things Is Also the Way We Do Not See Things (medical vs social model):

Reading: Charlton, J. (1998). Nothing about us without us. Berkeley and Los Angeles: University of California Press. Chapter 4 – Culture(s) and Belief Systems

Reading: Baynton, D. C. (2001) “Disability and the justification of Inequality in American History”, in Longmore, P. and Umansky, L. (eds), The new disability history. New York and London: New York University Press.

Video: A Little History Worth Knowing (disability history) Second Week, Thematic Thread – From Defect and Deviance to Difference and Diversity (historical context):

Reading: Russell, M. (1998). Beyond ramps: disability at the end of the social contract. Monroe, Maine: Common Courage Press. Chapter 7 – From Tiny Tim to Jerry Lewis: Charity and Economic Rights on a Collision Course

Video: NBC Dateline: No Way In (featuring ADA)

Third week, Thematic thread – From Adaptation to Revolution (featuring Ron Mace, Ed Roberts, Judy Heumann, and Paul Longmore):

Reading: Johnson, M. (2003) Make Them Go Away: Clint Eastwood, Christopher Reeve & the Case Against Disability Rights. Louisville, KY: The Avocado Press. Chapter 13 – Discrimination and the formation of a minority; Chapter 14 – Disabled ‘R’ us

Reading: Longmore, P.L. (2003) Why I Burned My Book and Other Essays on Disability. Philadelphia: Temple University Press. Chapter 5 – The Disability Rights Moment; Chapter 10 – Medical Decision Making and People with Disabilities; Chapter 13 – Why I Burned My Book

Reading: Kilb, L.D., Esq. (2012) “Come On In, The Water’s Fine – But Only If You Can Get There”, on line resource from Disability Rights Education & Defense Fund (DREDF)

Video: Vital Signs: Crip Culture Talks Back (cultural discussion of disability).