Remembering My Hat

11th October 2011

End of life care for LGBT people

I’ve been at a seminar on End of Life Care for LGBT people today, mostly focusing on older people, although with briefer mention of younger people who are also coming to the end of their lives.

I’m no specialist in end of life issues, although I know a bit because of knowing about later life, which is when end of life issues come up for most people. I went along partly out of guilt because one of the organisers had asked me for help with recruiting older bi people to attend and I had tried but (as far as I know) failed.

(cc 19melissa68)

We started by going round the table, saying what our particular interests were in later life and why we were there. At the beginning of that process someone said ‘same sex partners’ as if that was a common experience to all of us and I prepared to start banging the bi and trans drum of ‘same sex partners does not cover us all, all of the time’. But then someone said how important it was to include trans issues in our discussions and gave some examples of how and why. And then someone else said that they particularly wanted to include bi issues because they are bi. And then someone else mentioned bi stuff again, and someone else trans and, really, by the time it came round to me, I felt almost redundant. Which was very nice indeed, and very encouraging. We also had some good discussion of particular issues for LGBT people of colour and people who have been living with HIV for decades.

Someone other than me was talking about the importance of separating out data from bi people from data from lesbians and gay men, which was very encouraging in terms of the likely reception of BiUK (and friends)’s forthcoming The Bisexuality Report (watch this space) which is going to argue just that.

I was delighted to hear that Age of Diversity, which is the successor organisation to Polari, are going to launch their website next month (it’s still in construction at the moment, but you can find it by googling).

There was quite a lot of discussion of the issue of people using a different name than their official name and the difficulties and distress this creates when someone is not fully compos mentis, or when their friends ring the hospital to ask after them but don’t know their legal name. I don’t know whether using a name other than your legal one is particularly common in the LGB community (I know it is in the trans community). I can imagine that it might be, but to me it feels an entirely standard issue in later life because, I now realise, 3 out of my 4 grandparents/pseudo-grandparents went by a middle name, so it’s an old chestnut to me (but none the less important).

People also talked about the importance of debunking the notion and scrapping the phrase ‘next-of-kin’. It has no legal meaning when someone is alive, only once they are dead, and it’s one of the main routes by which LGBT people do not get to have their nearest and dearest involved in their care. Lots of (sadly familiar to me) stories of estranged family turning up and making decisions for someone they had not seen for twenty years, while their partner or close friend is shut out.

I loved a passing comment made by a hospice chaplain when introducing himself and his organisation ‘we’re lovely. In fact, like most hospice people, you could say we’re terminally nice’.

One of the outcomes of the meeting was that the organisers are going to collect together useful resources on this topic. I’ll post the link for that once I know it. But for now, a few resources that I managed to jot down:

  • REGARD (organisation for LGBT disabled people) and their campaign for ‘Sue’s Law’ (if you just search for ‘Regard and Sue’s Law you should find it)
  • Kathy Allmack published a lit review on End of Life Care for LGBT people about three years ago
  • NHS (don’t know which bit) has apparently just produced a guide on bereavement for (re?) trans people.
  • Report on palliative care for LGBT people: National Council for Palliative Care (2011) Open to all?, NCPC and Consortium of LGBT voluntary and community organisations, London ISBN 978-1-898915-89-8
  • Opening Doors Camden (part of Age UK) is launching a checklist for care homes and care providers on practical ways to be LGBT friendly. Out next week, should be available as a pdf on their website.

12th April 2011

Fiction and the cultural mediation of ageing: Final part (I promise)

Later, I gave a paper in a panel on narrativity and non-normativity and only seem to have made notes on one of the other papers:

The successful failure of narrative in Lisa Genova’s Still Alice

Sarah Falcus

Novel about psycho-linguistics prof who gets early onset dementia [want to read this one too]

(cc) quimby

‘Everything she was was about words’, one of first words she can’t remember is ‘lexicon’. Metafictional concerns in the novel. 3rd person narra but privileges PWD’s point of view. This conflicts somewhat with coherence and chronology demanded by novel form. (not experimental text, fairly trad)

Reader too experience something of Alice’s experience but not to get lost in it, as Alice is lost. Her missing words are also absent from the text, at the beginningn of novel. People’s names too ‘that man’ as she can’t remember her hus. Repeated sentences and paras. Don’t know some things because she doesn’t.

Alice is only 49 at onset – resists association of dementia with ageing. Activities of Daily Living questionnaire – is incontinence because of dementia or because of ageing? But pre diagnosis, attributes her anxiety, confusion, memory loss to menopause = natural v. monster of dementia

Nearly all fiction about ageing contains a ‘mirror-moment’ (Kathleen Woodward)

[Notes definitely getting more sparce as I got more tired]

Naomi Richards from the Look at Me project

Putting older women in the picture

Phototherapy. Working with Rosie Martin, who worked with Jo Spence in 1980s to create phototherapy! As before, using photography to heal, beyond the family album, dressing up.

Aged 47-60 women. 5 full days over 4 week period. Photo diaries to familiarize with camera, over one week. And to help them think visually. Not as a prompt to talk, they were as interested in the product as the process, unlike traditional creative methodolgies in social science which tend to focus on the process [and particularly the talk about the process] [very interesting. Think some more about the implications of this]. Re-enactment session on theme ‘transformation’ transformative visual narrative using props.

One participant’s theme was Gaga to Lady Gaga.

Photos within her grasp rather than the spectre over her shoulder [kind of literal/metaphorical thinking I’m not good at but really like. Seeing something that is literally true as well as metaphorically].

Marta Miquel-Baldellou, Univ of Lleida

From pathology to invisibility: the discourse of ageing in vampire ficture

Vampires don’t show their age and don’t age. Vampires first in fiction looked old. No longer. Repulsive, now generally attractive. Bram Stoker, foreign, aristocratic and old. Anne Rice Interview with the Vampire started trend of young vampires, and introduced vampire children. Also first to be sympathetic

Aged vampires in Vict fiction as sign of difference.As became younger, became more sympathetic, true hero of the novel. Appears in mirrors in modern novels [not in the novels I’ve read]

Fiction and the cultural mediation of ageing: Part 2

Barbara Czarniawska, Univ of Gothenburg

Narrative medicine: or why doctors do not like to listen to the stories of older patients.

Narr medicine, not just about patient narratives of illness/experience, also about patients writing as part of their therapy, medics stories about patients and about themselves.

Arthur Frank ‘illness is an occasion for autobiog’ – more time, more need. [Is illness particularly an occasion for autobiography? Depends on the sort of illness. Flu is not an occasion for autobiography. Was Frank referring to chronic illness? I ought to read Frank again]

Robertson Davies 1994, The Cunning Man, another recommended book.

RD Summarizing the WHO definition of ‘health’ as ‘health is when nothing hurts very much’ [This is not the WHO definition but I quite like it as an aphorism – it’s quite realistic, workable and everyday, rather than the unachievableness of the WHO definition. And it makes it clear that disability is not ill-health. Although what about disabilities which involve chronic pain? Would someone describe themselves as healthy but in pain? Seems possible that they might. And it also falls down a bit because you may not be in pain with a blood clot that will kill you, but you’re not healthy (are you?)]

Audience comment after: this definition is also good in relation to ageing – more realistic that positive ageing agenda – ‘if your body is as much like a young person’s as possible’ [that’s my phrase/critique]

(cc) nursing pins

Was the cunning man:

–       a doctor from the past, before evidence-based medicine and standardization?

–       or from the future with the growth of holistic and alternative medicine?

–       just a patient’s dream, never existed?

Annemarie Mol (2008) The logic of care. Philosopher contrasting logic of choice (customer/citizen) v logic of care (patient, albeit active).

Audience comment: both are available to medics in care settings, they chose which one they draw on according to discursive purposes [does it make a diff if you call it a logic, rather than a discourse? I think it does. Discourse emphasizes variability, logic suggests discrete system. Interpretative repertoire, of course, is supposed to indicate even higher degree of variability]

Not everybody wants to tell stories about their experience. Shouldn’t become a new imperative (no danger of that in medicine. Might be in management)

Nurses’ handover abolished in some hosps – loss of a storytelling opportunity for nurses.

Then I chaired a panel on Fictional stategies and metaphors

Joan Walker, Loughborough

Love and relationships over 65, do comtemporary  british novels reflect the new reality?

Non-fiction since 1972 de Beauvoir Coming of Age, has known that older women have sex and relationships. Gerontology textbooks routinely acknowledge this now. But contemporary novels don’t seem to know this.

Alison Lurie ‘Foreign Affairs’ 1984 novel

Covers of novels about 65+ women’s relationships don’t show the women, have abstract design, objects, cartoons, younger woman shown.

Elena Bendien, Utrecht

A metaphor for ageing: shrinking

Dutch writer, not trans eng Inez van Dullemen ‘past is dead’ Vroeger is dood’, older woman (born 1920s?) still writing.

Metaphor of ‘shrinking’ is a key one in writing about ageing, also in policy – shrinking resources/social contact/shrinking workforce.

Is a spatial metaphor – reduction, contraction, drying out, loss of moisture and volume. Etmology [in Dutch? Or also in English?] shrinking like a snail going back into its shell – snail isn’t reduced by shrinking, just going home!

(cc) daveograve

OP’s bodies often described as shriveled, shrunken. Contracting is not about loss, it’s about making more dense. Signif for thinking about ageing.

Zoe Brennan, UWE

Fictional strategies for representing the older woman as fully human: reclaiming the everyday.

(in novels)

Make the older woman the central character


1)    inspirational, extraordinary female characters. Smash preconceptions about what older women are like e.g. Happy Ever After Jennie Diskie, has rela with much younger man, but then leaves him to go off and travel round the world. Rhode Island Blues, Fay Weldon, much quoted this conf. Challenge the idea that character is set by the time you are old. Show people developing and changing. Complex

2)    Re-evalutes the day-to-day: May Sarton Spinster, Barbara Pym – not remarkable charcters. Don’t do remarkable things, live everyday lives as you might expect for older people – visit family, cook, have hobbies. Activities not dismissed as time-filling – absorbing. (hobby as dismissive term)

3)    Angry texts, texts that rage. Bodies that don’t work. Texts about embodiment. May Sarton As we are now Frustration, society makes it worse. Ist person narrator is a powerful way of doing this, as Carrie in As we are now – can see her decline through her own journal writing. [read this! Has been on my (metaphorical) ‘novels to read’ longlist for years – move it to shortlist!]

28th September 2009

For the love of three Bookstart books

My almost-toddler had a routine Health Visitor checkup today. I was trying to work out why I took him along. I have no worries about him and felt no need to have my lack of worry validated by a Heath Professional. Taking him along risked getting sucked into surveillance practices that I know from previous experience can be very unhelpful. It was quite inconvenient to attend – I had to take time off work and he missed a nap.

I have, like most parents, considerable investment in being seen to be A Good Parent, and attending routine check-ups is one of the ways modern parents can do this. But I have sufficient theoretical traction on that to give me the resources to refuse it head-on. And sufficient articulateness and socio-cultural privilege to deal with the Health Visitor had they bothered me about it. I know my Health Visitor has targets to meet about getting parents to bring children to check-ups, but I don’t care enough about her to attend just to help her statistics.

In the end, I concluded that I went because I wanted the Bookstart books you get given at this check-up, and the handy sturdy canvas bag they come in.

That set me thinking about the role of trivial incentives in health and social care settings and in recruiting research participants.

Children often get given stickers by dentists and practice nurses these days. It doesn’t seem to encourage or reward my children significantly, but I guess it must do some children, or it wouldn’t have become such a common practice. Or is it, perhaps, not an evidence-based intervention?! Is is perhaps performed just to make practitioners feel they are doing being good with children?

Pregnant women in my area get given a pseudo-book ‘Emma’s Diary’ at an early antenatal appointment. I found it too irritating and patronising to read. I wonder whether it does improve pregnancy outcomes. Then there is the whole Bounty Bag Full of Nothing phenomenon. If you have a home birth you often end up not getting the post-birth bag – serves you right for bucking the system?

It is becoming increasingly common practice when doing academic research to reward participants with something like a £10 M&S voucher. I’ve always had rather mixed feelings about this. On the one hand, yes, it’s nice to symbolically give something in return for participants’ time, energies, insights and experiences. But on the other hand, £10 seems a woefully inadequate response given how crucial people’s participation is to academic research. And as vouchers-for-participants becomes more of a norm, it becomes more difficult to undertake unfunded research. And there’s an argument from the service-user movement that participants in research ought to be properly paid for their time if their contribution is so important.

I’ve often wondered whether the £10 is significant to research participants, or just to researchers, so that they can do being a good (ethical) researcher. But perhaps my own willingness to inconvenience myself suggests that trivial incentives can work.

2nd September 2009

The changing nature of health advice-seeking behaviours

Filed under: Uncategorized — rememberingmyhat @ 12:42
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My pre-schooler is very partial to the counting rhyme Five Little Monkeys. For those not privileged enough to have encountered this little gem, it goes:

Five little monkeys bouncing on the bed
One fell off and bumped his head
Mummy called the doctor and the doctor said:
‘No more monkey business, bouncing on the bed!’

And so on, counting downwards until there are no little monkeys left.

Thankfully, no head-injuries have been sustained yet, but it always makes me think about the changed ways in which we interact with the NHS and health advice nowadays.  I don’t know when this ditty dates from, so I don’t know whether ‘called’ means ‘telephoned’ or ‘called in for a house-visit’ but neither is terribly likely to happen in my experience (although Swine Flu does seem to be mean that GPs are spending more time telephoning  patients rather than seeing them in person).

Here, instead, is my version of the health-advice seeking behaviours of the modern parent:

Five little monkeys bouncing on the bed
One fell off and bumped his head
Mummy called the doctors’ and the receptionist said:
Well, if it’s really urgent, you can see this trainee doctor with bad breath that nobody ever wants to see tomorrow, or you can wait a fortnight to see your own doctor.

Four little monkeys bouncing on the bed
One fell off and bumped his head
Mummy called the doctors’ and the practice nurse said:
Has he got asthma or diabetes and did you know you’re overdue a cervical smear?

Three little monkeys bouncing on the bed
One fell off and bumped his head
Mummy called the Health Visitor and the Health Visitor said:
You’re rewarding him for bad beahaviour, you have to do controlled crying.

Two little monkeys bouncing on the bed
One fell off and bumped his head
Mummy called NHSDirect and the nurse there said:
Better take him to A&E just to be on the safe side.

One little monkey bouncing on the bed
He fell off and bumped his head
Mummy looked it up on the internet and the internet said:
If he seems fine and his pupils are the same size as each other, he’s probably fine.

ETA:  With thanks to Sara and Ina May’s Pinard, and in the light of my next post about social workers taking your children away (and with apologies to my social worker friends and colleagues):

No little monkeys bouncing on the bed
They’d all fallen off and bumped their heads.
Mummy called the doctor and the doctor said:
A clear case of neglectful parenting, we need an interagency referral to social services who will take them into care immediately, you’re an unfit mother.

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