‘Tiniest patients discover meals made to order:’ NY Times article

A 16 January 2011 NY Times article entitled ‘Tiniest patients discover meals made to order‘ underscores several points made in Social Role Valorization and the PASSING manual. The article describes recent efforts at improving hospital food: hiring highly trained chefs, offering room service-type flexibility, duplicating patients’ favorite recipes, and so on.

Meals and food are so important to us for a variety of reasons, and even more so when we are sick. Meals of course fill a biological need for food (cf. PASSING manual, R231 service address of recipient needs) but can do so much more: help to make us happy and more comfortable (cf. PASSING manual, R213 physical comfort of setting); bring back memories of good times, family and holidays; bring us together with our family and friends; and so on.

We all have favorite foods and preferences. The article describes efforts to bend over backward to accommodate patient meal preferences (cf. conservatism corollary of SRV; see also PASSING manual, R224 service support for recipient individualization and R133 promotion of recipient autonomy and rights):

• “So Pnina Peled, the executive chef at Memorial Sloan-Kettering Cancer Center, makes Julien his beloved shrimp scampi with Promise, a butter substitute, and eggplant Parmesan using egg whites, whole-wheat bread crumbs and soy cheese … After he rejected the hospital’s whole-wheat ravioli, she hauled her pasta maker on the subway from Brooklyn to roll out a handmade version. ‘She came in on her day off with a stack of cookbooks and sat with us to come up with a menu for him,’ Julien’s mother, Jacqueline Collot, said …”

• ” ‘There’s no substitute for a good diet, and appetizing food can make all the difference,’ said Dr. Susan Prockop, a pediatric oncologist at Sloan-Kettering, noting that eating well can speed recovery and keep patients off intravenous nutrition.”

• “Enter Chef Peled or one of her three sous-chefs, who spend an hour each afternoon meeting with pediatric patients and their parents to discuss food preferences. (Adult patients at Sloan-Kettering can also make personalized requests …”

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“The college of choice for students with learning disabilities and/or AD/HD”

An article in the 9 January 2011 EducationLife insert of the New York Times described Landmark College: “The college of choice for students with learning disabilities and/or AD/HD.”

Landmark is a two year college in Vermont (US), costing $48000 USD annual tuition. They have 500 students. According to the article, half are recent high school graduates, the other half have tried and failed at regular colleges already. Landmark has 1 teacher for every 5 students.

What results do they have? According to the article, roughly 30% graduate from Landmark. “Of those who received associate degrees and transferred to four-year institutions over the last five years, about a third dropped out, according to data gathered by Landmark. The rest have either graduated or are still working toward bachelor’s degrees.” (p. 18) It would be interesting to compare this to results from more typical colleges of similar size.

The article also mentions Beacon College in Florida (US): “The only accredited college offering BA and AA degrees exclusively for students with learning disabilities, ADHD, or gifted LD.”

Role of college student: Consider the college student role. What expectations, responsibilities and behaviors are part of that role? What ‘good things of life’ does the college student role open the door to? What image and competency enhancement strategies can help to support an individual or group of adults in the college student role?

Heightened vulnerability: What are the students who attend Landmark likely to be vulnerable to? Consider vulnerability in terms of negative stereotypes, devalued roles, lowered expectations, limited opportunities, physical and social distantiation, and so on.

Imagery: The article contains several photos of students. SRV teaches how to look at imagery issues from several angles (setting, personal presentation, grouping, language, etc.). Where are the students in the photos? What possessions do they have? What captions accompany the photos? Do these images reinforce or counter any negative stereotypes of young adults with intellectual impairments and/or functional impairments related to learning? Remember that SRV advocates not only starting with a baseline of what is typical (in this case, typical for college students) but advocates for ‘bending over backwards’ and aiming for what is ideal.

Competency enhancement: The article describes at least some of the college’s educational practices, which relates to the SRV issue of competency development and enhancement (which includes aspects such as grouping, teaching techniques, role modeling, interpersonal interactions, etc.). Do any of these described practices exacerbate heightened vulnerability to further wounding and societal devaluation, and/or heightened vulnerability to the impacts of wounding and devaluation? Do any of these practices counter heightened vulnerability?

Valued social roles: Taking both image and competency enhancement into account, in what ways does Landmark support or even approximate the college student role? In what ways does Landmark fall short of or even obstruct the college student role?

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Roles, expectations, segregation and Israel/Palestine

A December 2010 Time magazine article used role language and other SRV-consistent language to describe the negative long-term effects of the physical and social separation between Israelis and Palestinians brought about by the ‘Wall’: a 400 mile system of fences, barricades and military checkpoints. (I understand that the Israeli/Palestinian conflict is a long-term development with roots in war, politics, religion, history, language, culture and so on. I am only pointing out a few basic SRV-relevant points which I took from reading the article, particularly as I was struck by the role language used.)

• Consider how mind-sets and expectancies are shaped, particularly by powerful, early and consistent experiences. The following quote concerns a young Palestinian schoolboy, Ramzi, recalling his first encounter with an Israeli soldier: “Ramzi took what he could from the encounter–the soldier was brusque and belligerent, he recalls–and remained alert for further information” (p. 50). Note Ramzi’s alertness for further information: how much we learn consciously and unconsciously from our interactions, image messages, settings we are in, and so on. And a related quote: “The young soldiers … afforded a viewing opportunity for young Palestinians who would henceforth know Israelis only as soldiers and settlers, the newly installed Wall having barred exposure to any other kind” (p. 50). What can this help us learn about physical and social separation; about distantiation brought about by physical or social barriers, or by particular (devalued) roles? Where do we see similar patterns in human services? “Whatever lies behind (the Wall)–enemy, oppressor, kindly cashier–is largely a matter of speculation to those born … between … 1993 … and … 2000” (p. 51).

• Mindsets and expectancies: “No less important, (the Wall) has created a separation of the mind. Israelis say they simply think much less about Palestinians. And a generation of Palestinians is coming of age without even knowing what Israelis look like” (p. 51).

• Interpersonal identification: “The absence of familiarity, names, basic knowing–the absence of the foundations of empathy–does not bode well for the chances of the two peoples one day living as neighbors in peace” (p. 51).

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Equal Justice Initiative

We recently received an annual report from the Equal Justice Initiative, an organization that primarily works with poor defendants/prisoners who have not received fair treatment in the US court and corrections systems. One of their major areas of concentration is on capital cases, i.e., death penalty cases. I want to focus in this blog post however on one section of the report which deals with their work with juveniles (defendants/prisoners under 18 years old).

Background: According to a US federal study, approximately 14,500 juveniles were in adult prisons and jails in the year 1997. (Note that this number is low, as the US Federal Bureau of Prisons and several state prison systems refused to take part in the study.) This number increased each year from 1989 to 1997. (According to the Campaign for Youth and Justice, that number now averages around 11,000 on any given day.) In 1997, forty-four US states imprisoned juveniles in adult facilities, of which only 18 states put juveniles in separate units from adults. These young people are much more vulnerable to harm and long-term deleterious effects from typical prison practices and conditions such as isolation, physical and chemical restraint, abuse from staff, lack of adequate health care and education, etc.

A few points jump out from an SRV perspective:

• The heightened vulnerability of children in prisons, particularly those sent to adult prisons but also those in juvenile correctional facilities, where they are for example at much higher risk of sexual assault.

• Equal Justice Initiative (EJI) works on both a personal as well as a societal level to try to reduce the devaluation and negative treatment of juveniles in adult prisons. They defend individual juvenile clients, some as young as 13, but also have argued successfully in the US Supreme Court for a broader legal prohibition against life sentences without parole for juveniles (note the efforts on the individual and societal level; cf. the chart in Wolfensberger, 1998, 78-80). This opens the possibility that at least some currently incarcerated young people will be released someday, thus getting them out of the prisoner role. And others in the future will be protected from gaining the lifelong prisoner role. Part of EJI’s rationale is that from a developmental perspective, children have a greater potential for potential change, including positive moral change.

• Prisons and jails are obviously based on the correctional model. From an SRV perspective, reflect on these three points:

1) Consider the possibility that “Some models may be morally or technically flawed in their very essence, because they build on fundamentally false assumptions” (Wolfensberger, 1998, 116). What assumptions lie behind the practice of incarcerating juveniles in adult prisons?

2) Consider the model incoherency of an adult prison system that incarcerates juveniles. Think about model elements such as the staff, assumptions, settings, grouping and processes. How are these elements mismatched in terms of the identity and needs of the young people?

3) “One potential sign of model incoherency is if a model does not make sense to members of a culture” (Wolfensberger, 1998, 117).

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September 2010 issue of CRUcial Times (Australia)

I recently received the September 2010 issue of CRUcial Times published by CRU Inc. in Brisbane, Australia. I recommend getting on their email list to receive this publication. Back issues are also available. Below are some of the SRV-related lessons I took away from just two of the articles in this issue:

Leading the change for older people in the community by P. Hambleton and L. Sullivan

• heightened vulnerability of elders

• separating programmatic and non-programmatic issues

• identifying and addressing people’s needs in order of priority (cf. the ‘foundation discussion’ process in a PASSING workshop)

• a mention of social roles (“supported to remain as closely connected to their … roles”)

Changing the perception of people with disability in the work force by L. Rolfe

• the necessity of high expectations, the importance of mindset (cf. the SRV theme of mindsets and expectancies)

• starting from the baseline of what is typical and valued in the society (cf. the conservatism corollary of SRV)

• importance of training for ‘servers’ (service workers)

• necessity of competency enhancement for societally devalued people (cf. one of the two major strategies of SRV)

• working at different levels (e.g., personal, family, unions, employers, systems, education)

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commentary: ‘Doing time, with a degree to show for it’

This commentary from the Chronicle for Higher Education relates to our recent post about imprisonment. A few SRV points from the commentary:

• The importance of competency enhancement in supporting devalued and vulnerable individuals/groups in valued roles: specifically, the importance of making university-level education available to prisoners

• The potential benefits of helping those in prison acquire and maintain the valued role of college student

• The availability of the ‘good things of life’ which can derive from the acquisition and maintenance of the college student role for prisoners, including: a job (when released), liberty (possibility of early parole/release), the opportunity to contribute to their communities and families (to regain the valued roles of citizen, of father/mother)

• Image enhancement: note the reference to one of the ex-prisoners who had been in the college student role while in prison: he was described as well dressed and with a Bluetooth headset in his ear (sending messages of similarity to other busy professionals, of affluence, of busy-ness, of competence, and of enough income to buy an expensive piece of technology)

• Supporting prisoners in the college student role acknowledges the high rates of recidivism and consequently tries to prevent re-imprisonment through competency enhancement and education (cf. the conservatism corollary of SRV, which calls for prevention, reduction and compensation for heightened vulnerability)

• The importance of a societal level strategy consistent with SRV: the national availability of funds for university tuition through Pell grants helped make it possible for prisoners in the US to acquire the valued role of college student (cf. SRV encompasses action on multiple levels: individual, primary and secondary social systems, larger society)

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op ed: ‘The prison boom comes home to roost’

This Boston Globe op-ed piece about prisons and the high rate of incarceration in the US raises many SRV relevant points, such as:

• the pervasive influence of non-programmatic factors, such as the employment and profit incentive behind the prison boom

• the link between impoverishment and imprisonment (particularly in light of societal devaluation and heightened vulnerability)

• how the valued roles of husband and father can be driven out by the devalued role of prisoner. Note that this example of ‘role destruction’ can occur whether we think the person is guilty or not, or should be imprisoned or not.

Given the societal and personal effects of imprisonment–especially in terms of societal devaluation, wounding, devalued roles, heightened vulnerability–it is well worth considering from an SRV perspective what positive difference(s) that access to valued social roles can make for individuals/groups.

• How are prisoners/ex-prisoners likely to be devalued? What societal values are they seen as contradicting or standing in opposition to?

• What wounds are prisoners/ex-prisoners likely to experience?

• What are prisoners and ex-prisoners vulnerable to?

• What ‘good things of life’ are prisoners/ex-prisoners cut off from (whether you believe they deserve it or not)?

• What valued roles can prisoners access, when and if they are released but even while in jail or prison? What ‘good things of life’ can they experience, when and if they are released but even while in jail or prison?

• What image enhancement and competency enhancement strategies can be used in prison and after release to help (ex) prisoners acquire, regain and/or maintain valued social roles?

• How can interpersonal identification between prisoners and guards be facilitated? How about between prisoners/ex-prisoners and typical citizens (e.g., such as potential employers, neighbors or landlords)?

Thanks to Ed Wilson for sending me this article.

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Newspaper article: ‘Starting Life Over’

This newspaper article could be the basis for a useful exercise for an SRV workshop or in a college class. It touches on a class of societally devalued people and related service structures that will likely become more prominent in certain places; namely, people with ‘acquired brain injury.’ At least in the US for example, the number of veterans returning from Iraq and Afghanistan with brain injuries is growing, and so are the number of related services as well as government funding for such services. Those of us teaching Social Role Valorization and PASSING related material should be aware of these developments.

Some questions that could be used with workshop participants or college students include:

• What valued social roles are named or described in the article? What good things of life might these valued roles open the door to for a societally devalued person?

• How is the PASSING issue of grouping and competency raised in the article?

• Identify the images and language used in the article, and the ways in which they communicate either similarity to or difference from other people?

• Are any non-programmatic issues discussed?

• What expectations and mindset does the mother hold?

If you come up with other questions, send them along and we’ll post them.

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Robot teddy bears for elders

This article and this one minute Japanese video describe a robot teddy bear:

The hope is to use them for “robot therapy” in geriatric medicine for patients that suffer from dementia, says Fujitsu.

In SRV workshops, we teach about the devalued role of child for elders (‘second childhood’). Teddy bears are typically associated with quite young children. The robot teddy can place vulnerable elders into the role of child again, in the minds of their staff, family and any visitors for example.

In SRV workshops, we also teach about the practice of ‘animal or pet therapy,’ bringing a pet dog or bunny to a nursing home for the nursing home residents to spend time with, ostensibly to calm them or ‘make them happy.’ One of the SRV-based concerns about this common practice is the association of societally devalued people with animals in a way that is likely to cast vulnerable people into the animal role. Another fundamental problem with such ‘pet therapy’ practices is that it all too often displaces human presence, companionship and relationship. (Consider what the common unconscious assumptions behind such a practice might be; e.g., devalued people do not need, want or deserve human relationship.) Perhaps this robot teddy is a high-tech version of that practice.

Consider also the robot teddy both in terms of image and competency:

• What images are communicated about elders with dementia, particularly in light of the common negative stereotypes surrounding dementia?

• What does having a robot teddy bear which is built to respond to external stimuli (such as noise or a hand waving) do for someone who is confused perhaps about their surroundings, has trouble processing or remembering information, or is sometimes confused about who and what is real?

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What are you reading (or watching or listening to)? #3

In our ongoing series of posts about favorite SRV resources, here are a few suggestions from Jane Sherwin, a Social Role Valorization trainer in Australia. Please send us your favorites and suggestions to us and we’ll mention them in future posts.

• Wolfensberger, W. (2000). A brief overview of Social Role Valorization. Mental Retardation, 38(2), 105-123.

• Wolfensberger, W. (1995b). An “if this, then that” formulation of decisions related to Social Role Valorization as a better way of interpreting it to people. Mental Retardation, 33(3), 163-169.

• Lemay, R.A. (1995). Normalization and social role valorization. In A.E. Dell Orto & R.P. Marinelli (Eds.), Encyclopedia of disability and rehabilitation (pp. 515-521). New York: Simon & Schuster Macmillan.

• ‘An Overview of Social Role Valorization Theory’ by Joe Osburn (Osburn, J. (2006). An overview of Social Role Valorization theory. The SRV Journal, 1(1), 4-13.)

• Kendrick, M. (1994). Some reasons why social role valorization is important. SRV-VRS: The International Social Role Valorization Journal. 1(1), 12-16.

• Videos with Janet Klees on YouTube

• Sherwin, J. (2008). Acceptance and belonging: The helpfulness of being in valued roles. Family Advocacy 3(7), 2-3.

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