Posted by: Lisa Hill | November 21, 2020

2020 Word for Word Non-Fiction Festival, 21/11/20

 

Geelong Library and Heritage Centre (Source: Wikipedia Commons)

As with so many other things this year, the annual Word for Word Non-Fiction Festival is a bit different.  It’s not being held at the Geelong Library and Heritage Centre: the program is live-streamed and so I was able to ‘attend’ a number of events.  This year’s theme is ‘Life-changing’.

First up was the Australian launch of The Mutant Project by Eben Kirksey.  This is the blurb for the event:

As scientists elsewhere start to catch up with China’s vast genetic research program, gene editing is fuelling an innovation economy that threatens to widen racial and economic inequality. In doing so, it’s also raising questions about science, health, social justice and what makes an ethical and fair society. Join American anthropologist and Deakin University Associate Professor Eben Kirksey live from the US for the exclusive Australian launch of his new book The Mutant Project, which goes inside the global race to genetically modify humans.

In conversation with Alicia Sometimes.


Alicia Sometimes is a writer, broadcaster, poet and science enthusiast, and she characterises this book as ‘exciting’.  Popular culture has explored gene editing in multiple ways such as film, so most people are aware of it.  She began by asking Kirksey how he became interested in it.  He ‘came of age’ as a student in the 90s amid the nature v nurture debate, and he just happened to be in Hong Kong speaking about the ethics of gene editing when the story broke about what the Chinese were doing with it…

From his hotel room, Kirksey searched for information about this story and found Dr Ha featuring in You Tube videos which claimed that two healthy baby girls were born, no different to us except for one gene which had been edited to make them resistant to HIV. But as the story unfolded it was found that in fact these children were not healthy and the claims made by Ha on the videos were misleading.  As the story progressed, Ha was demonised as Dr Frankenstein, so Kirksey wanted to tell his complicated story and the story of the twins.

Asked how parents dealt with all this, Kirksey talked about the stigma of HIV in China and how it leads to job losses and no prospects of marriage.  The HIV positive parents who signed up for the program wanted children but wanted to avoid them having HIV so that they didn’t suffer discrimination as they had.  But in China, they could not access alternatives as Australians or Americans could. They were informed people, not dupes, but their story is about being ‘on the edge’ of secrets about the research.  The book also explores the ethics of de-regulation… which in this experiment involved the design of the experiment to ensure the safety of the children; the lack of testing (conducted ethically so as not to infect them) to see if they really were immune to HIV; and a scientist more interested in publicity than the health of the children.  The Mutant Project is really a book about the ethics of it all.

The conversation moved on to the topic of inequality and how race and class impacts on who can access gene therapy.  (There are instances of gene editing being beneficial.)  He didn’t address the US health care system and the failure to provide universal health care, but he talked about the costs of gene editing being so astronomical that it doesn’t just affect the capacity of individuals to access it but also costs to governments (like ours, funding Medicare).

There’s also the issue of genetics being used in eugenics: gene editing can be used to erase difference — which implies that disability should be eradicated and humanity should be homogenised, so that everyone is ‘normal.’

One snippet worth mentioning is the problem of privacy when it comes to genetic data.  Many people do one of those ancestry gene tests has that data stored somewhere in other countries that don’t have privacy protections, and if these are matched up with other data, that brings up the risk, for instance, that you might not get health or life insurance because some other member of your ‘genetic family’ has some gene that leads to illness or disability.

Alas, either my internet or theirs was misbehaving so I missed segments, which made it hard to follow the conversation well enough to share it here.


My next session was Becoming Older, and this was the blurb:

As we are living longer, what is it that we expect from our later years? How can we help our elderly loved ones reach safe harbour at the end of their lives, happy and living the best life possible? Join Jean Kittson (We Need to Talk About Mum and Dad) and Robert Dessaix (The Time of Our Lives) for an in-depth discussion of the practical and the philosophical implications of ageing, for both ourselves and our loved ones.

Panel discussion with Hannie Rayson.

Sue at Whispering Gums has already written up a conversation about The Time of Our Lives so here I’m I focussing mainly on Jean Kittson’s book.  Although our time for caring for elderly parents is now over, I know that many people of my generation are struggling with this stage of life, so I was hoping to pick up some wisdom to share!

Kittson talked about the different designations of ‘old’.  In some countries being in your forties is old, because poverty and disadvantage means that that age group is nearing the end of life, which for us in privileged countries is somewhere the other side of 60 or more.   She says we live in an ageist society, and she picks people up on it when they make assumptions based on her age.  But the situation is of course very different for her parents who are in their nineties now.

Hannie Rayson said that she valued the practical advice in Kittson’s book, but that she hadn’t realised that what she also needed was a non-judgemental friend to be on the same journey — this book is that friend. (This made me wish I’d had it when I needed it!!)

Kittson asserts that old people are not a burden, and that their wishes should be at the centre of decision-making and that the way they are so often treated with impatience and disdain means they need an advocate.  She understands, for example, that older people do get ‘left behind’ with IT and increasing requirements that we use it can be really difficult.  (I could relate to this: Q-scanners to check in for potential contact-tracing at restaurants are not much use if you’re not in the habit of taking the phone with you (or if you don’t have a smartphone, which many older people don’t.)

The whole concept of being a burden, to everyone including the government, Kittson says, is offensive.  Honouring your mother and father is a ‘commandment’, and separating them from community and putting them all together in aged care is not something any of us would like.  (There was a brief discussion about how baby boomers are not going to tolerate it, but the ideas seemed like fantasy to me).

They moved on to discussing family dynamics.  There are ‘six hilarious categories’ of people looking after their parents.  The CFO is the Chief Family Officer, normally a daughter, who does all the hard work and makes sure everything gets done.  The FIFO lives interstate, or far away from making any helpful contributions.  This person visits irregularly, bangs the drums, upsets everything and everyone with criticism and then departs again.  There is always a Bad Sibling.  Kittson gave the example of one who was the executor of the mother’s Will, ringing the solicitor for a copy of the Will within a scanty five minutes of the death.  And there’s a WTF, the Walkie-Talkie family member, who ‘talks the walk’ with emotion and drama but doesn’t always make the right decisions.  Family dynamics is one of the hardest things.   Amen to that.

There was also discussion about the need to have a handle on all the paperwork and the need to be prepared with Power of Attorney and Advanced Care Directives sorted out well before they are needed.  Kittson recommends getting help from experts when it comes to the finances because it is so complex and potentially disastrous.  I second that advice: the consultant I used saved us $30,000 on the cost of flying my father down to Melbourne by air ambulance: that’s the difference between using a private charter company and the Royal Flying Doctor Service, but it had never occurred to me to get a quotation from the RDFS because I didn’t know that they did that kind of work.  (And they were brilliant.  My father always hated flying, but he had a great time and really enjoyed the journey!)

Most people say that the hardest thing to deal with is the resistance of parents when they’re trying to do the right thing… and this is where my internet cut out again! It was so frustrating… but then the stream came back just in time for Kittson to explain that her father had an imaginary friend called Bert who would ring up and cancel doctor’s appointments!

We Need to Talk about Mum and Dad sounds like essential reading for almost everyone.


My last session for the day was focussed on foreign affairs.  This is the blurb:

Australia has long been tied to the United States by shared values. Recent times have seen an undeniable shift in the relationship, both politically and culturally. As the US faces challenges to its dominance as a world superpower, it needs this alliance more than ever. Join us for this panel discussion with  editor Jonathan Pearlman, demographer Liz Allen (The Future of Us), academic and activist Dennis Altman (Unrequited Love) and moderated by ‘An American In Oz’ Sara James, as we ask – fresh off the US election – how will the result impact us?

There was, of course, discussion about the election debacle in the US. I am a bit over this, and there was some self-indulgent talk about the personal life of one of the speakers, which had nothing to do with the topic of the American alliance or our cultural relationship with them, so I waited impatiently for the session to get back on track.

And it did.  Dennis Altman talked about being in the US during the election of 2016 when even on the night results were announced the sense of foreboding was palpable.  The title of his book links his experience with Australia’s as a nation: we want to believe that our security depends on the US and it’s inevitable that we’ll be disappointed because we are not important to them.  Even Obama’s new 600-page account of his first term of office doesn’t mention any of our political leaders and is an indication that we are not very relevant to their concerns.  (Later, a suggestion that there were things the US could learn from us was dismissed as nonsense.  They have a dysfunctional, expensive health care system but they are not interested and never have been in learning from Australia’s universal health care system).  He says we need to look at the US not from the vantage point of ‘little brother’ but rather to view them as another foreign country, and we need to balance that with greater interest in the region we live in.  It was inevitable that there would be a big focus on the 2020 US election, but we should have had more focus on the election in Indonesia.  (Our trade with Indonesia is almost non-existent and theirs is a market with a middle-class that is now greater than the entire population of Australia.  It’s in our interests to do better.)

Pearlman (who edits the Australian Foreign Affairs journal which I write about here from time to time), talked about how when Our Esteemed Leader announced the enquiry into the origins of C-19, (which now appears to have been not in China but in Italy and perhaps in wider Europe) he was in contact with the US but not with any of our region’s leaders.  Yet Pearlman notes that the US is withdrawing from our area, and there is no guarantee that despite the rhetoric they won’t disengage further.  So we need to find new partners and new friends in Asia — and because none of them are as powerful as the US, it will need to be a coalition of partners such as India, Japan and so on.  Can they replace the alliance with the US?  That’s discussed in the most recent edition of the AFF journal which I haven’t read yet.  There are huge risks if we don’t reorient our foreign relations because China is changing the power balance and causing all sorts of tensions in our region.

A question came from the audience: we take a lot of our cultural ideas — especially pop culture — from the US so if we shift our focus to our region, will that change our cultural ideas?  Altman thought it would be a good thing if it did because culture should change and adapt. (He didn’t mention the language barriers, though later the problem of Australian disinterest in Asian languages was raised.)  Instead Altman transitioned from this question to discuss the government’s focus on military issues at the expense of foreign aid in our region, when our neighbours are more concerned about our position on climate change than these security matters which get so much attention.

Will much change with Biden?  Altman is pessimistic because the president doesn’t have a majority in the senate and will be frustrated in a lot of his policies.

The internet cut out again just as the discussion started about the pernicious disinformation in this US election cycle, and how bold it was.  It was time to give up.


I have two more sessions tomorrow, and hopefully I’ll have better luck then!


Responses

  1. Frustrating about the Internet Lisa. I would love to have attended this but it wasn’t to be.

    Thanks for the link. I enjoyed both reports, but I’ll just comment on a couple from the aging one.

    You wrote that “She understands, for example, that older people do get ‘left behind’ with IT and increasing requirements that we use it can be really difficult.” Yes, like you I agree. I am disgusted at how much is EXPECTED to be done online, at how often we are sent to websites when we call organisations. That’s alright for me, I’m IT oriented, and I prefer going online in most cases to battling the terrible phone systems, but it’s completely unreasonable because, as you say, many older people don’t have computers or appropriate devices. Often they are told to go to the website to download the form they can then fill in and post. It’s completely unreasonable. Give it a couple of decades and most older people will be au fait with technology but not now.

    And, you also wrote “(There was a brief discussion about how baby boomers are not going to tolerate it, but the ideas seemed like fantasy to me).” Absolutely! I think anyone who says this has not needed to care for older people who are frail and in need of 24/7 care. People who say this are living in la-la land as far as I am concerned, potentially putting their children or other family members in invidious postions. Mr Gums and I have have made a pact that they other is to place us in aged care if that time comes and we are unable to make the decision ourselves. Who knows what will happen, but we have made our feelings clear when we are compos so the other one doesn’t need to feel guilty later!

    Like

    • Absolutely… and my experience with My Aged Care for my father is that it might work for people who ‘tick the boxes’ but if you don’t, it makes the system impenetrable. And I suspect that when our time comes it may not work for us even though we are ‘au fait’ now, because we won’t be able to keep up with the changes as they keep coming, relentlessly.
      As for how things might be for us, I think it will be worse. More of us have fewer children, and more of us have children working interstate or overseas. From my experience what makes aged care bearable is contact with loved ones, and we are likely to have less of that than our parents have had. Plus, ‘advances’ in medical care mean that we will be kept dragging on for years longer: the doctors won’t let us die.

      Liked by 1 person

  2. A non-fiction festival is a nice idea. And good that we can see these things remotely at the moment. As for the Aged Care and expectations, I am *so* with you. Things like online banking are not remotely easy for older persons. My bank is ok but I attempted to set up Mr. Kaggsy online (he’s a little older than me and so leaves things like that for me to sort out) – and gave up in a few minutes as the expectations were incomprehensible and unrealistic (a scan of photo ID? making a video of him to submit?) Just ridiculous….

    Like

    • Yes, I love this festival.. Ever since it started I’ve abandoned The Spouse for the weekend and stayed in a nice hotel and had a lovely time. (I should say, Geelong is only an hour or so away by car, but I can go to more events if I stay overnight.)
      Are you serious about a video to get a bank account? I have been with the same non-profit bank (which used to be the teachers credit union) for decades so I’ve got no idea what the requirements are here…
      But I came a cropper when I had to prove my father’s identity in order to move him from aged care interstate. The system here is that, to get a place, even if you are fully self-funded, you have to register with Centrelink which is our welfare bureaucracy. My father didn’t have any of the ID documents that they required to establish identity. He had nothing with photo ID because he didn’t drive (no licence) and he hadn’t travelled for so long, his passport had expired. The people in the system knew who he was, because they’d approved him interstate before these rules came in. But the computer said No. It was a nightmare.

      Liked by 1 person

      • He has an account but it was to try and set up the bank app on my tablet. Their online version of banking is pretty user unfriendly anyway and they seem to be trying to force everyone onto the app. However, to ID him they apparently wanted a sight of his photo ID and then us to make a short video of him. Quite bizarre. My own bank was much less complicated…

        Like

        • Good heavens! I hope that never becomes necessary here!

          Liked by 1 person


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