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