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Stigmatization versus Smooth Return of Ebola Survivors

DECEMBER 2, 2014 By Joseph Dumbuya

British nurse Will Pooley (an Ebola survivor) poses with Sierra Leoneans who have also recovered from Ebola
British nurse Will Pooley (an Ebola survivor) poses with Sierra Leoneans who have also recovered from Ebola

‘We will not tolerate those who stigmatize Ebola survivors. Actions will be taken against you if you are found wanting. Treat them as your sisters and brothers.’ This was the admonition from the First Lady, Sia Nyama Koroma, at a recent ceremony marking the discharge of sixty-three (63) Ebola patients who were discharged from the Hastings Treatment Centre having survived the disease.

On a positive note, the Sierra Leonean health workers are making us very proud. The Hastings Treatment Centre, which is managed wholly by Sierra Leonean health workers, is the only center in the country which has recorded more survivors than deaths from the disease.

But with Ebola there is no shortage of challenges even for those who have survived the disease. In fact surviving the disease is half-way through the journey. The journey back home can be very tortuous and makes for little time to celebrate brush with death.

Every day you hear mind-boggling stories of Ebola survivors struggling to resume normal life. Those who are lucky are called names while those who are less lucky are banished, shunned, intimidated, harassed or assaulted.

There is no denying a lot of efforts have gone into ensuring Ebola survivors make a smooth return into mainstream society. This includes lighthearted threats against those who stigmatize them. But it would seem there is still a long way to go as there is no evidence to suggest the stigmatization is lessening. It does not help the byelaws do not address this question.

The question we need to ask ourselves is this: why is it that inspite of all the best efforts stigmatization of Ebola survivors continue to persist?

You will recall a couple of weeks – Is it two months? – into the outbreak of the Ebola in May this year there were serious questions bothering on the accuracy and suitability of the messages. It was apparent they were counterproductive. For instance, at first we were lead into believing there is no cure for Ebola. The questions which come to mind are: Well, if there is no cure, why bother go to the treatment center? What difference would going to the centre make? I may as well stay put and die in the comfort of my home.

 The message was therefore modified to say there is no known cure for the virus. This also had some problems. It was further modified to say if you report early to the Treatment Centre you have a very good chance of surviving. This has been supported with regular updates on those who have survived the disease which now runs into over a thousand.

Well, so much for what is said or written about the survival rate among Ebola patients. They say: “seeing is believing’. There is also an opportunity to visualize progress in the survival rate. It is not uncommon to mark discharge from the Treatment Centre with a ceremony, most times shown on television. Some of the discharge ceremonies have been graced by President Koroma and the First Lady, Sia Nyama Koroma. With the positive news from the Hastings Treatment Centre regarding the increasing number of survivors being churned out on a regular basis, things can only get better.

It is important to underline that while the messages regarding cure for the disease have changed over time, the other regarding the health status of those who have survived the disease – the fact that they are not infectious – has remained unadulterated since the outbreak of the disease. This should serve as an advantage to survivors.

But the reality points to the contrary. Unlike the positive behavior change to early treatment, we continue to struggle in the area of ensuring a smooth return into society for survivors. In my view, this could be due in large part to the manner both issues are reported. In the case of early treatment and cure for the disease there has been a health mix of both negative and positive reports.

 In the case of the latter, we have regular updates on those who have survived the disease. The fact that there has been a steady increase in the number of survivors has been more than helpful.  The successes we have seen at the Hastings Treatment Centre goes a long way to give credence to the messages. In the case of the negative reports, we know there have been problems with space to accommodate all the positive cases taken to the Treatment Centres.

In contrast there has been too much negativity around the kind of reception survivors receive when they return home. You only need to monitor the media to have an idea of negative reporting on survivors returning to mainstream society.

At the same time, we have not seen the same amount of efforts going into showcasing the success stories by the media. There is no question we have a lot of survivors making a hitch-free or smooth return back to their homes. They have been welcomed and share the same home with those who have not been infected by the disease. I understand we have a lot of this people in Kailahun and Kenema Districts.

Also, there has been a failure of leadership in countering stigmatization.  We have to go beyond the rhetoric and do something concrete. There is urgent need for leaders to lead by examples. This means those gracing discharge ceremonies should go the extra mile to shake hands with and embrace the survivors. If the President of the United States Barack Obama can do just that to a nurse who survived the disease, I see no reason why President Koroma cannot do the same. This is all part of building confidence in the campaign.

It equally important to have survivors take the lead in countering some of these falsehood by engaging in sensitization programmes. It is not good enough to have those who have not been infected do sensitization; some of who may be driven by the Ebola money. Bob Marley says: ‘He who feels it, knows it”. Survivors should be given a chance to take their future into their own hands.

Also, they should be incorporated into the Ebola campaign by way of employing them. They could serve at treatment centres as counselors and within National Ebola Response Center (NERC) structures at district and national level. There is this case of a lady in Guinea who having survived the disease decided to work at a Treatment Center. She was quoted on BBC as saying she feels indebted to pay back to society for the care she had received.

It is important to underline that the over dramatization of stigmatization suffered by survivors poses a serious challenge to Ebola campaign. The problem stems from the fact that we are bombarded with bad news regarding the problems survivors face and little or nothing about positive experiences, which happen to be in the majority. This is in no way helpful to the campaign.

It only serves to blind people to the positives and as such skew people’s understanding of the disease towards negative experiences. This has the potential of hardening falsehoods and reinforcing ignorance about the disease. They say: ‘Knowledge is power.’

A way out of this quagmire is to give people a fair and balance report on the experiences of people returning home. This means no efforts should be spared in showcasing the positive experiences of survivors returning to their homes. This has the advantage of changing perceptions and helping people move on with their lives.  Instances of successful return abound around the country, the media owe us a duty to report them. Yes, the survivors have some positive stories to tell, for goodness sake report them.

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