Language surrounding “Alzheimer’s”
Driving home the other day, I turned on the radio and caught the end of a radio news broadcast concerning “Alzheimer’s.” (Note: I put the quotes around Alzheimer’s because my experience is that this term is too often loosely thrown around as a label or confirmed diagnosis, both by non-professionals as well as human service workers and even doctors, though there is no way to definitively diagnose it [see here or here or here for example] before someone’s death. At most, “Alzheimer’s”-like symptoms may be able to be identified in a particular person. Because it has become such a terrifying label to many people and is used to justify dead-talking people as well as other extreme measures, I try not to use it when other terms [senility for example] may be just as descriptive while hopefully somewhat less fear-inducing and/or devaluing.)
Back to the radio news show: I was taken aback by the use of language that basically served to cast certain people into devalued roles and to stir up fears and devaluing attitudes in the listening audience. Some of the language I heard in a quick radio segment included words and phrases such as
• victims
• suffering
• drain on economy
• burden
• prevent suffering
• fade to darkness
And so on. Obviously, this was not an exhaustive, scientific nor even intentional survey. I just happened onto that radio segment. Nonetheless, this is at least in part my point. Social Role Valorization describes how language communicates certain roles, images, expectations and thus contributes to creating certain mindsets in people: either positive or negative.
How often are we hearing or reading such language around “Alzheimer’s:” in the news, from our neighbors and co-workers, and so on? As well as being clinically inaccurate, it sets up vulnerable elders as well as people with Down’s syndrome to be more likely to be negatively perceived and thus negatively treated by others. Such negative treatment can include mind drugging, low expectations, institutionalization into nursing homes and/or placement into so-called adult day health programs, and so on. What are elders being taught about themselves? What are young people learning about aging and elders? It’s certainly not good for them or for our society.
What examples of such language have you heard recently?
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workshop announcement: evolution of Social Role Valorization
one day workshop on ‘The History and Evolution of Social Role Valorization and Its Current Practice’
12 November 2011
Syracuse, NY (US)
contact Susan Thomas at 315 473 2978
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article: ‘Pain underestimated by doctors for some patients’
Jane Barken, a professor at Loyalist College and member of both the North American SRV Council and the Southern Ontario Training Group, sent me a link to this CBC News article, pointing out that it has connections to the SRV theme of interpersonal identification. The article generally concerns a study done on how clinicians perceive and treat pain level as reported by patients. More specifically: “A University of Northern B.C. professor who is studying the impact of the clinician-patient relationship on how health professionals rate pain suggests it decreases if the clinician doesn’t like the patient.”
As we teach about in SRV, personal devaluation is likely to change the perception and subsequent treatment of the devalued person. In a situation where the person who devalues has power over the devalued person, this puts the devalued person in a vulnerable position to be badly treated. Social devaluation predictably causes negative consequences, negative treatment and ‘wounding’: “It means people with invisible pain — such as bad backs, as opposed to broken legs — may not get adequate treatment for the problem if the doctor disregards their feelings.”
In this study, clinicians were first shown photos of patients with apparently positive or neutral or negative personality traits, and second were shown videos of these same patients in pain. “The participants consistently rated the pain of patients associated with the negative traits, such as egotism and hostility, lower than the likable patients.” Those patients who were seen as unlikable were perceived to be in less pain (in comparison with patients seen as likable) and therefore were not adequately treated for pain.
The professor who ran the study commented on the importance of stepping into the shoes of other people, of trying to see things from their perspective. The idea of interpersonal identification in SRV theory is that if we can see ourselves in another person or see similarities, then we are more likely to want good things for that person and are more likely to do good things for that person (pp. 118-120 in the SRV monograph rev. 3rd ed. authored by Dr. Wolfensberger).
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Safeguards Letter
Jack Pealer from Ohio Safeguards has just published #51 of The Safeguards Letter, a publication well worth getting. The Letter includes stories, thoughtful quotations, reflections, announcement of upcoming training, reminiscences, poetry, mentions of books and authors, and so on. The recent issue has a memorial reflection on Wolf Wolfensberger, including ‘3 big ideas’ which Jack learned from Wolf’s work.
I strongly urge you to subscribe and to set aside time to sit quietly and read the Letter. To subscribe, email jackjr441@earthlink.net.
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Ray Lemay: SRV and bridge building
Ray offered a necessary reminder that the efficacy of valued roles opening the door to the ‘good things of life’ is dependent on what the particular culture or society actually has to offer in terms of the ‘good things of life.’ A society cannot offer what it does not have. We should concretely understand specifically what ‘good things of life’ the particular society we are in has to offer. Particular cultures/societies have specific ‘good things of life’ which are typically available and associated with a range of concrete valued social roles. Human services even in the ideal cannot, and should not attempt to or believe that they are able to, replace the ‘good things of life‘ which vulnerable, societally devalued people will benefit from. This is part of the essence of the power of the culturally valued analog concept.
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Susan Thomas: Situating SRV in the larger social/societal context
This morning, day 3 of the SRV conference in Canberra, Susan Thomas started the day with a plenary. One of Susan’s key points focused on the largely post-production service-based economy found in most western countries, and how these economic systems/dynamics largely work against the role valorization of vulnerable people in general. These dynamics are rooted in conscious and unconscious economic motives, which make it highly difficult and incredibly costly for families, individual service workers and service organizations to resist and/or counter these systemic problems. SRV cannot change this economic system, though it may be able to protect individual people and some groups if servers work hard over the long-term to apply SRV on behalf of vulnerable people. Susan asked us to consider which particular valued roles are most protective of people during times of danger, emergency, calamity, high stress, etc.
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Mitchel Peters: Citizen Advocacy and valued roles
Mitchel gave a brief overview of the Citizen Advocacy model. His main thesis was that the primary mission of Citizen Advocacy is generally to safeguard the welfare of a vulnerable person through one-to-one (or near one-to-one) reciprocal relationships, but in addition that a derivative benefit can be that the protege acquires or maintains valued social roles. To illustrate this, he laid out a framework connecting the model of Citizen Advocacy and SRV theory, backed up with several CA vignettes. Watch future issues of The SRV Journal for this paper. Mitchel is the chairperson of Citizen Advocacy Eastern Suburbs in Perth, Western Australia. He has been involved in Citizen Advocacy for over 20 years, having started work at Citizen Advocacy WA (now known as Citizen Advocacy Perth West) in 1989. In the mid-90s, he was a founding member of Citizen Advocacy Eastern Suburbs, and then its first co-ordinator.
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Janet Kleese: The nature of contribution
Janet shared several stories as well as an analysis of the nature of contribution, particularly contributions from and by societally devalued people in valued roles in typical contexts.
Sharing of gifts and personal contributions are made by people in valued roles, in relationship to and with others. For devalued people, given the layers of social and societal devaluation surrounding them, such contributions often need to be drawn out by others’ strong, positive expectations. These contributions by societally devalued people are so often transformative of relationships and expectations, especially as they accumulate and mutually reinforce each other, thus helping to open the door to the ‘good things of life.’
In thinking about Janet’s presentation, I am thinking about important questions such as: how can we best build on existing valued roles to help a person make, and be recognized for, contributions to others? Do particular valued roles in particular categories (e.g., work, home, leisure, education, etc.) lend themselves more to devalued people making positive, recognized contributions? How can we help to respectfully highlight the contributions that societally devalued people make so that they are seen and seen positively by people in valued status, by those people who can make available the ‘good things of life’?
Janet Kleese is involved with Legacies Inc. and the Deohaeko Network in Canada, and long been a student, teacher and practitioner of the ideas of Wolf Wolfensberger, including SRV.
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Tom Doody: The possibility and desirability of Citizen Advocacy
Tom spoke about Citizen Advocacy as developed by Wolfensberger in the 1960s in Nebraska (US). He described Citizen Advocacy as a coherent service model (model coherency described in SRV: are the right people doing the right things in the right way with the right tools for the right people?) which acknowledges and addresses vulnerability, particularly the hinge wound of rejection.
Tom emphasized the importance of regular evaluation of Citizen Advocacy programs by CAPE (Citizen Advocacy Program Evaluation), an evaluation tool that incorporates and assesses CA programs by relevant and potent core principles, principles that have been shown by decades of experience to work in inviting and supporting lasting advocate-protege relationships.
An SRV parallel of course is the PASSING evaluation tool. For those of us involved in offering informal or formal service to vulnerable people, are we actively seeking regular external evaluation of our service efforts, especially in the form of PASSING evaluation?
Tom is co-coordinator of North Quabbin Citizen Advocacy (Massachusetts, US) and has been involved in teaching SRV and PASSING for decades. He is a member of the North American SRV Training, Safeguarding and Development Council.
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Rosey Olbrycht: Citizen Advocacy, valued roles, access to the ‘good things of life’
Rosey spoke about the power of Citizen Advocacy relationships in terms of wounding and devalued roles, and the link between valued roles and access to the ‘good things of life.’ Rosey is from Citizen Advocacy South Australia, and she described some proteges as having devalued roles of thief, liar, user of the system, user of other people, prostitute, hobo, and so on. Proteges have experienced wounds such as homelessness, physical and sexual abuse, abandonment, denial of education, rejection and social discontinuity through multiple foster care placements, institutionalization, rejection right out to the edge of society and even survivability, being put in jail. Impacts of these wounds include anxiety, insecurity, poor health, confusion as to who to trust, distrust of authority, fear of relationships.
Citizen Advocacy relationships have helped vulnerable proteges to get valued roles such as family friend and neighbor, and to have greater access to the ‘good things of life’ such as protection in the hospital, getting out of jail, being hospitably welcomed by others, safety and trust in and from others, and so on.
Do we see, understand and try to build this link between valued roles and access to the ‘good things of life’?
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