13027 Tears of silence

April 19, 2013 § Leave a comment

by Jordi Pla Mellado
with Fontilles
Madhya Pradesh, India, Asia

Tears of Silence is a story that features the daily life of women affected by leprosy in India. Was conducted in urban and rural neighborhoods and homes of those affected and Fontilles supported hospital where they are cured.

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The report

Leprosy is one of the oldest diseases and has a special social dimension. No other disease has forced the victims to leave their families and communities and live as outcasts. For those affected, to overcome the infection is not enough to return to their previous lifestyle. The World Health Organization estimates there are 3 million disabled people in the world because of leprosy. India is the country of the world that has more new cases (127,295 new cases in 2012, of which 47,111 are women). Leprosy is a disease socially and economically inclusive of (1) its disabling effects that lead to limb amputations and blindness, and (2) because of the stigma, which affects both patients and their families. To date there has been little attention to gender issues and projects often have tended to favor men. In fact, leprosy can have a greater impact on women who are the most likely to have to be excluded from family and community. With this report, along with Fontilles, intend to publicize the reality of women’s lives affected by leprosy in India and how are automatically relegated from work or social contexts and end up living in many cases, of begging. “Tears of silence”, so I called this report, the daily talk of these women, who have to struggle not only with the challenge of overcoming the disease, but also against social exclusion involved. Fontilles brings a ray of hope to these women, fighting for the early detection of symptoms, to prevent malformations involved if not treated early. Leprosy in India is a disease that knows no caste, affecting different social classes and forcing those affected to live a life radically different from the one they knew before being affected by the disease. This exclusive reality multiplies in the case of a woman. That is the reason that the article is centered on them.

The author

Jordi Pla Mellado (Valencia 1964). Valencia Photographer specializing in dance and theater and social photography. I have worked with Albena Produccións, Pavana Espectacles, Teatre Escalante, Ananda Dansa, Moma Teatre, Vianants Dansa, Teatre L’Horta, Jácara Teatre, Bambalina Titelles, Theatres of the Generalitat Valenciana, Teatre Micalet, Focus (Barcelona), Olympia Theatre, Mar Gomez Cia de Danza (Barcelona), The Musical Theatre, Theatre Off, etc.. Since 2007 also working in the field of social photography, having collaborated with the NGO Payasospital and especially since 2009 with Fontilles, with whom I have done the following photo reportages and documentaries: Behind the skin: documentary about the 100-year history Fontilles (2009), A Matter of Trust: documentary on microcredit project for people affected by leprosy in Brazil (2010), the Dignidad and Azada: photo essay on African women undergoing post conflict rehabilitation (2010).

The project

It is proposed to rehabilitate leprosy affected women with disabilities that limit their social inclusion and employment and promote a gender policy in the fight against leprosy in India.

The group consisted of women affected by leprosy in the districts of Dhar, Jhabua, Barwani, Khargone, Khandwa and Indore, southwest of the state of Madhya Pradesh, India. Suffer high levels of poverty, illiteracy and inadequate health infrastructure and inaccessible. 98% of leprosy patients are diagnosed and treated with poliquimoterapia in primary care centers, but control of disabilities and their surgical treatment are not attended by the General Health System. It is also among the group of women with a high prevalence hidden, as they try to hide the disease due to social stigma and family pressures. Other factors influencing this exclusion: the existence of tribal communities unreceptive to modern medicine, forests and mountainous areas, extending over an area of 39,000 km2 and hinder access to the target population, and the coexistence of small villas very disseminated.

General Objective: to end gender inequalities among people affected by leprosy in India and break down the stigma and social exclusion suffered by these people.
Specific Objective: Physical rehabilitation of women affected by leprosy reconstructive surgery by their disabilities and strengthening primary care services with a gender approach in six districts of the state of Madhya Pradesh, India.

The entity

Fontilles Association was created in 1902 as part of the process of building the sanatorium for leprosy Fontilles (Alicante) founded in 1909. Fontilles geriatric activity until mid sixties is concentrated in the sanatorium. From the 60, coinciding with the decline of leprosy in Spain, decided to start their work Fontilles international projects leprosy especially in India, the country with the highest number of cases worldwide. From then until 2002 Fontilles focuses its cooperation in the fight against leprosy. From 2002 begins to fight other diseases related to poverty, seeking to contribute to health development of poor populations, with special emphasis on the training of local staff and the strengthening of local health systems. Fontilles a member of the International Federation of NGOs of leprosy and Coordinators NGDO Spanish and Valencian.


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