‘Bent, not broken’ article in NY Times

This NY Times article about a teacher has some good potential as a teaching exercise: in a workshop, staff meeting or university classroom. It can be used to raise questions and issues relevant to Social Role Valorization, such as:

• What language is used to refer to the person who is the main subject of the article? What roles does such language communicate?

• What are Ms. Manderson’s primary social roles (valued and devalued), in terms of amount of time spent in the role, visibility, etc.? Which of her social roles are more competency-based and which are more attributed? What good things of life have her valued roles opened the door to?

• What expectations do others have for Ms. Manderson? How might these expectations have been shaped? How might any positive expectations be reinforced? How might any low expectations be countered?

• How would you describe her heightened vulnerability, both now as well as projecting into the future?

• Consider the involvement of paid staff (e.g., home health aide) in her life: what are the potential benefits and limitations vis-a-vis acquiring and maintaining valued social roles (such as wife and teacher)?

• Reflect on the importance of personal appearance to having valued social roles (and how does personal appearance connect with cultural expectations, e.g., how about her earrings? how about her nose ring?).

• What challenges and questions does this article raise for you, e.g., a) in your own service involvement, b) as a parent, c) as a typical citizen?

• What can you learn from this example that can be helpful in terms of your own service role and involvement?

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Book notice #3

If you haven’t gotten your hands on it yet, I recommend reading the 2009 book from Wolfensberger:

Wolf Wolfensberger. Observing, Recording and Addressing Personal Physical Appearance by Means of the APPEAR Tool. Syracuse, NY: Syracuse University Training Institute for Human Service Planning, Leadership and Change Agentry; Plantagenet, ON: l’Institut Valor Institute.

For those of you familiar with the PASSING manual, this new book is set up to be used as an assessment tool, complete with checklists. My sense is that it will be helpful as an assessment tool but also as a way of learning more about SRV, by really focusing in on personal presentation and imagery issues. Watch the SRV Journal for a review of the book but in the meantime, read it yourself.

Abbreviated Table of Contents:

Acknowledgments

Introduction

The Rational for Making Personal Appearance Audits, Especially for Persons at Risk of Social Devaluation

The Impact of Personal Appearance on Perceivers and the Perceived

The Typical Appearance Problems of Societally Devalued People

Major Strategies for the Enhancement of Personal Appearance

Discovering, or Determining, Appearance Features of a Person That Could Be Improved

Preliminary Considerations to Know and Review Before Selecting an Action Measure

Deciding Which Specific Action Measures to Pursue

Who Might Attend to a Person’s Appearance?

The Debate Over Whether Efforts Should Be Made at All to Improve the Appearance of Impaired or Otherwise Societally Devalued People

Limitations of the APPEAR Recording Form and Checklist

References

Instructions for Use of the APPEAR Recording Form and Checklist

Identifying and Background Information on the Person Whose Appearance is Being Audited

The APPEAR Checklist Items for Observing and Recording Personal Physical Features

I. Head

II. Body

III. Global Appearance Characteristics

IV. Attire and Accessories

V. Any Other Relevant Observations That Did Not Emerge Sufficiently in the Above Categories

Actions Recommended/To Be Taken

About the Author

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“After stroke, a poet hunts for the language lost”

Becoming more competent is generally good in and of itself, even if an acquired competency seems to have no immediate or practical benefit. This 27 June 2010 NY Times article illustrates this and other SRV relevant points.

• After a stroke, the published poet Marie Ponsot found she could not remember poems she had been reciting for much of her life. So she tried to recall one of the first things she ever memorized–the Lord’s Prayer–but was unable to get past the first phrase. Then she tried to remember the prayer in French, the language she first learned it in, but the same thing happened. At that point, a mental picture came into her mind of the page in her Roman Missal (prayer book) containing that prayer. She could not see the words themselves in her mind, but only the decorative border on the page. So she tried reciting the prayer in Latin…and she was able to say the entire prayer, in Latin. She then began to translate the prayer from Latin back into English in her mind, and at a certain point was able to say the whole prayer in English. (Pay attention, those of you who studied Latin or other languages as a child and complained about it, or who are critical of memorization as a part of learning–it just might come in handy!)

• Our valued roles can protect and help us in myriad ways. After her stroke, Ms. Ponsot’s valued role as poet has done just that. A group of poets have been freely coming to her apartment to read and talk with her, which has helped her memory to come back bit by bit, among other benefits surely.

Access this site to read some of Ms. Ponsot’s poetry.

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online resource: updated Social Role Valorization website

John Armstrong has updated his Social Role Valorization website. Check it out! I know that he will be adding new material over the coming weeks… Also check it regularly for information about the SRV International Conference in Australia in September of 2011.

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Deinstitutionalization of People With Developmental Disabilities: A Review of the Literature

A good article for those teaching and implementing SRV, especially given the influence which SRV and normalization have had on deinstitutionalization efforts in North America:

Deinstitutionalization of People With Developmental Disabilities: A Review of the Literature by Raymond A. Lemay

CANADIAN JOURNAL OF COMMUNITY MENTAL HEALTH VOL. 28 NO. 1, SPRING 2009 (181-194)

http://www.turningforward.org/documents/Lemay2009-Deinstitutionalization.pdf

Major headings in the article:
• PARENTS AND DEINSTITUTIONALIZATION
• MORTALITY
• ADAPTIVE BEHAVIOURS
• COST BENEFIT
• QUALITY OF LIFE CONDITIONS AND EXPERIENCES
• SOCIAL RELATIONSHIPS
• CHALLENGING BEHAVIOURS

A few relevant quotes:

“The analysis is generally informed by normalization and social role valorization theory (Lemay, 1995, 1999, 2006; Wolfensberger, 1972, 1983, 1998); thus the findings may be applicable to other populations with severe disabilities.”

“Reviews of program evaluation data using PASS (Program Analysis of Service Systems; Wolfensberger & Glenn, 1975) and PASSING (Program Analysis of Service Systems’ Implementation of Normalization Goals; Wolfensberger & Thomas, 1983, 2007) that measure QLCE have consistently found that community residential services do significantly better than institutional settings (Flynn, 1980, 1999; Flynn, Lapointe, Wolfensberger, & Thomas, 1991). Though community settings do better in these studies, they do not achieve high scores of quality or excellence, averaging less than 50% of the possible score. Indeed, Perry and Felce (2005) found much variability in the quality of the living arrangements of 154 people living in 47 different community residences in the UK.”

“Lemay (2006) argues that the community is rich in role opportunities and relationship possibilities, but social integration requires a deliberate and well-thought-out strategy to move individuals with developmental disabilities out of their social isolation.”

“People, irrespective of their degree of disability, are apt to do better in the community on most measures and do no worse when it comes to challenging behaviours. Moreover, these findings suggest a serious underperformance by community-based services, which can be addressed through systematic training approaches that teach staff and family members the attitudes and competencies required for taking advantage of community living.”

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Menace role and Pennhurst

Thanks to Guy Caruso for sending me the link to this article about a proposal to build a Halloween haunted house attraction on the former grounds of the Pennhurst State School and Hospital in Pennsylvania, US.

In SRV, we consider the power of negative stereotypes surrounding societally devalued people, including how our actions (consciously or unconsciously) can either counter or reinforce such negative stereotypes. We also take into account the devalued role of menace. Keep these ideas in mind as you read the article. From an SRV perspective, we might think about such questions as:

• If built, who would go to the haunted house attraction?

• What emotions and ideas would be put into the minds of those going to the attraction?

• How would these emotions and ideas be juxtaposed with the types of people who had been incarcerated at Pennhurst (and similar places around the world)?

• How would these emotions and ideas likely influence the way such societally devalued people are perceived and treated?

(See the SRV monograph by Wolfensberger and the PASSING manual by Wolfensberger and Thomas for more on heightened vulnerability, stereotypes, image juxtaposition and devalued roles. See also Wolfensberger’s monograph on institutions.)

Other relevant links:

• Pennhurst Memorial and Preservation Alliance

• historical and contemporary info about Pennhurst, including a video

• Pennhurst School and Hospital: Abandoned but not Forgotten

• Pennhurst US Supreme Court case

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NY Times article: ‘My Brother’s Keeper (Assembly Required)’

The NY Times ran a column on August 22 in an ongoing series of columns entitled ‘Modern Love.’ This particular column was by a sister describing her brother with Down’s syndrome.

* Reflect on how her brother is described in the column. How is he described as spending his days? Think about what roles and activities are not mentioned: what are we also learning about John because of what he does not do, which most other people his age are doing? How do these different descriptions, even if largely unconscious, either counter or reinforce negative stereotypes about impaired people?

* Consider some of the language used in the column:

• burdens

• reluctant

• keeper

• educable

• Down syndrome

• Lennie from Steinbeck’s ‘Of Mice and Men‘

• St. Joan (the author referring to a paid staff person)

• oversees

• tolerate

• surrogate mom (the author John’s sister referring to herself)

What sort of perception and treatment of John does such language invite?

* How does the author write about her mother, even if briefly, in the opening two paragraphs? What role(s) does she portray her mother in?

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What are you reading (or watching or listening to)? #2

Our next ‘watching’ suggestion is from Zana Lutfiyya who teaches SRV and related ideas at the University of Manitoba. See Zana’s suggestion below. Send us your suggestions!

“The documentary ‘Including Samuel‘ is an excellent resource when thinking about valued social roles etc for school age children with disabilities. Samuel is a boy who was born with cerebral palsy (well, acquired at birth). His father, a documentary film maker, made this chronicle of his family’s life together. In it, the father documents his own prejudices about people with disabilities, and how he had to face these as he saw his own son grow up. He also goes in search of adults with disabilities who might serve as role models for his son (and especially, as role models for Samuel’s parents). There are several vignettes with others with a variety of disabilities (cerebral palsy, mental health problems, intellectual disability) who talk about their own lives and the opportunities that they have enjoyed. There are also snippets from various experts, including Doug Biklen. Jan Nisbet and Cheryl Jorgenson.

Samuel enjoys a close connection with his parents and especially his brother, Isaiah. It is refreshing to see how close they are, and in particular, how close the two brothers are with each other.”

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Deportation of the Roma from France

In SRV workshops, we begin by teaching about the most common wounds of societally devalued people. One of the most common forms of wounding is rejection. We talk about rejection as a hinge wound, in that it likely opens the door to other wounds. One of the wounds that rejection can result in is that of distantiation, often via segregation and congregation.

Recent news from France describes the deportation of the Roma:

http://www.novinite.com/view_news.php?id=119339

This is occuring alongside calls from the European Union for ‘integration’ of the Roma:

http://www.novinite.com/view_news.php?id=119329

In addition to societal devaluation, these two competing dynamics speak to a high level of unconsciousness.

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What are you reading (or watching or listening to)? #1

We thought that it might be useful to share what people interested in teaching about and applying SRV are reading, or watching, or listening to. What are the books, movies, articles, etc. that get used to teach others about SRV or help inspire others to apply SRV?

Let us know what you are reading and watching, and we will post more ideas in the future.

In the meantime, below are a few items submitted by Bill Forman, an SRV teacher in Alberta, Canada. Check out Bill’s blog at:

http://web.me.com/billforman1/Bill_Formans_Website/Blog/Blog.html

• Is There No Place on Earth for Me, by Susan Sheehan, the story of a woman who becomes ensared in a mental health system

• The Grass Arena, an autobiograpy by John Healy, a man who escapes a life on the streets of violence and alcoholism by learning chess in prison and becoming a chess master when he leaves. The latter is not as romantic as it sounds. It points out the power, but also the benefits of roles.

As to films, there is one from the early 80’s called • Breaking Through, about 2 young men leaving an institution in B.C. Dr. Wolfensberger wrote a guide to using it in SRV teaching.

• And Then Came John.

• The Elephant Man, directed by David Lynch.

• Praying with Lior, about a young man with a developmental disability making his Bar Mitzvah.

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