journalism

To Wong Foo, Thanks For Everything, Julie Newmar

/ Siobhan O'Dwyer

I woke up at 4am this morning full of dread. My colleagues and I had recently conducted a study of homicidal ideation in family carers and it was about to hit the press. I was terrified that dodgy journalists and click-hungry editors would twist the story, shaming carers and making it even harder for them to ask for or receive the support they need. I was worried that the carers who trusted me with their stories would think I’d sold them out and that the advocacy organisations I work with would regret ever having supported the research.

It’s now almost 8pm and I’ve barely been off the phone. I’m exhausted, I’m hungry, I’m pretty sure I smell, and I am completely overwhelmed by the positive response. From the first story in the Sydney Morning Herald, to an interview with The World Today that I did in my dressing gown, every journalist I’ve spoken to has been respectful, cautious, and genuinely concerned about the wellbeing of carers. Even the outlets that are not normally known for their tact have been incredibly compassionate. 2GB’s Chris Smith, for example, sent a fruit basket to one carer who called in, because he felt so helpless in the face of her despair. And the fact that this was the Most Read story on The Age website today is testament to just how important these issues are!

It’s been a privilege to spend my day talking about carers and the amazing work that they do, raising awareness of the dark times, and encouraging a public discussion about how our society thinks about care. I’ve spoken to journalists from Tamworth to Toorak and I want to send a heartfelt thanks to every one of them for helping us raise the profile of carers and being brave enough to have these difficult conversations without resorting to nasty headlines and cheap clickbait. I especially want to thank those who gave carers the opportunity to call in and share their stories on air – it was compelling, heartbreaking, and a thousand times more powerful than anything I said.

But now my mascara is sliding down my face, my throat is sore, and it’s time for bed. Tomorrow I will get up and keep fighting the good fight. Because carers are worth it!

Just People

/ Siobhan O'Dwyer / 4 Comments

Feral. A menace to themselves and others. Troublemakers. Mad, bad, and dangerous to know. That’s how Christopher Jay described people with dementia in a recent article in the Australian Financial Review. 

The purpose of the article was to highlight the Australian Government’s call for tenders for the creation of Severe Behaviour Response Teams. According to Jay, these teams will be “a mobile workforce of clinical experts available to provide timely and expert advice to Commonwealth-funded approved residential aged care providers that request assistance to address the needs of people with very severe and extreme behavioural and psychological symptoms of dementia (BPSD). SBRTs will assess the causes of the behaviours, assist care staff until the immediate crisis is resolved, develop a care plan to address and deal with behaviours, then provide follow-up assistance as needed. This may include the training and upskilling of staff to enable them to appropriately manage residents with extreme behaviours.”

And I’ve got no problem with that. The behavioural and psychological symptoms of dementia are a serious issue and staff in aged care facilities do need better training and support to manage them. My problem is with Jay’s implication that (a) people with dementia are being willfully violent and (b) the solution is to restrain and sedate.

Dementia is the term used to describe a collection of symptoms caused by disorders affecting the brain. Disorders like Alzheimer’s disease, Parkinson’s disease, Huntington’s disease, and Creutzfeldt-Jacob disease. Consequently, a person with dementia has no more control over the behavioural and psychological symptoms of their condition than a person with epilepsy has over their seizures. Restraints and sedation are inhumane. They also increase morbidity and mortality, and do nothing to address the underlying cause of BPSD. But here’s the kicker: while a certain level of behavioural and psychological disturbance is a normal part of dementia, the most extreme behaviours are caused by other people’s inability to meet the needs of a person with dementia when, as a result of a degenerative brain disorder, they have lost the capacity to express those needs. Most extreme behaviours are the result of social isolation, a lack of meaningful activity, overstimulation, and undiagnosed or untreated pain and infection. A failure to understand this, and respond appropriately, is the real reason that staff, families, or other residents in aged care find themselves on the receiving end of physical violence, verbal aggression, or resistance. It’s also, apparently, the reason that journalists write inflammatory articles in major newspapers.

I wasn’t the only one who was horrified by Jay’s ignorance. The dementia community were vocal in their disgust, but letters and tweets to the Financial Review have gone unanswered. The Australian Press Council told those who lodged complaints that they saw nothing worth investigating. And when I offered to write a response for The Conversation, I was told that calling people with dementia feral wasn’t “a strong enough hook”. I couldn’t help but wonder if the response would have been different if Jay had described Indigenous Australians as feral. Or gay men. Or people with a disability. Or people with mental illness.

I once went to a costume party dressed as Demi Moore’s character from the movie GI Jane. The movie is about the first woman to complete Navy SEAL training and there’s a great scene where an African American soldier tells Moore’s character that the discrimination she’s facing now is the same discrimination his people faced 50 years ago. He says “You’re just the new nigger on the block, that’s all”. And so it is with dementia.

People fear what they don’t understand and a huge amount of work has gone into helping people understand homosexuality, disability, mental illness, and Indigenous culture, and helping our society move away from language, legislation, and funding models that view institutionalisation, criminalisation, and dehumanisation as the “solution” to these “problems”.

Around the world hundreds of thousands of people have devoted their lives to dementia. Researchers, advocates, health professionals – all working to increase awareness, understanding, and funding, and develop better models of diagnosis, treatment, and care. But a single article in an influential newspaper can undo years of good work. And when The Press Council and The Conversation are complicit, it’s easy to feel defeated. But what we’ve learnt from sexuality, disability, mental illness, and Indigenous advocates is that social change takes time, that it starts at the grass roots, and that we cannot give up. We must keep doing good work, keep agitating for change, and keep educating the likes of Christopher Jay.

People with dementia are not feral. They are not a menace to society. They are not mad, bad, or dangerous to know. They are just people. People who have worked jobs, raised children, loved, and been loved. People who are trying to keep their dignity and humanity as their brain (and the world) rips it away. People who need our support and our understanding. People.

Love’s Not Enough

/ Siobhan O'Dwyer

Since its release in 1967, The Beatles’ All You Need Is Love has been adopted as the anthem for everything from the anti-war movement to a Las Vegas casino.  And now an article published in The Australian wants us to believe it’s also a good anthem for dementia.

In an article titled Dementia: A scourge that only love can overcome, Trent Dalton presents the moving story of Brian Sands, a man doing everything he can to keep the love alive as his wife’s dementia progresses. I’m a big believer in the power of stories. To paraphrase Brene Brown, stories give soul to data. They help us to understand what it means when we say “320,000 Australians are living with dementia” or “200,000 Australians identify themselves as the primary carer for a family member with dementia”. But stories without data are just anecdotes and anecdotes don’t change research, policy, or practice. Neither does love.

Love doesn’t pay for respite care when you’ve used up the measly 63 days supported by the Government.

Love doesn’t stop you from contemplating suicide when the physical and psychological toll of caring is more than you can bear.

Love doesn’t pay a researcher’s salary while they search for a cure, a treatment, or better care.

Love doesn’t make aged care a more attractive place to work.

And love doesn’t make it any easier to come to terms with a diagnosis of dementia.

Although Dalton’s article honours the experience of Brian and Rosemary, it is simply bad journalism to present a story of dementia without mentioning some facts and figures. Like the fact that the demand for family carers in Australia will exceed supply by 2029. Or the fact that without significant policy change there will be a shortage of nearly 60,000 staff in Australian aged care facilities within two decades. Or the fact that the Abbott Government’s $200 million for dementia research is just spare change compared with what’s actually needed to find cures, treatments, and better models of care.

Media articles that focus only on individual stories contribute to a social and political view of dementia as a personal issue. A matter for families to deal with; in the privacy of their own homes. This is a view that makes it easy for governments to tell themselves (and voters) that they are doing enough. But dementia is not a personal issue. It is a social, political, and economic one, and we ignore it at our peril.

People with dementia, family carers, and researchers deserve better from the Government and they certainly deserve better from newspapers and journalists. If we want an anthem for dementia, let’s look to The King: A little less conversation, a little more action please.

Lifting & Leaning

/ Siobhan O'Dwyer

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.

Who’s Afraid of the Big Bad Journalist?

/ Siobhan O'Dwyer / 8 Comments

I was recently invited to take part in a workshop, hosted by the AAG, entitled ‘Navigating the Media Jungle’. It’s a dreadful title, but it reflects the level of trepidation most researchers feel about having to engage with the media. In preparation for the workshop I’ve put together my top tips for postgraduate students, early career researchers, and academics seeking to engage the media. I hope these will reduce your fear and make your next encounter with a journalist a more rewarding one (for you and them!).

Stalk Your Prey
How much do you know about the media? How much (and what type of) media do you consume? If you want to navigate the media jungle, you need to stalk your prey (that’s the only jungle reference in the whole post, I promise!). By consuming plenty and varied media, you’ll have a better understanding of where and how to pitch your work for maximum impact.

But don’t just consume media passively, pay attention to the following….

  • How often do they publish or broadcast? Constantly, daily, weekly, monthly…
  • What type of pieces do they produce? Short, long, left-leaning, conservative, human interest, political, scientific…
  • Who is their audience? Children, adults, older adults, working class people, middle class people, people from culturally and linguistically diverse backgrounds…

This type of information will allow you to target your work to the outlets most likely to run with it (see ‘Pick Your Battles’ below), and give you a sense of the timeframes within which you’ll need to work. Programs like The Media Report also offer great insight into the ‘behind the scenes’ of journalism and the media.

Make Friends with the Journalists
Repeat after me: Journalists are people too. Academics often talk about journalists like they’re the enemy, but if you’re really passionate about communicating your work to the public you need to make them your ally.

Twitter is a great way to engage with journalists. You can use it to provide positive feedback on their latest story, introduce them to your work, and respond to calls for ‘talking heads’. If a journalist comes to know you as a reliable, positive source, they’re much more likely to be interested in your work down the track. Top tip:  Don’t badger them. If a journalist decides you don’t have enough for a story, say thank-you and move on.

Also, if you’re working with print journalists, it’s okay to ask to see a draft of the article. Some journalists will say no (& you must respect this!), but those who care about getting the facts right are often happy to oblige. A few tips to smooth the way…

(1) Explain why you want to see it.

(2) Don’t change the copy. Journalists are entitled to their perspective on a story and as media professionals they know what will attract readers, listeners and viewers. So correct technical errors, but leave the rest alone.

(3) Give feedback promptly. Journalists work to tight deadlines and if you don’t give your feedback promptly, they will go ahead without your input.

Start Small
If you’re just starting out, try pitching your work to local papers and community radio stations. They ‘re always eager for stories – particularly those that have a local flavour – and are less intimidating for first timers.

Also, start with print media (where there’s time to review a story before it goes to press and kind journalists will edit your waffly sentences into something tighter) and work your way up to radio and then television. Print and radio interviews are often done over the phone, which allows you to have your notes in front of you and be wearing whatever makes you comfortable. Television requires you to speak without notes and look professional, so it’s not for the faint-hearted.

Pick Your Battles
While it’s tempting to send your press release to every media outlet, it’s not always the smartest move. It’s important to pick the outlets that are going to do justice to your research and whose journalists have the necessary time and experience.

If your work has the potential to be sensationalised (topics like suicide or terrorism, for example), you may want to steer clear of the commercial television and radio programs, and stick to the ABC (in Australia), the BBC (in the UK), and PBS or NPR (in the USA). Similarly, if your work is highly technical, you may want to avoid the major daily papers and instead target high-end websites and magazines like Wired or New Scientist. If your work has a ‘human interest’ angle and you can connect journalists with real cases, target longer-form publications such as The Monthly or The Atlantic. These are also good targets for people whose work is historial, political, or creative.

Prepare, Prepare, Prepare
Unless you are a seasoned professional (and trust me, you’re not), you should never do a media interview ‘off the cuff’. Never! Ever!

Instead, prepare a series of short, concise statements about your work. Think about the type of questions a journalist is likely to ask and have one statement prepared for each. Print these out and have them in front of you when you’re doing an interview. Make sure that you include some statements about the real world implications of your work and, where possible, be ready to recommend a real person the journalist can talk to (i.e. someone who’s had the experience you’re talking about, or whose life would be affected by the findings).

It’s also okay not to answer a question. Do this politely by explaining that it’s outside the scope of your expertise or wasn’t part of the research you conducted.

Work with Your University’s Media Office
Your University’s media officers deal with journalists every day and many of them are former journalists. They can help you draft and distribute press releases, arrange interviews, and even give you one-on-one media training.

A few tips to help them help you…

(1) Give them plenty of warning. You are not the only researcher in the university and it takes time to draft press releases and liaise with journalists. A week’s notice is ideal, even more if you can swing it.

(2) Draft your own press release, or at least provide some dot points. This can help if your work is highly technical or if you have a particular spin you’d like put on your story. When drafting press releases, remember to write for your audience. Keep the language simple, put the most important information at the top, and provide real world examples.

(3) Tell them who you’d like to target. Use the information provided in ‘Stalk Your Prey’ and ‘Pick Your Battles’ (see above) to identify the media outlets most likely to be interested in your story.

Work with the Journal’s Publishers
If you want media coverage to coincide with the publication of an academic journal article, you should work with the journal’s Publishers. They can tell you the exact date that your paper will go online and you can use this to schedule your press release. As a professional courtesy you should send a copy of any media coverage to the Publishers and the journal’s Editor.

Be Available
Your diary should be completely clear the day you send out a press release. You should have access to the internet and your phone should be fully charged. If a journalist can’t get hold of you they will either (a) write the story without your input or (b) dump the story and move on to something else. Neither is a good outcome.

On a related note, once you develop a profile, journalists may contact you for commentary on current events or other research. Only say yes if you really know what you’re talking about and, if you have to say no, try to recommend someone else so that you get a reputation for being professional and helpful.

Get More Bang for Your Buck
The 24hr news cycle means there is a constant demand for ‘new’ news. Unless your story has legs (i.e. it’s the cure for cancer), it’s unlikely to be replayed or republished after the initial broadcast or print run. But you can maximise its impact with your own Twitter account or Facebook page, as can your colleagues and your University. If you have a website or blog, you might consider adding a media page that includes links to all the coverage of your work.

Accept That Your Story May Not Make It
If the Prime Minister resigns the day you send out your press release, chances are your story won’t run. This  is just the way it works and there’s nothing you can do about it. Keep your fingers crossed and hope for a slow news day.

Keep It In The Family
Finally, in the interests of full disclosure, I should note that I am related to a journalist. I sent a draft of this post to my sister – the talented Erin O’Dwyer – to make sure I hadn’t missed or misrepresented anything. She gave all of the above her journalist’s seal of approval and offered the following additional tips:

  • Be easily searchable. (My interpretation: If you’re not online, you don’t exist)
  • Reply promptly to social media, email and phone enquiries.
  • Keep your language informal. (She wrote this twice, so it must be important)
  • Add yourself to expert lists, including your mobile phone number.
  • Never send a press release to a generic info@ or news@ email address. Phone and ask to speak to the chief of staff or the specific reporter. Then send your release directly to the right person.
  • If a journalist has recently written a story on a particular topic, say asthma or loneliness, they’re unlikely to want to revisit the same topic straight away.

Got any other tips? Please leave a comment.