I was
nominated in WEGO Health Activist Awards. The 4th Annual edition of the
Awards which is organised by WEGO, a health organisation based in Boston
USA. I was nominated in four categories out of the 14; Best in show
Blog, Twitter, Facebook and Best Kept Secret; for using the online tools
to carry out sickle cell awareness.
Using social media to spread the sickle cell gospel has gained momentum in the last couple of years. But in Uganda most people use the main stream media (radios, TVs, and newspapers).
Recently, I had a discussion with one of the leading health reporter. During our discussion, I asked her why the media does not prioritise sickle cell disease in their health news despite burden it has exerted on many Ugandans. The reporter told me that it is in their best interest to prioritise sickle cell but sickle cell activists and doctors dealing with sickle cell don’t understand how the media operates.
In Uganda, according to the 1949 survey by Lehman and Rapper, 20% of the population then carried the sickle cell gene. Today 33,000 babies are born with the disease annually and 70-80% of them don’t make to five years of age. Three children under the age of five die every hour from sickle cell in Uganda.
The media play an essential role in the public perception of sickle cell disease. While the media often perpetuate unhelpful stereotypes of sickle cell, if properly harnessed, it may also be used to challenge prejudice, inform and initiate debate and so help to combat the stigma experienced by people with sickle cell disease and their caregivers. Sickle cell patients their treatments and those who provide them are all subject to overwhelmingly negative portrayals in the print and broadcast media.
In war, truth is said to be the first casualty. Something similar may be said for sickle cell disease. Dehumanisation, inaccuracy and sensationalism seem to be the media’s stock-in-trade. Media professionals make no apology for this, citing the provision of impartial, emotionally-neutral accounts as one of their least pressing concerns. They also reject the notion that they are responsible for the perpetuation of harmful stereotypes, claiming instead that they merely mirror the values and beliefs of our society.
From within the fraternity, the call to improve relationships with the media, or at least make better use of it, has remained muted. Many view the media and the few sickle cell warriors who work within it with suspicion and, possibly envy. It is seen as uncertain ground, where only the foolhardy or the talented dare to tread. What is certain, however, is that sickle cell will generate raw news material indefinitely. If sickle cell is to exert a humanising influence upon the journalistic processing of this material, it must develop a far greater understanding of the discourse of the media professions and incorporate this understanding into its practice.
For the media, the content of all accounts of sickle cell, even those with an explicit educational intent, are subsidiary to another question: is it interesting? Far more than medicine, media is a business. Its output is driven by an overriding need to gain and sustain attention. Information is a raw product that must be processed into a form to achieve this end.
Journalists do not confine themselves to a shift of emphasis. They may actively rearrange words, quotes, facts or even the chronological sequence of events, in order to create a meaning that was absent from the original event.
Media professionals are also aware of the importance of recency. Public interest is notoriously unpredictable and the short period during which an issue remains in the news defines a crucial time frame for the media.
Media workers regard a prompt response to an enquiry as essential and will return repeatedly to consult an ‘expert’, even if that expert’s reputation for promptness and fluency far exceeds his or her impartiality or knowledge. This accounts for much of the success now enjoyed by many HIV/AIDS and rights lobbying groups, all of which have devoted considerable effort to the development of a coherent media strategy.
Health correspondents have the largest mail box in the news office, filled with ever more ingenious attempts to win a journalist's precious interest. Brass doorknobs symbolising patient care, silk brassieres high-lighting breast cancer, countless ideas compete daily for the health journalist's attention.
Thereafter, the journalist must get the idea past the news desk. This process is poorly understood by sickle cell activists and doctors, who often have difficulty separating a `worthy ' story from a `newsworthy ' story. To a journalist, the latter is crucial. Their piece must stand out, with a striking headline, a powerful introduction and a good story. Credibility, accuracy and human relevance alone are insufficient to ensure passage.
The primary objective of any media house is to gain access to the population. A responsibility to educate and inform is only a secondary motive of the journalistic profession.
The media can act as a powerful tool with which to confront our own inertia. By avoiding a “them and us” situation with the media, and instead creating a working dialogue with media agents across the land. We can make a significant difference.
Using social media to spread the sickle cell gospel has gained momentum in the last couple of years. But in Uganda most people use the main stream media (radios, TVs, and newspapers).
Recently, I had a discussion with one of the leading health reporter. During our discussion, I asked her why the media does not prioritise sickle cell disease in their health news despite burden it has exerted on many Ugandans. The reporter told me that it is in their best interest to prioritise sickle cell but sickle cell activists and doctors dealing with sickle cell don’t understand how the media operates.
In Uganda, according to the 1949 survey by Lehman and Rapper, 20% of the population then carried the sickle cell gene. Today 33,000 babies are born with the disease annually and 70-80% of them don’t make to five years of age. Three children under the age of five die every hour from sickle cell in Uganda.
The media play an essential role in the public perception of sickle cell disease. While the media often perpetuate unhelpful stereotypes of sickle cell, if properly harnessed, it may also be used to challenge prejudice, inform and initiate debate and so help to combat the stigma experienced by people with sickle cell disease and their caregivers. Sickle cell patients their treatments and those who provide them are all subject to overwhelmingly negative portrayals in the print and broadcast media.
In war, truth is said to be the first casualty. Something similar may be said for sickle cell disease. Dehumanisation, inaccuracy and sensationalism seem to be the media’s stock-in-trade. Media professionals make no apology for this, citing the provision of impartial, emotionally-neutral accounts as one of their least pressing concerns. They also reject the notion that they are responsible for the perpetuation of harmful stereotypes, claiming instead that they merely mirror the values and beliefs of our society.
From within the fraternity, the call to improve relationships with the media, or at least make better use of it, has remained muted. Many view the media and the few sickle cell warriors who work within it with suspicion and, possibly envy. It is seen as uncertain ground, where only the foolhardy or the talented dare to tread. What is certain, however, is that sickle cell will generate raw news material indefinitely. If sickle cell is to exert a humanising influence upon the journalistic processing of this material, it must develop a far greater understanding of the discourse of the media professions and incorporate this understanding into its practice.
For the media, the content of all accounts of sickle cell, even those with an explicit educational intent, are subsidiary to another question: is it interesting? Far more than medicine, media is a business. Its output is driven by an overriding need to gain and sustain attention. Information is a raw product that must be processed into a form to achieve this end.
Journalists do not confine themselves to a shift of emphasis. They may actively rearrange words, quotes, facts or even the chronological sequence of events, in order to create a meaning that was absent from the original event.
Media professionals are also aware of the importance of recency. Public interest is notoriously unpredictable and the short period during which an issue remains in the news defines a crucial time frame for the media.
Media workers regard a prompt response to an enquiry as essential and will return repeatedly to consult an ‘expert’, even if that expert’s reputation for promptness and fluency far exceeds his or her impartiality or knowledge. This accounts for much of the success now enjoyed by many HIV/AIDS and rights lobbying groups, all of which have devoted considerable effort to the development of a coherent media strategy.
Health correspondents have the largest mail box in the news office, filled with ever more ingenious attempts to win a journalist's precious interest. Brass doorknobs symbolising patient care, silk brassieres high-lighting breast cancer, countless ideas compete daily for the health journalist's attention.
Thereafter, the journalist must get the idea past the news desk. This process is poorly understood by sickle cell activists and doctors, who often have difficulty separating a `worthy ' story from a `newsworthy ' story. To a journalist, the latter is crucial. Their piece must stand out, with a striking headline, a powerful introduction and a good story. Credibility, accuracy and human relevance alone are insufficient to ensure passage.
The primary objective of any media house is to gain access to the population. A responsibility to educate and inform is only a secondary motive of the journalistic profession.
The media can act as a powerful tool with which to confront our own inertia. By avoiding a “them and us” situation with the media, and instead creating a working dialogue with media agents across the land. We can make a significant difference.
