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The NS Interview: Julie Makani, tropical medicine researcher

“Mothers who have lost children now know their lives mattered”

Why choose to research sickle-cell disease?
It has hardly been recognised from a public health perspective, but the burden of sickle cell is becoming increasingly visible. In Tanzania, about 8,000 to 11,000 children are born every year with sickle-cell disease and the majority don't know they have it, so up to 90 per cent are not likely to survive into adulthood. In 2010, it was 100 years since it was discovered and there's only one drug licensed for use.

When did you decide to become a doctor?
Quite early. My mum's a nurse, but also I come from an area where sickle-cell disease is very prevalent. I have cousins who have been affected; of five of them, three died from the disease. I actually first spent three years working on malaria. My father said: "You should have started on sickle-cell disease earlier . . ." Not that it would have made much of a difference.

Carriers of the sickle-cell gene [who carry a single copy; sufferers have two] have a natural resistance to malaria. There's a horrible irony to this, isn't there - that you can be healthier and yet pass on a disease to your children?
You can perceive Africa as a kind of basket case or a place that should be pitied. But I'd like to look at the prevalence of sickle-cell disease as an advantage - this is an opportunity where we can learn about malaria and genetic disorders.

That's how I try to look at it. Because it can be overwhelming, when you're dealing with all the patients, with very few resources.

In your line of work do you need a certain type of personality?
Absolutely. Because you are questioning facts you need lots of perseverance, to be tough. And you definitely need to be optimistic.

The pharmaceutical company Pfizer earned revenue of $68bn in 2010. Do these companies invest enough in African scientists?
No, that's the tragedy. There is almost minimal investment in research and development in not only Africa, but many third world countries. You need the industry to invest in science, as well as governments and philanthropy. If it hadn't been for the Wellcome Trust having this long-term approach to science funding, it would have been very difficult for us to do what we have been able to do.

What is it like, working in a profession dominated by men?
I am very much aware of that. It's tough, very challenging. One of the things which makes a big difference is having successful women mentors who understand things like balancing child and family life with work. This then allows me perspective and the ability to focus on important things.

Does music have a therapeutic role to play in medicine?
If one looks at suffering with sickle-cell patients, pain is one of the most common debilitating factors. Music allows patients a chance to communicate in a different way, which is quite powerful, I think.

Is there anything you regret?
Yes. Two or three of my colleagues left science because they didn't get the right opportunities at the right times. These are brilliant people, now stuck. It's a big loss. This is one of my regrets. I wish there was a way of identifying talent and getting those people more into pure science.

Do you vote?
Yes, enthusiastically. Both my parents are very political. I've taken the approach that I want to change things from the bottom up, which is why I've stayed in the ward. But there is definitely a role for political leadership.

In science in the UK, it's very . . . patriarchal - it discourages fast-tracking. Very often I was told: "You are not ready yet."

Do you think the way of working over here can be too traditional?
The danger for an African scientist, because there are so few of us, is that you end up taking administrative positions, or leadership positions when you are not ready yet. You can end up being caught in a position where you can't learn, you can't mature, you can't be a proper scientist - whatever that really is.

You find as an African that, by the time you finish your PhD, you are asked to take on these new roles on committees or as a department head, which is good, but also bad because it takes you away from science.

Was there a plan?
Yes. I was very clear I wanted to train in the UK and then develop my career back home. I would really like to retire at 50 and run centres of
excellence in Tanzania where we can make an impact. This is my dream: training the next generation of scientists.

Are we all doomed?
Not at all! There are a lot of problems, but there is a lot of success.

When you talk to mothers who have lost their children, they know the life of that child has mattered when we learn and progress. The memory of the child will continue.

Defining Moments

1970 Born in Tanzania
1994 Graduates as a medical doctor
2001 Becomes Wellcome Trust fellow in department of haematology and blood transfusion, Muhimbili University
2009 Gains PhD from Open University
2009 Awarded a place on Archbishop Tutu Leadership Fellowship Programme, run in conjunction with Oxford University
2011 Wins Royal Society Pfizer Award for her research into sickle-cell disease

Alice Gribbin is a Teaching-Writing Fellow at the Iowa Writers' Workshop. She was formerly the editorial assistant at the New Statesman.

This article first appeared in the 16 January 2012 issue of the New Statesman, The battle for Britain

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Tweeting terror: what social media reveals about how we respond to tragedy

From sharing graphic images to posting a selfie, what compels online behaviours that can often outwardly seem improper?

Why did they post that? Why did they share a traumatising image? Why did they tell a joke? Why are they making this about themselves? Did they… just post a selfie? Why are they spreading fake news?

These are questions social media users almost inevitably ask themselves in the immediate aftermath of a tragedy such as Wednesday’s Westminster attack. Yet we ask not because of genuine curiosity, but out of shock and judgement provoked by what we see as the wrong way to respond online. But these are still questions worth answering. What drives the behaviours we see time and again on social media in the wake of a disaster?

The fake image

“I really didn't think it was going to become a big deal,” says Dr Ranj Singh. “I shared it just because I thought it was very pertinent, I didn't expect it to be picked up by so many people.”

Singh was one of the first people to share a fake Tube sign on Twitter that was later read out in Parliament and on BBC Radio 4. The TfL sign – a board in stations which normally provides service information but can often feature an inspiring quote – read: “All terrorists are politely reminded that THIS IS LONDON and whatever you do to us we will drink tea and jolly well carry on thank you.”

Singh found it on the Facebook page of a man called John (who later explained to me why he created the fake image) and posted it on his own Twitter account, which has over 40,000 followers. After it went viral, many began pointing out that the sign was faked.

“At a time like this is it really helpful to point out that its fake?” asks Singh – who believes it is the message, not the medium, that matters most. “The sentiment is real and that's what's important.”

Singh tells me that he first shared the sign because he found it to be profound and was then pleased with the initial “sense of solidarity” that the first retweets brought. “I don't think you can fact-check sentiments,” he says, explaining why he didn’t delete the tweet.

Dr Grainne Kirwan, a cyberpsychology lecturer and author, explains that much of the behaviour we see on social media in the aftermath of an attack can be explained by this desire for solidarity. “It is part of a mechanism called social processing,” she says. “By discussing a sudden event of such negative impact it helps the individual to come to terms with it… When shocked, scared, horrified, or appalled by an event we search for evidence that others have similar reactions so that our response is validated.”

The selfies and the self-involved

Yet often, the most maligned social media behaviour in these situations seems less about solidarity and more about selfishness. Why did YouTuber Jack Jones post a since-deleted selfie with the words “The outmost [sic] respect to our public services”? Why did your friend, who works nowhere near Westminster, mark themselves as “Safe” using Facebook’s Safety Check feature? Why did New Statesman writer Laurie Penny say in a tweet that her “atheist prayers” were with the victims?

“It was the thought of a moment, and not a considered statement,” says Penny. The rushed nature of social media posts during times of crisis can often lead to misunderstandings. “My atheism is not a political statement, or something I'm particularly proud of, it just is.”

Penny received backlash on the site for her tweet, with one user gaining 836 likes on a tweet that read: “No need to shout 'I'm an atheist!' while trying to offer solidarity”. She explains that she posted her tweet due to the “nonsensical” belief that holding others in her heart makes a difference at tragic times, and was “shocked” when people became angry at her.

“I was shouted at for making it all about me, which is hard to avoid at the best of times on your own Twitter feed,” she says. “Over the years I've learned that 'making it about you' and 'attention seeking' are familiar accusations for any woman who has any sort of public profile – the problem seems to be not with what we do but with who we are.”

Penny raises a valid point that social media is inherently self-involved, and Dr Kirwan explains that in emotionally-charged situations it is easy to say things that are unclear, or can in hindsight seem callous or insincere.

“Our online society may make it feel like we need to show a response to events quickly to demonstrate solidarity or disdain for the individuals or parties directly involved in the incident, and so we put into writing and make publicly available something which we wrote in haste and without full knowledge of the circumstances.”

The joke

Arguably the most condemned behaviour in the aftermath of a tragedy is the sharing of an ill-timed joke. Julia Fraustino, a research affiliate at the National Consortium for the Study of Terrorism and Responses to Terrorism (START), reflects on this often seemingly inexplicable behaviour. “There’s research dating back to the US 9/11 terror attacks that shows lower rates of disaster-related depression and anxiety for people who evoke positive emotions before, during and after tragic events,” she says, stating that humour can be a coping mechanism.

“The offensiveness or appropriateness of humor seems, at least in part, to be tied to people’s perceived severity of the crisis,” she adds. “An analysis of tweets during a health pandemic showed that humorous posts rose and fell along with the seriousness of the situation, with more perceived seriousness resulting in fewer humour-based posts.”

The silence

If you can’t say anything nice, why say anything at all? Bambi's best friend Thumper's quote might be behind the silence we see from some social media users. Rather than simply being uncaring, there are factors which can predict whether someone will be active or passive on social media after a disaster, notes Fraustino.

“A couple of areas that factor into whether a person will post on social media during a disaster are issue-involvement and self-involvement,” she says. “When people perceive that the disaster is important and they believe they can or should do something about it, they may be more likely to share others’ posts or create their own content. Combine issue-involvement with self-involvement, which in this context refers to a desire for self-confirmation such as through gaining attention by being perceived as a story pioneer or thought leader, and the likelihood goes up that this person will create or curate disaster-related content on social media.”

“I just don’t like to make it about me,” one anonymous social media user tells me when asked why he doesn’t post anything himself – but instead shares or retweets posts – during disasters. “I feel like people just want likes and retweets and aren’t really being sincere, and I would hate to do that. Instead I just share stuff from important people, or stuff that needs to be said – like reminders not to share graphic images.”

The graphic image

The sharing of graphic and explicit images is often widely condemned, as many see this as both pointless and potentially psychologically damaging. After the attack, BBC Newsbeat collated tens of tweets by people angry that passersby took pictures instead of helping, with multiple users branding it “absolutely disgusting”.

Dr Kirwan explains that those near the scene may feel a “social responsibility” to share their knowledge, particularly in situations where there is a fear of media bias. It is also important to remember that shock and panic can make us behave differently than we normally would.

Yet the reason this behaviour often jars is because we all know what motivates most of us to post on social media: attention. It is well-documented that Likes and Shares give us a psychological boost, so it is hard to feel that this disappears in tragic circumstances. If we imagine someone is somehow “profiting” from posting traumatic images, this can inspire disgust. Fraustino even notes that posts with an image are significantly more likely to be clicked on, liked, or shared.

Yet, as Dr Kiwarn explains, Likes don’t simply make us happy on such occasions, they actually make us feel less alone. “In situations where people are sharing terrible information we may still appreciate likes, retweets, [and] shares as it helps to reinforce and validate our beliefs and position on the situation,” she says. “It tells us that others feel the same way, and so it is okay for us to feel this way.”

Fraustino also argues that these posts can be valuable, as they “can break through the noise and clutter and grab attention” and thereby bring awareness to a disaster issue. “As positive effects, emotion-evoking images can potentially increase empathy and motivation to contribute to relief efforts.”

The judgement

The common thread isn’t simply the accusation that such social media behaviours are “insensitive”, it is that there is an abundance of people ready to point the finger and criticise others, even – and especially – at a time when they should focus on their own grief. VICE writer Joel Golby sarcastically summed it up best in a single tweet: “please look out for my essay, 'Why Everyone's Reaction to the News is Imperfect (But My Own)', filed just now up this afternoon”.

“When already emotional other users see something which they don't perceive as quite right, they may use that opportunity to vent anger or frustration,” says Dr Kirwan, explaining that we are especially quick to judge the posts of people we don’t personally know. “We can be very quick to form opinions of others using very little information, and if our only information about a person is a post which we feel is inappropriate we will tend to form a stereotyped opinion of this individual as holding negative personality traits.

“This stereotype makes it easier to target them with hateful speech. When strong emotions are present, we frequently neglect to consider if we may have misinterpreted the content, or if the person's apparently negative tone was intentional or not.”

Fraustino agrees that people are attempting to reduce their own uncertainty or anxiety when assigning blame. “In a terror attack setting where emotions are high, uncertainty is high, and anxiety is high, blaming or scapegoating can relieve some of those negative emotions for some people.”

Amelia Tait is a technology and digital culture writer at the New Statesman.