Could we be doing a better job of working with the media?
People working in leprosy often talk about the need to make better use of the mass media. But what do we mean by this?
The media perform a number functions that can all play an important role in increasing awareness. These include informing the public about the basic facts of leprosy, especially that it is curable; monitoring the effectiveness of measures to diagnose, treat, and rehabilitate people; exposing examples of discrimination, such as outdated legislation; influencing policymakers by sensitizing them to the issues; and championing the cause of individuals and communities seeking to overcome social prejudice and make their way in the world.
In such ways, the media can be extremely influential, by virtue of their enormous reach. But not everything that happens in the world gets into the media. News organizations have criteria for deciding whether to run a story: Is it newsworthy? Is it timely? Is it relevant to a lot of people? Does it have emotional impact? And, given the fact that most news outlets are commercial enterprises, will it sell more newspapers or attract more viewers?
Leprosy is not a big news story for the media, so they have a tendency to ignore the issue. Worse, when they do turn their gaze on leprosy, in their choice of terminology, images and storyline, they often stereotype and stigmatize.
Anyone who uses Google Alerts can see how often the word "leper" crops up in English-language media - both in stories about the disease, and in stories that trade on the word's pejorative connotations to make a point about an individual or group perceived as socially or morally unacceptable.
Sometimes, an otherwise good article about leprosy will be undone by a thoughtless headline. The online edition of The Guardian newspaper ran a piece in October titled "Egypt's last leper colony broaches time of integration." It later changed the wording to "leprosy colony" and included a note to the effect that the original headline was in breach of the paper's style guide, which deems the term "inappropriate and stigmatizing."
In addition to the style manuals of individual news organizations, in the UK there is also an industry-wide Editors' Code of Practice drawn up by editors themselves under the auspices of the UK Press Complaints Commission. On discrimination, the code states: "The press must avoid prejudicial or pejorative reference to an individual's race, colour, religion, gender, sexual orientation or to any physical or mental illness or disability." It continues, "Details of an individual's...physical or mental illness or disability must be avoided unless genuinely relevant to the story."
While style guides and codes of practice can be used to hold media organizations to account over use of the "L" word, I wonder if guidelines alone are enough. The word is so deeply engrained that it is used unthinkingly, as if the thought has never occurred that it may be inappropriate. Perhaps editors need to be given compelling reasons why the term offends - and who better to tell them than people affected by leprosy themselves.
To sensitize the public, we have to sensitize the mass media. That's why media workshops on leprosy have been held in India and elsewhere for this purpose. Yet is there not also a need for workshops to help those working in leprosy to make better use of the media?
Long-established NGOs all have dealings with the media. The Leprosy Mission successfully approached the BBC over its use of terminology. LEPRA and ILEP contacted The Guardian over the article mentioned above.
Leprosy stakeholders in different countries all have stories they want to share with the media. Maybe they should be sharing with each other their experiences, both good and bad, of using the media.
What approaches work and what don't. How to interest journalists in a story and frame the issues in a way that meets their criteria for what's newsworthy. How to be interviewed when reporters come calling. How to write a press release. How to organize a media event.
Beyond leprosy, there are plenty of other sectors working to see that they are fairly represented in the media - HIV/AIDS, disability, mental health, to name but some. Let's draw on their experiences, too, as well as those of different stakeholders within leprosy, and compile a manual of best practices. It should benefit coverage of leprosy, and in the process, reflect well on the media too.
Jonathan Lloyd-Owen is editor of the WHO Goodwill Ambassador's Newsletter.