Photo by Colin Summers
Working in an environment where stereotypes, stigmas and pre-conceived notions are rife, and working within a charity whose goal it is to dispel such prejudices, you would think that I, as chief executive of Lepra, would know to leave my own bias at home.
It turns out that on my recent to trip to visit our leprosy programmes in India, along with my malaria tablets, I'd also packed my pre-conceived ideas.
I was visiting the Cuttack Leprosy Hospital and Home, a government facility that Lepra supports to provide high quality reconstructive surgery and rehabilitation for people living with disabilities as a result of leprosy.
This latest visit would be my third to the home and I was not looking forward to it. In my mind I carried the images of the run down facilities I had seen previously, I could envisage the dark and crowded wards and felt for those patients who had little in the way of stimulation during their long stays. These factors contributed to my negative attitude towards going back and my assumption that it would not be a valuable visit.
However, a few hours later while I was travelling back across the Odisha state, I realised that this time I was leaving Cuttack with a renewed sense of hope together with a real understanding of what the patients thought was important too.
What had made this outcome so different to my previous visits was the change in communication we had with the Cuttack patients. By starting a dialogue among those who had experience leprosy themselves and opening up debates around the ideas of causes, treatment and stigmatism whereby they could ask us questions, I was able to gain an insight into their thoughts and feelings on the condition itself.
I could see that the patients had a real thirst for more information about the illness that had affected their lives so drastically but I could also see that, while for me this facility was poorly maintained and offered little activity, to the patients it represented hope. After a long journey of suffering and then months of treatment they weren't interested in complaining about the accommodation, the food or the lack of anything to do. They saw Cuttack as a sign of new beginnings at the end of a long journey, the final step before they could resume their normal lives among families and communities and they were grateful to have reached that point.
But what was it that had caused them this long and painful journey to begin with? It turns out that even they didn't quite know. While the 25 patients could recite the educational materials they had become accustomed to over the years and relay the key messages, it was evident they had a burning desire for more information. For example, some people still struggled to identify what leprosy symptoms were or where the illness originated from.
By identifying this gap in knowledge and seeing the passion the patients had to learn more about the illness as a whole, I was able to see that we, at Lepra, had been missing out on an opportunity to educate. Through further education we could create real leprosy ambassadors in the community, people who could speak from the heart with first-hand experience on what it's like to live with leprosy and overcome it.
Had I listened to the voices that had buzzed away in my mind only a few hours before telling me this would not be a valuable visit, we would not have been able to benefit from the unique perspectives of these patients and make the necessary changes to create valuable leprosy ambassadors.
Going forward, we will now be holding more of these open discussions and debates to tap into the knowledge and the concerns of those with leprosy. This is in the hope that we can better equip them with the information they desire so that they too can educate those around them so that more people are able to detect signs of leprosy at an earlier stage. This is key when it comes to limiting the effects leprosy can have on the individual and within a community.
Unlocking the thoughts and opinions of the inpatients at Cuttack transformed for me what this centre represented. Instead of the dark and gloomy home I had once seen, I now left seeing it as a place of hope and excitement.
The buildings of Cuttack Home and Hospital might leave much to be desired but hearing the courage and confidence of the children, women and men we work with makes it truly an inspirational place showing that, as the cliché goes, you should never judge a book by its cover.
World Leprosy Day is January 31st.
Visit www.lepra.org.uk to learn more about Lepra and how you can get involved.Suggest a correction