Remembering My Hat

19th September 2013

Bi Visibility Day: Over-50s event in London

I’m so delighted that this year Opening Doors London and activists from the UK bi community are getting together to organise an event for over-50s as part of Bi Visibility Day, the 23rd Sept (I’m posting a little early, in case it helps publicise the event).

You can get all the details here but I just want to mention their excellent slogan ‘old enough to have made up our minds’.

That’s such a good riposte to the common charge that bisexual people are indecisive and will eventually ‘make up our minds’ and settle for attraction to only one gender, whether that be the same as our own or different. One of the things everyday ageism does is to characterise older people as fixed and rigid in their habits and thinking. But a more positive spin on that is as not-indecisive and as having made up our minds. I love the way this slogan plays with and combines the two.

(cc) salanki

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13th September 2013

BSG 2013, Oxford, Part 3

Partial and particularly incomplete notes from a conference. Part one here and part two here

Symposium: Using the Arts to humanise healthcare education about people with dementia

Sherry Dupuis, University of Waterloo, Canada

The pedagogical possibilities of research-based drama in dementia care

Project came out of desire to resist dominant popular discourses of dementia ‘shell of himself’ ‘burden of care’ ‘long goodbye’ ‘36 hour day’ ‘loss of self’ as well as bio-medical versions.

Looking at effects on audience members  – how images and actions changed for families and workers of PWD over a one year period, after seeing film called ‘I’m still here’ – research based drama – script much from transcripts of interviews, result of collaborations with PWD, workers, actors and playwrite.

(cc) Nico Macdonald

Pre and immediately post-performance focus groups (n=106 people)

Interviews 6 weeks and 12 months after viewing (no.s reduced at each stage as you’d expect to 83 at end)

Participants had vivid memories at 6 weeks – feelings of compassion and better understanding of PWD’s perspective. Talked about scenes flickering into their brains months later. Expanded perspective, deepened understanding

Some people felt they are unchanged because already knew this – affirmed their existing awareness. But often in the interview they then went on to talk about ways they had changed [this is surely about face and presenting yourself as a competent member to start with – dynamics of interview].

Some evidence of changed behaviours as a result – family members joking more, recognising humour in situations + focusing more on person, not trying to get other jobs done at the same time. Care workers talked about checking for UTIs more, having a better admission form, running support groups for families.

Cathartic experience for some family members, transformative healing process, emotional release.

DVD and teaching-learning tool available from www.marep.uwaterloo.ca

New study will do observational work in care homes about whether it actually changes care worker’s practices. There is some evidence of practical changes already e.g. policy changes, support group set up etc.

Dialogue with others after the performance was really important for deepening learning.

 

Ruth Bartlett, Univ of Southampton

Agnes & Nancy – a short film about two women with dementia

A documentary film she commissioned. Comes out of her ESRC First Grants study of PWD who are activists and campaigners for dementia (like Terry Pratchett but he didn’t take part!) – ‘No Limits: reimagining life with dementia’. 16 people took part, 11 men, 5 women.

Agnes and Nancy are real people, real names – offered pseudonym but all but 2 didn’t want that – being named and known is part of their activism. Film is available on vimeo or email Ruth and she can also send teaching resources / resource pack for facilitators to use.

Documentary film definition: about real life, but not itself real life. Term first used in 1926.

Health Equity Institute in San Francisco is leader in the field, have 35 documentary films ‘For Health and Social Justice’ made by and for students, incl ‘Old Age is not for Cissies’ about LGBT ageing.

Paper by Aagje Swinnen in The Gerontologist (2013) on dementia in documentary films – way it is always a representation of reality, not always helpful.

Common responses to film:

  • lovely film.
  • But also lots of challenges ‘do they really have dementia?’ – still living quite independently, travelling and so on.
  • It’s about friendship, not demetia
  • ‘She shdnt be allowed to chop wood (one memorable scene)
  • The PWD I support aren’t like Agnes and Nancy

Raises interesting questions about perceived authenticity – if someone doesn’t seem to be behaving like PWD, their illness identity gets challenged.

Bartlett, R (2012) ‘The emergent modes of dementia activism’ Ageing & Society

Interesting discussion among audience about both the importance of positive role models but also the pressure they create for other people who can’t be like that because of physical health, cognitive issues, social class, race etc. Ruth: someone with dementia saying ‘I thought I was doing well’ until they saw the Agnes and Nancy film [gulp!]

Ransackers Association – group for PWD – audience member.

 

Hannah Zeilig, UEA

Descartes: Using the arts to educate the dementia care workforce.

Still no clear regulatory framework for the dementia care workforce.

Staff in care home they worked in initially hostile to word ‘Arts’ and also to researchers, seeing them as ‘experts’ coming in to tell them how to do a job they’d been doing for 20 years.

People usually think of Arts hierarchically: Opera, poetry, classical music, sculpture at top. Pop music, tv, comics, cartoons, as lower, not really Arts even.

Tried to get staff to talk about their feelings about their work (in focus groups). 4 themes emerged:

  • Identity of staff as well as PWD
  • Awareness – how to behave sensitively, how to understand the condition
  • Language and communication. Care home staff refered to themselves as ‘bum-wipers’ and PWD as ‘nutters’ or ‘fruitcakes’. Powerful derogatory language. Invented game ‘word salad’ – magnetic words. As way of conveying that we all struggle with language sometimes
  • Practice of caring – lifting, toileting, moving, feeding.

So then researchers went away to find Arts resources addressing these themes. Everybody on staff wanted music.

[Frustratingly, at this point I had to leave, so I don’t know what happened next! I’m planning to contact the authors to find out though and I’m sure they’d welcome enquiries from anyone else who is interested]

BSG 2013, Oxford, Part 2

Partial and personal notes from some parts of this conference. Part one here

Plenary: John Beard, World Health Organisation

Global ageing and health: From talk to action

(cc) US Mission Geneva

Pace of ageing of population much quicker in e.g. Brazil, Thailand than West, so no time to get infrastructure in place.

Pop ageing was initially about more and more people surviving childhood and women childbirth. That ?led to reducing birth rate (+avail of contraception)

Dependency ratios are pretty valid in relation to proportion of children in pop (kids do need lots more care than contribute), but not so much for OP because OP aren’t necessarily, or simplistically, dependent. Changes in behaviour, attitude and policy can reduce dependency effect of ageing pops.

Fab graphs from Mathers et al 2013 on female deaths across the life course – low income countries v. middle v high income. Really clear and interesting graphics [use for K118?]

What is WHO doing about pop ageing? Now a formal priority at WHO, via:

  • Partnerships and political commitment
  • Build evidence base
  • Knowledge translation (evidence into policy and practice)
  1. Health promotion across life course – OP are not too old to change diet, behaviour etc.
  2. Early detection and screening, primary health care and long term care. EoL care.
  3. Age-friendly environments
  4. Rethinking ageing – toss out the stereotypes

Showed a video WHO produced for World Health Day 2012 about challenging stereotypes.  [Nice pictures. Might be a good resource for K118 LG13]

People get more diverse as they grow older, especially in terms of physical function (graphs to show across lifecourse. Physical function falls off with age, but range within age cohorts is much bigger). So generalising about later life even more unhelpful.

[Cd do one of those ‘see what the other students thought’ polls on ‘how old is an old person’ or similar, then follow on activity problematizing. Or one of these for awareness of own ageing (similar to K319 but not too similar?)]

Importance of getting beyond demography. Just because societies have pop ageing doesn’t tell us anything. Most healthcare costs are in the last 18 months of life, at whatever age those 18 months occur.

Need to move beyond gerontology and geriatrics as only disciplines that think about later life to include urban planners, architects, designers, technologists, people who make stuff.

Demographer in audience: working now on new ways of doing demography that are less ageist! Better measures.

[I am amused that this kind of thing always happens at academic conferences: speaker somewhat caricatures and demonises some group (in this instance Demographers) and in the questions slot, a member of the group resists and problematises this characterisation. I love academia!]

British Society of Gerontology, 42nd Annual conference, Oxford UK, Part 1

I only attended for one day this year, partly to launch these two books in the CABS/CPA methodology series. One is on Secondary Analysis and the other on working with existing older people’s groups. Both are available from the CPA for a bargainaceous £10 each.

What follows is my usual idiosyncratic note-form post from a conference. As usual, this is in no sense intended to be a complete representation of what any speaker actually said, just some things that I found interesting and managed to capture. Things I thought or things I need to follow up are in square brackets.

Symposium on Ageing and agency: Developing new theoretical perspectives for critical gerontology.

Based on book Ageing, Meaning and Social Structure [investigate for possible K118 Reader chapters]

(cc) crowt59

Amanda Grenier and Chris Phillipson
Agency in the ‘Fourth Age’ (or the problem of ‘Active Ageing’)

Gilleard & Higgs article 2010 Ageing without Agency, Jnl of Aging and Mental Health [find this]: The problem with the notion of the 4th Age is that it becomes a terminal destination, not a life stage or a cohort.

Attempts to give dignity at End of Life have failed because of perception of lack of agency in 4th Age. Assumption that agency is something you either have or don’t, but actually it’s much more complex and nuanced than that.

Grenier 2007 and 2012 discusses ways in which ‘4th Age’ has been used differently (e.g. age 80+ OR intersection of age and impairment OR objective measurement)

If 4th Age is about ‘decline and dependency’, how can you have active agency?
Impairments may make perception of having agency more difficult e.g. verbal / cognitive impairments.

Health and impairment are unhelpfully polarised anyway. 4th Age conceptualised as ageing without agency increases / sustains that.

If agency is increasingly important now that we are all supposed to have individualised post-modern lifecourses, that gets really important for ageing and the fourth age in particular.

Seeing people as having low agency increases their vulnerability to abuse and neglect.

So how can you increase /restore perceptions of agency in 4th Age?

  1. Develop new cultural narratives and frameworks for partic conditions e.g Alzheimers George and Whitehouse 2010 in Handbook – don’t let medical narratives dominate
  2. Agency may look different in later life (active ageing narratives don’t help)
  3. ‘Reduced’ or ‘diminished’ agency might be a better way of thinking about it than ‘present’ or ‘absent’. Also thinking about how it’s being constructed as reduced [that sounds really interesting to me].

Other possible things that might help:

  • Positively look for agency
  • think about inhibiting or encouraging conditions.
  • Allow for more passive and less active notions of agency (structural to personal)
  • Challenge underlying assumption of health.

Contingency rather than ‘lack of agency’ may be better description of late old age.
Settersten & Trauten chapter 2009 in Bengston Handbook of Aging

[There was an excellent moment in the middle of this paper when the presenter, Chris Phillipson, moved his hand into the light stream from the projector and the word ‘agency’ appeared appositely across his gesticulating hand].

 

Jan Baars, University of Humanistic Studies): Agency and Autonomy: Beyond
Independence
Links to old debates on autonomy. Interdependency is more characteristic across life course [could do Activity getting students to think about way they are interdependent with others – leading on to recognition of it being a continuum – wd also help to address worry about otherising OP]

Competency – how tested? What if someone refuses to take test? Are they then seen as incompetent? What about emotional, social, dialogic skills – they are seldom tested in the way that recall is.

Authenticity as a marker of competence – feeling someone is taking decisions that are ‘not like them’

Regarding yrself as having power and competency to make decisions [but this isn’t nec the case for younger people too. Can have life stages when have less at any point]. Ageist practices reduce this.

Suggested better definition of competency: Capacity to make adequate decisions as person sees it, which are responsive to situation and others. [But who gets to define ‘adequate’ and ‘responsive’]
Dignity as another key concept

Return to this in Discussion: is dignity separable from agency? Can you really have dignity if you have ceded control (or had it taken from you)?

 

Joseph Dohmen
Utrecht
Ethics, art of living, lifestyle (also chapter in the book)

Life politics (Beck, Giddens, Bauman) wanting to lead a life of your own
1. A promise,
2. daily struggle,
3. collective experience in Western world,
4. remnant of our communal feeling
(Beck and Beck-Gernsheim)

Martha Holstein 2010 – if autonomy is ultimate good, what does that do for OP?

Agency tends to talk about ‘life choices’ whereas structure more about ‘life chances’

Wants to moralise lifestyle. Make it about more than consumerism and health. Claims ‘lifestyle’ bridges gap b/w structure and agency [the philosopher’s stone! How many different theories are there that claim to bridge the structure / agency gap?!]

  1. Reflective distance – exploring one’s biog and social scope. Taking distance from directions about how you should grow older (e.g. Active Ageing)
  2. Expropriation – trying to relate yrself to yr own biog. Free yrself from own unhelpful influences. Future may restore the past
  3. Appropriation – autonomy as about positive freedom to make substantial choices in later life. Identifying with deepest desires.
  4. Authentic orientation – what makes life really valuable and meaningful. Strong evaluation of this.
  5. Engagement – how and why to (dis)engage. Relational autonomy
  6. Integration – coherence of life: maximal (classically), minimal (liberally or more p-mly), contextually, or not aiming for coherence but reliability in episodic life (Margaret Walker)
  7. The tragic condition – 1-6 are modes of active ageing but life is also passive ageing. The good life is the vulnerable life. Can’t escape in later life. We have to make tragic choices. There are always losses. Our passions can destroy our lives and the lives of others.

Everything in life is finite. This implies continuous dynamic b/w mourning and accepting losses and new beginnings.

Discussion: overlaps with Disability arguments e.g. ‘autonomy’ not as about independence. Also lit on Ethics of Care.

Relational autonomy changes as you age, esp into 4th Age – people don’t understand you, yr partner dies, you are mainly relating to much younger people. So you get less relational autonomy as you grow older. CP- paper by Elder on autonomy across life course. How does agency work in life course transitions? Do you reach a point when you can’t rework your agency?

 

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