sw 644: issues in developmental disabilities normalization roundtable discussion lecture presenters:...
TRANSCRIPT
SW 644: Issues in Developmental DisabilitiesNormalization Roundtable
Discussion
Lecture Presenters:John O’Brien, Ph.D.
Lynn Breedlove, Executive Director, Wisconsin Coalition for AgingCharles Degeneffe, MSSW
Aaron Bishop, MSSW
Video
Normalization – Concept and Origins
Post-WWII context: United Nations declaration of human rights
Late ’50s - early ’60s: took form in Scandinavia, Denmark, and Sweden
Focus on quality of life and material standards – disability no longer basis of exclusion or control
Video
Effect on Availability of Services Today
New consciousness re institutions Movement away from institutions to
smaller, more disperse settings
Popularity and Growth of Normalization Principle
Wolfensburger – systematic formulation of different ideas
Christmas in Purgatory by Burton Blatt – condemnation of institutional model
Ben Neria – visit to U.S. and scathing remarks re human rights violations
Law and Public Policy’s Role
Blacks in the U.S. - separate but not equal (Brown v. Board of Education)
Cultural bias in testing Disabled veterans movement and
lobby
The Normalization Principle
Social stigma constraint - President’s Committee, Kennedy family involvement, and parent movements
Technical support A vehicle for change
The Normalization Principle (cont.)
The parent movement – early endorsement
Key people – Neria, Wolfensburger, and O’Brien
Three roles of people with developmental disabilities – 1) human being, 2) citizen, and 3) developing person
Adherence to Normalization Precepts
Normalization defined: using culturally valued means to establish conditions that are as culturally valued as possible
By 1972, operational definition of normalization – assessment tool for service programs
Normalization principle as ambiguous and contested
Adherence to Normalization Precepts (cont.)
Issues of choice and autonomy Deconstruction of the normalization
principle – Mark Gold and Lou Brown “Open” organizations to challenge the
existing structure
An Agent for Change
Individual level and program level changes
“Ladder” metaphor
Searching for Solutions People’s position(s) in a system not
relevant More and more people in federal and state
government asking the question, “Can we get out of people’s way?”
Rising awareness of disability as public issue
Maintaining the structure of exclusion “Ladder” metaphor
Searching for Solutions (cont.)
Example(s) of how the system gets in the way of people…living the life they want or programs trying to be innovative
WI Medicaid Waiver programs – outright prohibition for spending money on community-based employment
Criticisms Integration – still not experiencing
community participation and relationships
A lot of people in congregate settings Segregated schools in Wisconsin Antiquated traditional group homes
and sheltered workshops Control still in hands of professionals Self-determination – lack of progress
Criticisms (cont.) Normalization misinterpreted as
forcing people to conform A colonial concept – articulating
people’s experiences and cooking up prescriptions
“Scientific” community – call for empirical evidence
Recognition that normalization principle is political
A “Tragic Theory”
A theory that says, “What we’re going to discover is imperfection”
Helping people make their next step will also create difficulties
Example: people with disabilities having more choice
Potential for Frustration
The way out of the situation is to get into it deeper
Involves strength and courage and learning through joint experience
Most people spend most of their time just surviving every day
A heightened appreciation of contradictions
Potential for Frustration (cont.) The notion that there are common
experiences in lives of people with disabilities - a social (systematic) pattern
Recognizing that we play a role personally and systemically in magnifying people’s vulnerability
Our model of dealing with people’s need for a decent place to live and some assistance is to weld them together
Understanding People with Disabilities
Need to appreciate people’s resistance and resilience, gifts and contributions
Opening the economy to people with substantial disabilities
Need to understand how people are vulnerable and how people can contribute
Current Understanding of Normalization
A vision of our communities Relationships of people with
disabilities Roles of people with disabilities in
their communities
Guiding and Shaping of Services Implementation of principles not yet
complete Wolfensberger – need for greater precision
in concept of identity Ideas of integration, choice, and support Basic notions still intact, though
terminology may be changing New viewpoints and resources provide
opportunities for theoretical and practical synthesizing
Consensus Re: Normalization Among Service Providers
Wisconsin – strong adherence in principle but perhaps not in practice
Reference to a historical period New era of self-determination Congregate institutions and the
banner of normalization Need to ask, “Is that really as much
as we possibly can do?”
Locus of Change
Personal - necessary that change happen in relationship between person with disability, people assisting, and people in community
Policy – opens up a new path for lots more people
Need to make more individual paths possible