NY Times article: Our irrational fear of forgetting
A 22 May 2011 NY Times op-ed piece entitled “Our irrational fear of forgetting” raised questions around societal attitudes toward Alzheimer’s or more specifically, people who appear to have Alzheimer’s.
A few highlights I picked out:
• The writer warns of doctors who use the label of Alzheimer’s as a rationale for stopping life-sustaining treatments, such as dialysis.
• The writer warns of negative social and societal attitudes toward forgetfulness and senility, portrayed as well as reinforced by public media, such as apparently a current off Broadway play by Tony Kushner in which a retiree who ‘guesses’ that he has Alzheimer’s wants to sell his house and then kill himself; or the movie Poetry in which a woman who is told she has Alzheimer’s-though she is only shown in the film forgetting one word-jumps off of a bridge.
• The writer points out the high risk of being placed in the child role (baby talk, being patronized, treated like children), and even the non-person role (i.e., being seen as losing one’s personhood when one is perceived to have or actually does have significant memory trouble). In this vein, the writer emphasizes that human beings are more than just their ability to remember, and that people who have significant cognitive impairment and/or memory loss are still persons, can still enjoy family life and contribute to others.
• In a few anecdotes about her own mother, the writer it seems to me invites readers to step into her mother’s shoes (interpersonal identification).
• The writer calls for positive change in our societal values and attitudes toward elders as well as people with significant cognitive impairment (NB: relevant to SRV’s call for change on all levels, from the personal to the societal).
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Agency Factors and Structures …
A project with an interesting title:
Agency Factors and Structures which Increase Successful Outcomes in Community Participation and Socially Valued Roles
http://www.ici.umn.edu/index.php?projects/view/104
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Image juxtaposition: “Stage management 2.0”
A 29 May 2011 NY Times article about US President Obama’s visit to the UK mentions an event relevant to image juxtaposition and crafting positive images:
“Before Mr. Obama took his seat, an aide asked that two fax machines behind him be removed. The machines, which would have appeared in photographs just above his head, “had the quaint feel of museum pieces,” according to a pool report filed by a Washington Post reporter in the room — not the sort of image one would want in a meeting about the digital age. The offending machines were stashed on the floor, out of sight.”
Those concerned about the President’s image paid attention to the objects (possessions) near the person (of the President) and what message this juxtaposition would send.
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book: ‘Acts of Conscience’ by Steven Taylor
If you have not yet had a chance to read the following book, I recommend picking it up: Acts of Conscience: World War II, Mental Institutions, and Religious Objectors written by Steven Taylor, Director of the Center on Human Policy and Coordinator of Disability Studies, School of Education, at Syracuse University.
From book description: “In the mid- to late 1940s, a group of young men rattled the psychiatric establishment by beaming a public spotlight on the squalid conditions and brutality in our nation’s mental hospitals and training schools for people with psychiatric and intellectual disabilities.” An important and inspiring vision and ongoing challenge for service workers and concerned citizens today.
Read a review by David Race in the June 2010 issue of The SRV Journal.
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What are you reading? #4
The Southern Ontario Training Group sponsors Social Role Valorization and PASSING workshops in Ontario, Canada. Below is an SRV reading list they put on their website:
Suggested Reading
Listed below are books and articles written on or related to the topic of Social Role Valorization (SRV). The Southern Ontario Training Group recommends these readings to anyone wanting to learn more about SRV
Wolfensberger, W. (1998). A brief introduction to Social Role Valorization: A higher-order concept for addressing the plight of societally devalued people, and for structuring human services. (3rd ed.). Syracuse, NY: Training Institute for Human Service Planning, Leadership and Change Agentry (Syracuse University). Osburn, J. (2006). An overview of Social Role Valorization theory. The SRV Journal, 1(1), 4-13.
Osburn, J. (2006). An overview of Social Role Valorization theory. The SRV Journal, 1(1), 4-13
Wolfensberger, W. (2000). A brief overview of Social Role Valorization. Mental Retardation, 38(2), 105-123.
Race, D.G. (1999). Social Role Valorization and the English experience. London: Whiting and Birch.
Flynn, R., Lemay, R. (Eds). (1999). A quarter-century of Normalization and Social Role Valorization: Evolution and impact. Ontario, Canada: University of Ottawa Press.
Wolfensberger, W. & Thomas, S. (2007). PASSING: A tool for analyzing service quality according to Social Role Valorization criteria. Ratings manual, 3rd(rev.) ed. Syracuse, New York: Training Institute for Human Service Planning, Leadership and Change Agentry.
Related Reading
Berkson, Gershon (1988). All people have personal assets, Mental Retardation, 26(2), 71-73. Race, D. G. (Ed.). (2003). Leadership and change in human services. Selected Readings
from Wolf Wolfensberger. London: Routledge. Wolfensberger, W. (1988a). Common assets of mentally retarded people that are commonly
not acknowledged. Mental Retardation, 26(2), 63-70.
Wolfensberger, W. (1988b). Reply to “All people have personal assets.” Mental Retardation, 26(2), 75-56.Wolfensberger, Wolf (1989). Bill F.: Signs of the times read from the life of one mentally retarded man. Mental Retardation, 27(6), 369-373.
Wolfensberger, W., Thomas, S., and Caruso, G. (1997). Some of the universal “good things of life” which the implementation of Social Role Valorization can be expected to make more accessible to devalued people. SRV/VRS: The International Social Role Valorization Journal/La revue internationale de la Valorisation des roles sociaux, 1(1), 3-8.
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Book notice #4
We recently had the wonderful opportunity to spend some time with Jeff McNair, a professor at California Baptist University. He was in Massachusetts to give a talk about integration and faith communities. (Tom Doody, a long-term Citizen Advocacy coordinator and SRV teacher, spoke at the same day long conference.) In 2008, Jeff arranged for a 4 day SRV workshop to be taught at CalBaptist. He blogs regularly at jeffmcnair.com.
I noticed that this important topic of integration and faith communities will be the subject of several presentations, including one by Tom Doody, at the upcoming Social Role Valorization conference in September 2011 in Australia.
Conversations with Jeff and thinking about the SRV conference presentations prompted me to start re-reading a book entitled A Humanizing Ministry written by D. Timothy Estes, published by Herald Press in 1984. From the author bio, I learned that Estes was a Citizen Advocacy coordinator in Georgia and attended several workshops taught by Dr. Wolfensberger. His book heavily references Wolfensberger’s writings.
Below is the chapter outline of the book:
Chapter 1. Toward a humanizing theology
Chapter 2. The character of the church
Chapter 3. The task of the church (NB: this chapter includes a lengthy section on Citizen Advocacy and Normalization)
Chapter 4. The caring community
Chapter 5. Principles for a humanizing ministry
Appendix A: Addresses for resource material
Appendix B: Humanizing ministry retreat
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valued social roles referenced in an AmeriServe International newsletter
I don’t know anything about this agency but we ran across a newsletter for an organization called AmeriServe International, located in Iowa (US). The article on the front page discusses valued social roles, the ‘good things of life’ and competency enhancement. If anyone knows anything about the agency, we’d be happy to hear about it.
http://www.ameriserveintl.com/flyers/November_10_ASINews_IA.pdf
Also check out the article on page 3 entitled ‘Actions speak louder than words.’
And (as we’ve mentioned before in this blog) such human service newsletters can always be used as a teaching tool, e.g, to identify images (language, pictures, acronyms, logos, etc.) and the messages they communicate about societally devalued people.
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‘Work and Social Role Valorization’
I recently ran across this 2 page information sheet, from an agency in Australia, which describes an employment service from a specifically Social Role Valorization perspective. The info. sheet makes reference to the 2006 article published by Joe Osburn, An Overview of Social Role Valorization Theory [published in the 1(1) edition of The SRV Journal]. This information sheet could be used as an exercise in an SRV workshop, college class or staff meeting, to help people think about imagery issues from an SRV perspective.
The info. sheet is here:
Language and miscellaneous imagery (including logos) are two of the ‘channels’ through which images about people (p. 66, SRV monograph by W. Wolfensberger, 1998 3rd rev. ed.) and their social roles (p. 107, SRV monograph by W. Wolfensberger, 1998 3rd rev. ed.) can be communicated. In the PASSING manual (2007 3rd rev. ed.), these issues are discussed under R1432 Serving entity, program, setting, and location names (p. 259) and R145 Image projection of miscellaneous aspects of a service (p. 277).
Take a look at the information sheet from these SRV angles:
• find as many examples of language use and miscellaneous images (logos, symbols) in the information sheets as possible
• what do the language examples communicate about societally devalued people (e.g., their age, social status, roles, etc.)?
• what do the image examples communicate about societally devalued people (e.g., their age, social status, roles, etc.)?
• is the language consistent with the culturally valued analog?
• what image messages about societally devalued people would likely be communicated by these language and image examples?
• overall, considering all of the image messages, what general impression(s) is created about the societally devalued people referred to in the info. sheet?
• how would such image messages likely shape the perception of devalued people in the minds of others?
• how might these perceptions affect the way devalued people are treated by others?
• and so on
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‘Smart home’
Take a look at the following video from a Social Role Valorization perspective:
http://www.youtube.com/watch?v=ZQt_Rq1mStE
What lessons can we learn from this brief video? And what implications might these lessons have in terms of how we support vulnerable societally devalued people to acquire and maintain valued social roles, with an eye toward greater access to the ‘good things of life’?
* The gentleman who is interviewed, Mr. Sergio Ivanier, says that the ‘smart home’ technology also benefits the people he lives with. Consider this idea in light of the SRV concept of interpersonal identification, helping us to see others as like ourselves and thus wanting (and being willing to provide) the ‘good things of life’ for other people. Think about both the possible advantages as well as disadvantages to this technology and the attitudes or values behind it. (This is one of the strengths of SRV and PASSING, in that they can help us to look at both concrete details as well as the big picture, and to analyze advantages and disadvantages.)
* Consider the points which Mr. Ivanier makes about isolation, dependence and asking others for help; particularly in light of heightened vulnerability. What can his concerns teach us about the primary values of our society? How might these values create greater vulnerability for impaired people? Though apparently more independent in certain ways at home, in what ways is Mr. Ivanier still vulnerable, perhaps even more so? Do not just think about physical vulnerability but also emotional, relational and social degrees of vulnerability. Again, consider the details as well as the big picture, and potential advantages as well as disadvantages.
* What valued roles is Mr. Ivanier described as having? Might the ‘smart home’ technology play any direct or indirect part in supporting those valued roles?
* It is hard to tell just from a brief video, but several PASSING competency ratings may have a bearing on the technology described and demonstrated in the above video:
• R232 Intensity of Activities and Efficiency of Time Use (p. 403 in the PASSING manual), specifically around any competency-enhancing equipment that is owned by a human service (I am not sure from the video who owns the equipment)
• R213 Physical Comfort of Setting (p. 311 in the PASSING manual)
• R233 Competency-Related Personal Possessions (though again, it is hard to tell who owns the equipment)
Specifically in terms of the technology, we can also consider any possible imagery impacts, such as in R1153 Image Projection of Setting-Other Internal Physical Features (p. 127) and/or R1132 Internal Setting Appearance Congruity with Culturally Valued Analogue (p. 93).
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Dr. Wolf Wolfensberger: requiescat in pace
Requiescat in pace. 1934-2011
Wolf Wolfensberger, Ph.D., 76, of Syracuse, New York, died on February 27, 2011, at St. Joseph’s Hospital. Since 1973, Dr. Wolfensberger was a professor in the School of Education at Syracuse University and the director of the Training Institute for Human Service Planning, Leadership and Change Agentry at Syracuse University. He was an internationally renowned and often controversial scholar, activist and prolific author in the field of development disabilities. A major early promoter and organizer of community services for the mentally retarded, he worked tirelessly to liberate societally devalued people from oppressions and improve their social position. He popularized the principle of normalization in North America, formulated the concept of Social Role Valorization, and founded Citizen Advocacy, which recruits ordinary citizens to act as unpaid voluntary individual advocates for vulnerable persons. His books, which have been translated into 11 languages, include Changing Patterns in Residential Services for the Mentally Retarded, PASS and PASSING, as well as The Principle of Normalization which in 1991 was ranked #1 in the “Education and Training in Mental Retardation” list of 25 classic works in the field.
Dr. Wolfensberger was born in Mannheim, Germany, in 1934, the son of Friedrich and Helene Wolfensberger. He immigrated to the United States in 1950. He earned a BS in Philosophy at Siena College in Memphis, Tennessee, an MS in Psychology at St. Louis University and a Ph.D. in Psychology and Mental Retardation from Peabody College (now part of Vanderbilt University). He was on the faculty at the Nebraska Psychiatric Institute of the University of Nebraska Medical School in Omaha from 1964-71. From 1971 – 1973 he was a visiting scholar at the National Institute on Mental Retardation in Toronto, Canada.
Dr. Wolfensberger held the title of US chess expert, was active in documenting the history of his family and loved cats and song. He was a member of the Unity Kitchen Community of the Catholic Worker and a founder of the l’Arche community in Syracuse. He is survived by his wife of 51 years, Nancy Artz Wolfensberger; daughters, Margaret (Tim) Sager of Philadelphia and Joan (Kurt) Lloyd of Chicago; son, Paul (Patrice) of Knoxville, TN; grandchildren, Tate, Jennifer and Hadley Sager; sister, Marian (Henry) Jarzombek of Rhode Island; sister-in-law, Gisela Meckel Wolfensberger of Germany; aunt, Hadwig Mannheimer of New York.
A funeral Mass will be held at 10 a.m. on Saturday, March 5, at the Cathedral of the Immaculate Conception, 259 East Onondaga Street in Syracuse. On Friday, March 4, calling hours will be 4 to 6 p.m. with a vigil service 6 to 7 p.m. at All Saints Church, 1340 Lancaster Avenue in Syracuse. Interment will be in Indiana.
Contributions, in lieu of flowers, to Citizen Advocacy Foundation of America, c/o S. Thomas, 231 Miles Ave., Syracuse, NY 13210.
Fairchild & Meech DeWitt Chapel in charge of arrangements.
http://obits.syracuse.com/obituaries/syracuse/obituary.aspx?n=wolf-wolfensberger&pid=149061423
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