Friday, December 13, 2013

The forgotten disease - From Ethiopia slums Anne Widdecombe reveals Leprosy hell

Perhaps it conjures up visions of biblical times when Christ was healing the outcasts or maybe the final scenes in Ben Hur. Possibly people will think of the diseased ringing bells and calling out "unclean". Certainly everybody will recall that lepers were despised and shunned through fear of contagion and that they had to live outside normal society. But now?

Most people will say it is all different. It has been eradicated hasn't it? Leper colonies are things of the past.

In fact the only aspect of the above picture that is truly consigned t
o the past is the nomenclature. We no longer say leper colonies but instead talk about communities of people affected by leprosy and that is almost the sum of the difference. Far from being eradicated, leprosy is still found in 31 countries across Africa, Asia, Indonesia and South America. It is not even in decline with nearly a quarter of a million new cases notified in 2012.


Nor have attitudes changed much, as I discovered when I visited the Woreda slum just outside Addis Ababa in Ethiopia during a trip with the charity organisation The Leprosy Mission. In this terrible area, where human and animal waste flow around the barefooted occupants, where there is no pure water supply and no sanitation, tiny, one-roomed huts are crammed with six or seven people. Yes, I have seen that before but it was out in the fresh air of the Kenyan bush where the mud huts were spaced out and communal middens supplied, where there was no shortage of any food and people helped each other.
In the first hut I entered at Woreda I found two men. One was blind and had lost his feet to leprosy. He could only sustain himself, the woman, the other man and the two children by begging outside a church but, crippled by the absence of feet and unable to see, the only way he could get there was by shuffling on his backside through the excrement. The other man was too emaciated to stand, while the children scavenged what was patently several days old food from a filthy plate. The smell was terrible. Thus they lived day after day.

Nobody comes near them. Anybody getting leprosy today lives as isolated an existence as he would have done in the time of Christ and that has an impact on families as well as the sufferers themselves. In one dwelling a family had saved enough to send the daughter to school but she chooses to attend one seven miles' walk away so that nobody will know she comes from a leprosy community.

Then there was a man who had benefited from the work of a Leprosy Mission housing project. He was living in a very basic hut but with sanitation. He lied to his children about why he has no fingers, telling them he lost them in an accident because he doesn't want them to know the truth.
The stigma has another catastrophic effect: people delay seeking treatment or, because there is so little knowledge about the disease in communities that prefer to pretend it doesn't exist, they simply don't recognise the symptoms. The tragedy is that there is now treatment available. There is no vaccine and no means of reversing the disease but it can be stopped in its tracks. One man noticed that his fingers were adopting a clawing formation and mentioned it to a friend who, thankfully, knew the signs and urged him to seek treatment. He did and was thus able to continue his work as a tailor.

But for too many the recognition of what ails them comes too late and they lose limbs or sight or both. With that comes loss of livelihood: the labourer becomes a beggar, the farmer comes to the city for there is no treatment in the countryside. He exchanges the fresh air and water well for a leprosy slum and good repute for the role of an untouchable.

Then there is the absence of awareness caused by numb limbs. One woman had her finger eaten by a mouse in the night because she couldn't feel the pain and so didn't wake up. Another sleeping too near a fire suffered massive burns to her arm and similarly, bereft of feeling, failed to wake.

And what does the Ethiopian government do? It builds a dam and has the gall to ask the charities to contribute to it. What does the West do? Funds a pop group that sees itself as the Ethiopian answer to the Spice Girls. What do the people of Ethiopia do? They give from their own meagre funds, happy to drop alms in any begging bowl as long as they do not have to touch the chap who is holding it.

The work of The Leprosy Mission is manifold. Obviously treatment is crucial and the Alert Hospital in Addis Ababa provides it under the aegis of the mission and charitable partners. Education about symptoms and cure is also essential as is slum clearance, the provision of sanitation and purification of the water supply. There is the trickier question of income for those who are shunned and cast out. Where can they work? The answer is often for themselves and the Mission helps them to set up businesses.

One man rented out a donkey, a woman was supplying grain so successfully that she extended her dwelling and now rents out two rooms. Neither of those enterprises could flourish from the Woreda slum and perhaps the single biggest contribution of the mission to leprosy relief is the series of housing projects that offer those affected by this cruel disease some semblance of normal living.

Finally, the mission is just that, bringing succour to the soul as well as the body. Those men in that first hut, the image of whom will probably remain with me until I die, told me that they knew one day they would have new bodies in Heaven.

It was a grim trip. We were all ill despite taking the utmost care to drink only bottled water. Normally when I am suffering physically, mentally or emotionally my exhortation to myself is "Come on, Widdecombe, this ain't Calvary." This time it was the recollection of that first hut that gave us a sense of proportion. We might not feel hungry but if we did there was no shortage of food, our destination was a clean hotel, we had medicines on tap and money at our disposal. We all agreed we didn't know we were born.

Back in Britain I have become immersed in cards, presents and festive food shopping. As I hang the decorations I pause and remember one pathetic piece of torn tinsel, proudly displayed as a Christmas welcome to us in a dark, wretched hut inhabited by some of the poorest and most seriously disabled people on earth.

Anger, horror and tears will not help but giving will. That is why in 2002 the majority of my winnings from ITV's Fit Club went to this mission. I have supported it from childhood when as a family we collected our pennies, shillings and occasional half-crowns into an L-shaped box. I look forward to the day when I no longer support it because there is no more leprosy and its work is done.

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