Tuesday, March 1, 2011

Wolf Wolfensberger - 1934-2011 - Thank you


Sadly, Professor Emeritus Wolf Wolfensberger died on 27th February, 2011, following a long illness. His was a very productive life, well-spent.

Dr Wolfensberger had a strong commitment to people 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 honest critic.

He was also controversial and ignited many debates, involving strong differences of view. Such is a culture of engagement with complex questions. 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 organizations in the US proclaimed Dr Wolfensberger one of the 35 parties that 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 7 contributions to the lives of people with disabilities, along with Salk and the polio vaccine, braille, Americans with Disabilities Act and the wheelchair.

He was perhaps best known for developing social role valorization theory from his, and Nirje's, concepts of normalisation. Social role valorization has been taught to many using and running disability services, and 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 developed PASSING, a detailed methodology for assessing disability services with regard to how well they rate on meeting the needs of the people they serve. He wrote a highly practical protection schema for disabled people who are hospitalised - increasingly relevant in our efficiency- and highly short-term curative-based hospital care. Much more... he authored over 40 books and monographs, over 250 chapters in books and many journal articles.

One of his latest articles that I am aware of: How to comport ourselves in an era of shrinking resources covers as pertinent an issue as the many 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 coming, very difficult, circumstances.

Many people who have disabilities have benefited from his work in a change in 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 tinge). To some this might merely have been funny but he would show how such fads wasted resources, or worse, cause injury to the people they were ostensibly for.

His German background was obviously important in sensitizing him to 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 meaning 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 asked: "if there is such a thing as imprudent profligacy - a concept he raised - then what is prudent profligacy." In answer he pointed 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:

Wolfensberger, W. (2010).How to comport ourselves in an era of shrinking resources. Intellectual & developmental Disabilities,48,2)

Wolfensberger, W. (2005). The new genocide of handicapped & afflicted people (3rd (rev) ed.). Syracuse, NY: Syracuse University Training Institute for Human Service Planning, Leadership & Change Agentry.

Wolfensberger,W. (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. Training Institute for Service Planning, Leadership & Change Agentry. Syracuse University.

Wolfensberger,W. (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. edition Training Institute for Human Service Planning, Leadership and Change Agentry, Syracuse University (Syracuse, N.Y. 805 South Crouse Ave., Syracuse 13244-2280 USA)

Wolfensberger,W. (1992). A guideline on protecting the lives & health of patients in hospitals, esp0ecially if the patient is a member of a societally devalued class. Syracuse NY. Training Institute for Service Planning, Leadership & Change Agentry. Syracuse University.

Wolfensberger,W. (1977). PASSING. Program analysis of service systems implementation goals. National Institute on Mental retardation. Canada.

Wolfensberger,W. (1977). A Multi-component advocacy/protection schema. Law & mental retardation. A monograph series. Association resources Division. Canadian Association for the mentally retarded.

Wolfensberger,W. (1975).The Origin and Nature of Our Institutional Models. Human Policy.

9 comments:

  1. I agree that Wolfensberger has made a difference, but do not believe it has always been positive.

    The section below is an extract from my submission to the Productivity Commission (no 599 on its website) To place it in its context I suggest reading the full submission.

    John Homan
    Yeppoon

    Normalisation

    In the eighties the social model of disability became all the rage. It purported to address the social and emotional needs of people with disabilities as well as their physical ones: levels three and four in Maslow’s Hierarchy of Needs: ‘self actualisation’, empowerment.
    Normalization developed by Neils Bank-Mikkelsen (1980) of Denmark and Bengt Nirje of Sweden in 1969, was introduced in Australia in the eighties when de-institutionalisation was gaining momentum, and became the dominant philosophy.
    “Making available to all mentally retarded people [sic] patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life of society.” (Perrin and Nirje 1985:69)
    Wolf Wolfensburger developed his version of normalisation in 1972 and called it Social Role Valorisation (SRV)
    The highest goal of the normalization has recently been clarified to be the establishment, enhancement, or defence of the social role(s) of a person or group, via the enhancement of people's social images and personal competencies. It is proposed that normalization be henceforth called "social role valorisation."
    Normalisation or SRV aims to make people who are different appear ‘normal’, not different. It is envisaged that they will be better placed to be respected and accepted in society; however:
    “… the arbitrary disciplinary process of normalisation [“SRV”] has robbed us all of our difference, our society of its sensitivity to diversity and thus of true tolerance, and our culture of its potential richness, all to serve ultimately the interests of a privileged minority”. (Branson and Miller 1992)
    Normalisation’s culture and practices did not lead to empowerment. They further legitimised the status quo. SRV and Normalisation have proved to be as controlling as the medical model and so, what is referred to as the social model of disability, is in fact no more than a new version of the medical model.
    “One of the central contradictions of normalisation [“SRV”] is that while it purports to re-value people with disabilities, it is rooted in a hostility to and denial of “differentness””. (Szivos 1992:126)
    “SRV” is seen by many as ‘best practice’, and has significantly influenced the Disability Services Act 1986 (DSA). The legislation emphasised de-institutionalisation by enshrining “SRV” principles into its Objects (s.3) and the Act’s Principles & Objectives. [xx] (Campbell, F., 1998)

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  2. Erik thank you so much for your words about Dr. Wolfensberger. I think you have touched on some of his outstanding qualitites - a few in particular resonated immediately: devastating analyst, meticulous researcher and human service craze detector. His work opened my eyes to so many things that I can't imagine not having the gift of his intellect and his compassion. His huge contribution to our collective understanding of the common life experiences of marginalised people will, I believe, stand the test of time. His significant body of work will undoutedly live on and it is now left to others to ensure that the fruits of his massive intellect are neither neglected or corrupted. I too will remember him with fondness and great respect. As well as being an enormous influence on my professional practice Dr Wolfesnsberger's work on SRV has equipped me to help safeguard the well being of people personally close to me and in recent times to advocate for my father who now lives with dementia. Thank you Wolf and thanks to you Erik for your respectiful and honest acknowledgemnt of his work.

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  3. Wolfensberger's work should be remembered as a huge contribution to wellbeing and safety of people with disabilities. Of course there have been different views about his work, how to implement its concepts and on their impact - some based on a less than full understanding of his work.

    I think that we should pause and reflect on his contribution right now. There may be another time and place for rehashing stale critiques.

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  4. I am in agreement with you wholeheartedly Erik about there being another time and place for rehashing stale critiques. Our small and vibrant SRV Group will be meeting this afternoon and we will take the opportunity to pause and reflect on the contribution that this man has made and what it has meant to each of us individually, and professionally. Like Bev (Hello Bev) I have just recently spent 6 months protecting my wonderful Dad from the intrusions of the health care sector and the 'careless' systems. I sincerely appreciate all of what Wolf has taught and so generously shared.

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  5. Vale, Wolf and thankyou. You gave me the tools and the courage to remove my daughter from 18 years of institutional living, to back home in the love and care of her family.

    Your philosophies and teachings have continued to guide me in my fight for the rights of people with intellectual disability and their families so that they may have "good lives" similar to most other Australians.

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  6. I find thiss very sad. I was a keen follower of Wolf. A gentle man with true conviction. I attended many of his workshops through which my world view and life changed.
    For the last 20 years I've lived my life via his SRV principles and thank him for this challenge.

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  7. Erik- Thank you for this wonderful tribute. You have done an amazing job explaining his work in a way anyone can appreciate (without delving into the depths of academic language often used in SRV circles. I am from the Maine and would love to reprint this blog post for disability-related newsletter. Ok to do this with a link to your blog? If so, would you like us to include your last name? (I don't see it anywhere)
    Thanks again.

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  8. Thank you. Yes of course you may reprint with a link to the blog, as follows: http://ndisonline.blogspot.com/2011/03/wolf-wolfensberger-1934-2011-thank-you.html My full name is Erik Leipoldt.

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  9. When I started working in Human Services 30 years ago SRV theory provided the vision and direction needed to change service delivery. I saw how Institutional Services increased the disabling effects of any disability by isolating and robbing individuals of the “patterns of life and conditions of everyday living which are required for personal development”. Despite the well meaning and hard work of staff, Institutions with its culture, practices and values could not and often still does not deliver on the promise of “a good life”.
    I count myself as very privileged to have assisted many people move from Institutions into community living and reconnect people with family and advocacy supports which made a real difference. I was rewarded by seeing individual personalities emerge and grow, I saw people gain skills support workers never thought possible. And me well I found my purpose and direction in life – Thankyou Dr Wolfensberger

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