Care: A Reading List

There’s a piece of street art in my home town that says “The more I think about it, the bigger it gets”. I was reminded of it during a recent visit to Keele University when a conversation with colleagues turned to recreational reading. I always have a book on the go and I’ve written before about the importance of good reading for good academic writing, but the conversation at Keele made me realise how much my recreational reading overlaps with my professional interests, particularly my interest in care. And it’s not deliberate, it’s just that once you start thinking about care, you see it everywhere. The more you think about it, the bigger it gets.

Not everything I’ve read, however, has been good. I’ve read many books that, while undoubtedly cathartic for the author to write, should never have been published for general consumption. So I wanted to celebrate the good books. The books that are both beautifully written and true to the experiences of carers (both family & professional). The books that expand your mind and tear at your heart. The books that I regularly recommend to friends, strangers, students, and colleagues.

I hope to continue to add to this list over time, as I read new books and remember old ones, but I’d also welcome your suggestions. What’s the best thing you’ve read that explores the concept of care?

Five Days at Memorial by Sheri Fink

Home is Burning by Dan Marshall

Shtum by Jem Lester

The Girls from Corona del Mar by Rufi Thorpe

Cutting for Stone by Abraham Verghese

Bettyville by George Hodgman

The Spare Room by Helen Garner

The Unspeakable by Meghan Daum


Still Alice

I knocked off early yesterday to see an advance screening of Still Alice, the film adaptation of Lisa Genova’s novel about a professor diagnosed with younger onset dementia. As a dementia researcher, avid filmgoer, and fan of the book, I walked in with high expectations… but if Still Alice had been a film about anything other than dementia, I would have walked straight back out.

Yes, Julianne Moore is fantastic and it’s great to see younger onset dementia on the big screen. But as a piece of cinema, it’s appalling. The pacing is uneven, the other actors are painfully earnest (Alec Baldwin as a professor? Please!), and the dialogue is straight out of a soap opera. As a vehicle for improving public understanding of dementia, it also lacks depth. The portrait of a white, wealthy, heterosexual woman with a supportive family, a private neurologist, and in-home help misrepresents the reality of life for most people with dementia and their families. To be fair, this portrayal is true to Genova’s book, but I think it’s also indicative of a bigger problem in mainstream cinema.

The mainstream film industry loves an actor who can portray a cognitively or intellectually impaired person with just enough pathos to make us cry into our popcorn but not so much method that we’d be uncomfortable. Think Sean Penn in I Am Sam, Tom Hanks in Forrest Gump, Leonardo DiCaprio in What’s Eating Gilbert Grape, Julie Christie in Away From Her, and Robert Downey Jr’s great line about “not going the full retard” in Tropic Thunder. The mainstream film industry prefers actors and screenplays that make us believe that if we met this character in the real world we wouldn’t treat them with the same ignorance, arrogance, and discrimination they’ve encountered on screen.  And it simply doesn’t option books or greenlight screenplays that are too realistic*, preferring to leave the tough stuff to foreign films, independents, and documentaries which, no matter how good they are, simply lack the reach to change public perceptions.

Still Alice is no exception. Yes, we see Julianne Moore wet herself when she can’t remember where the bathroom is and, yes, we see her raging against the diagnosis. But it’s all comfortably cocooned in cashmere sweaters, summer houses, and a functional family dynamic… and it’s not even half of what people with dementia and their families deal with on a daily basis.  This is not the woman who puts her husband with dementia on the bus while she walks home because they can’t afford two fares. This is not the gay man with dementia who’s forced back into the closet because the nursing home staff don’t want other residents to feel “uncomfortable”.  This is not the Murri man found naked in the neighbourhood playground at 2am and taken to the Watch House instead of a hospital. This is not the migrant who’s lost her English but can’t access a care worker who speaks her native language. This is not the woman who is constantly told “you don’t look like you have dementia”. But it’s only when we see these stories on the big screen that public understanding and attitudes might begin to change.

A film shouldn’t be lauded just because it’s about dementia. Actors shouldn’t receive awards for being the best part of a bad film. If the mainstream film industry is going to ‘do’ dementia, let’s demand they do it well. Let’s insist on great films about real people that are compelling, well scripted, well acted, and beautifully made. Surely people with dementia and their families deserve that much.

*Barney’s Version, starring the great Paul Giamatti, is a notable exception when it comes to recent mainstream films about dementia, but despite being a compelling and beautifully uncomfortable film, it still has a white, wealthy, heterosexual protagonist.

Artisanal Academia

In a recent post about the nature of academic work, Zen Faulkes described his research as “hand-crafted”. It was a term I’d never seen associated with academia before, but one that made instant sense.

As I thought about it, my brain started doing word association, generating a list of words that describe hand-crafted things. I scribbled them down as they came to me: organic; one-off; skilled; time-consuming; precious; valuable; lost art; expensive; beautiful. And as I wrote, I realised that good research is all these things. It is an organic process in which progress is sometimes fast, often slow, and the best ideas come from having time and space to think, explore, experiment, and discuss. Every piece is unique and makes a valuable contribution to humanity. It is time-consuming and the people who do it are highly skilled. It is expensive, but the outcomes are precious and beautiful. And I fear it is becoming a lost art.

In the current academic model (where universities are businesses first, and places of learning & understanding second), research and the people who do it have become commodities. The word association list would include terms like metrics, output, impact factor, H-index, benchmark. The focus is on quantity, not quality. Researchers are judged on how many papers they publish and how much money they bring in, not whether they’ve made a meaningful contribution to the world. They are seen (as Sharon McDonough has so beautifully described) as pieces of machinery; viewed as a disposable means of production rather than people.  In this model there is no time for ideas to develop, no interest in the process. This model does not produce research that is unique and valuable; it produces masses of papers that no-one has time to read or contemplate, let alone translate into action. In short, this model forces talented, skilled, and passionate people to sacrifice their craft in the name of productivity.

My home is full of things that are hand-crafted. A loaf of bread from my favourite artisanal bakery, a hand-woven blanket I bought while in the US, a hand-coloured lino print by Evelyn McGreen. I understand that the price ($8.50 for the bread; $300 for the blanket; don’t ask about the print) is a reflection of the time and skill involved in making them. I recognise that although it would reduce the cost, rushing the creative process and cutting corners with ingredients and materials would make for an inferior product. I also value the people who crafted these things and the journey each product has taken on its way from their home to mine – I can see the baker kneading bread out the back when I stand at the bakery counter; the blanket came with a hand-written thank-you note from the weaver and a picture of her sheep; and I have fond memories of the time I spent in McGreen’s home town.

My research is also hand-crafted. The studies of suicide risk in family carers of people with dementia, for example, were a world-first. No research had ever been conducted on this topic before and our work opened up an entirely new field of study and highlighted a host of additional issues that needed to be explored. It also required a unique combination of high-level scientific and interpersonal skills, and had significant and immediate implications for practice and policy. Despite this, I have spent the last 5 years on a series of short-term contracts and each time a contract ends I am made to wait until the 11th hour while the university decides whether I am worthy of their money. (While I wait I look around my home and wonder which hand-crafted beauty I’ll have to sell to make rent if they decide I’m not.) The pressure to produce is also constant. Most recently, for example, the university offered me an ‘interim contract’ of just 2 months’ duration which came with the condition that I had to have three papers submitted for publication in that time. (The fact that I had published double the expected number of papers during the previous contract was, apparently, immaterial.)

So when I walked into the artisanal bakery just before Christmas and saw the Help Wanted sign, I was definitely tempted. But I’m passionate about research and determined to be a force for good in academia, so I resisted the urge to fill in an application form. On Twitter, the #circleofniceness hashtag is used by academics seeking to bring a bit of humanity back to universities. But perhaps we need another hashtag – #artisanalacademia – for those times when we want to remind the world that research, just like good bread, woven blankets, and great art, is hand-crafted. And as with all hand-crafted things, the people who craft it must be valued, respected for the contribution they make, paid what they are worth, and never forced to rush the creative process or sacrifice quality for quantity.

Lifting & Leaning

This piece, written by me, was originally published in the Australian Ageing Agenda, under the title ‘Promoting Good Mental Health for Carers’. It appeared as part of AAA’s focus on Mental Health Week and is reproduced with permission.

I read an article earlier this year in which Joe Hockey was described as having the toughest job in the country. After spraying a mouthful of coffee over my newspaper, I wondered what the country’s carers would think of that. Caring is a tough gig, but few and far between are the carers who fly business class, smoke cigars, or can expect to retire with a pension in excess of $100,000 per year.

Instead, carers spend their days lifting, showering, dressing, toileting, feeding, medicating and managing; often at the expense of their own physical and mental health. Carers experience higher than average rates of depression, anxiety and hopelessness, and my own research has found that family carers of people with dementia contemplate suicide at eight times the rate of the general population. In Mental Health Week, it is important we take time to acknowledge family carers – the people who really have the toughest job in the country – and explore how we might better support them in their role.

While systemic change takes time, there are four things we can do right now, this week, to promote good mental health for carers:

  1. Value their contribution: Feeling valued is an important part of good mental health and we can all do something to show carers we value the contribution they make to our community. If you are a neighbor, drop off a home-cooked meal. If you are a service provider, make time for a cup of tea and a chat. If you are a politician, arrange a consultation with the carers in your electorate.
  2. Encourage self-care: Self-care is the key to good mental health, but few carers can find the time. If you know a carer, offer to relieve them for a few hours this week so they can see a movie, get a massage, or go for a swim.
  3. Recognise carers as experts: Carers have a wealth of knowledge and experience, but they are often ignored or relegated to the waiting room. Health professionals, service providers, and other frontline staff should make a commitment this week to see carers as partners in care. This will empower carers and ensure the best possible outcome for the care recipient.
  4. Tackle stigma: The stigma that exists around suicide and mental illness can be a real barrier to help seeking. Many carers also encounter stigma associated with the disability, dementia, or other condition that affects their care recipient. This week, support the journalists, artists and film-makers who are committed to raising awareness, and take a stand against the media outlets that foster ignorance and fear.

In his Federal Budget speech this year, Joe Hockey told us it was time we all became “lifters, not leaners”. Carers are some of the best lifters I know, but in Mental Health Week, let’s lean in and give them a hand.

Carers who are contemplating suicide are encouraged to call Lifeline on 13 11 14 or the Suicide Call Back Service on 1300 659 467. Carers who are experiencing depression or anxiety are encouraged talk to their GP about subsidized sessions with psychologist.

The Curated Self

My first stop in any city is the art gallery. I’m passionate about great art, I like to buy works from local artists when I travel (a habit my financial planner is desperate to break!), and I’ve often fantasised about going back to university to study art history.

What fascinates me most about art galleries is the curation. The process of deciding what pieces to include and what pieces to leave out; whether to present the pieces chronologically, by theme, or by medium; how much information to include in the accompanying description; what colour to paint the walls; and how to promote the exhibition.

Curation is, itself, an artform and I often use the language of art when I talk to academics and students about social media and their online presence. Deciding on the what, where, when, how, and why of the information we present to the public is an act of curation.

My Twitter account, for example, is carefully constructed. I work hard to keep 70-90% of my content ‘on message’ – that is, tweets about dementia, carers, suicide, health, ageing, and research – and to ensure that only 10-30% are general interest or personal. I also keep the personal content suitably generic. Enough that people get a sense of who I am and feel they can connect with me as a person, but not so much that they  know which brand of toothpaste I use.

When it comes to my tweets, I’m constantly mindful of the fact that Twitter, just like an art gallery, is a public space. My tweets can and will be seen by current or prospective employers, funding bodies, students, colleagues, industry partners, and journal editors. And, whether I like it or not, I will be judged by my tweets.

This website is also an act of curation. I realised there were parts of my personal exhibition all over the web. A few journal articles here, some media coverage there; a slideshow over on that site, some tweets over on this one. By bringing them together in one place, I had an opportunity to curate my self. I got to decide what parts of my self to include and what parts to leave out, how to group my works, and what colour to paint my walls. And in doing so I was deciding how to promote my self.

Most academics are bad at curation. It’s not something we’re trained to do and we often learn by trial and error. But if we can learn to do it well, we increase the likelihood that our research will lead to meaningful changes in practice and policy. In its first week online, for example, this site had more than 900 views (from people in 30 different countries) and I’ve had requests from clinicians around the world to use my research to support their practice. Carefully curated content can also help to breakdown the negative stereotypes of researchers and scientists and increase community engagement.

So the next time you’re at an art gallery, don’t just look at the art. Look at the walls, the lighting, the descriptions, the sequence and the promotional materials. And then, like all great artists, steal those ideas and apply them to your own work.