Sadly, Professor Emeritus Wolf Wolfensberger died yesterday, 28 February 2011, following a long illness. His was a very productive life, well spent.
Dr Wolfensberger had a strong commitment to people who were made vulnerable in a society where individualism, utilitarianism and hedonism reign. He made a huge contribution to people with disabilities. He was a visionary, a devastating analyst and an honest critic. He was also controversial and ignited many debates, involving strong differences of view. Such is a culture of engagement. You never had to guess at the meaning of his words. He was strongly averse to political correctness, a characteristic which earned him some critics. He was courageous in advancing and, defending his meticulously researched theories and concepts.
In 1999, seven major developmental disability organisations in the US proclaimed Dr Wolfensberger one of the 35 parties who had been the most impactful on ‘mental retardation’ worldwide in the 20th century. Dr Wolfensberger’s work was also recognised by the US magazine Exceptional Parent’ as one of the great seven contributors to the lives of people with disabilities (along with Salk and the polio vaccine, braille, the Americans with Disabilities Act and the wheelchair).
Dr Wolfensberger was perhaps best known for developing the social role valorization theory from his (and Nirje’s) concepts of normalisation. Social role valorization has been taught to many who use or run disability services, and it is applied, to various degrees, in government policies and service practice.
Dr Wolfensberger also developed the concept of citizen advocacy, facilitating long-term relationships between a person with disability (or other vulnerable people) and a volunteer citizen. He wrote a monograph on advocacy. He also developed PASSING, a detailed methodology for assessing disability services with regard to how well they meet the needs of the people they serve. He wrote a highly practical protection schema for disabled people who are hospitalized—increasingly relevant in our efficiency.and highly short-term curative-based hospital care. In total, he authored over 40 books and monographs, over 250 chapters in books and many journal articles.
One of Dr Wolfensberger’s last articles (that I am aware of)—‘How to comport ourselves in an era of shrinking resources’, covers as pertinent an issue as the many others that he raised over his career. Controversial as always, in that article he takes a social triage approach to what might need to be done under very difficult circumstances at the present time.
Many people who have disabilities have benefited from his work in changing the focus from disability as a medical issue, or captives of care, to one where a good life means living with others and in settings that are normally valued in our society. His work was instrumental in the deinstitutionalisation of thousands of people with disabilities. It has informed disability advocacy. I am aware that in his own life he personally modeled compassionate service to ‘needy people’, a much used Wolfensberger phrase. He had a keen eye for the human tendency to take a concept or word and turn it into ‘fads’, perversions and ‘crrrazes’ (Dr Wolfensberger never lost some of his German.tinged accent). To some this might merely have been funny, but he would show how such fads wasted resources, or worse, causes injury to the people for whom they were ostensibly intended.
His German background was obviously important in sensitising him to the systematic patterns of devaluation of certain stigmatised categories of people, leading to their abuse and even extermination. His work and warnings on modern forms of ‘death making’ of people with disabilities, in genocidal proportions, sits awkwardly besides modern ideas of progress.
Having attended two of his backbreaking workshops in the nineties, I can still picture him behind the lectern, passionately going through overhead after overhead, filled with schema fitting within schema—from the big picture to the significance in individual lives. Simultaneously making various corrections to his material—his critiques extended to his own work.
Love him or not, Dr Wolfensberger’s work is lasting and cannot be ignored. He inspired many people, practices and policies, whether some are aware of that influence today or not. I will remember him fondly and with great respect, as I believe many will. I have learned much from his work and I thank him for his many contributions. By all accounts, his was a life well lived, in the service of others.
At one of his workshops, I think in answer to a question about critiques and praise of his work, he laughed that off by pointing to storing one’s riches in heaven, not here. I have no insider information but I suspect that he has now found much treasure there.
Some of Dr Wolfensberger’s publications:
(2010) How to comport ourselves in an era of shrinking resources, Intellectual and Developmental Disabilities 48, 2.
(2005) The new genocide of handicapped and afflicted people (3rd (rev) ed.). Syracuse NY, Syracuse University Training Institute for Human Service Planning, Leadership & Change Agentry.
(2003) The future of children with significant impairments: What parents fear and want, and what they and others may be able to do about it. Syracuse NY, Syracuse University Training Institute for Service Planning, Leadership & Change Agentry.
(1998) A brief introduction to social role valorization: A high.order concept for addressing the plight of societally devalued people, and for structuring human services (3rd rev. ed.). Syracuse NY, Syracuse University Training Institute for Human Service Planning, Leadership and Change Agentry.
(1992) A guideline on protecting the lives and health of patients in hospitals, especially if the patient is a member of a societally devalued class. Syracuse NY, Syracuse University Training Institute for Service Planning, Leadership & Change Agentry.
(1977) PASSING: Program analysis of service systems implementation goals. National Institute on Mental Retardation. Canada.
(1977) A multi.component advocacy/protection schema: Law & mental retardation. (A monograph series) Canadian Association for the Mentally Retarded, Association resources Division.
(1975) The origin and nature of our institutional models. Human Policy.