by Shanta Kalyanasundaram
During my November 2017 visit to India, I visited four Chapters in Tamil Nadu, located in the cities of Trichy, Madurai, Thirunelveli and Chennai. The aim was to see the children that SABHA supports and also to talk to the Women’s Groups at each Chapter.
There are 81 Chapters in India. These Chapters that extend over the Southern, Northern, Western, and Eastern regions of the country are governed by a national unifying member organization, Hemophilia Federation of India. Persons with Hemophilia (PwH) depend on HFI for care, education, affordable treatment, physical and social support, as well as economic rehabilitation. This total care package assists PwH improve their quality of life, to live free of pain and without disability. Hemophilia Chapters trace undiagnosed “Persons with Hemophilia (PWH).” They inform and provide accurate information on Hemophilia Care to Persons with Hemophilia, their families and also to the medical profession.
Individual Chapters function to accomplish the mission of HFI. Chapter Leaders are invariably PwH or a parent of a child with Hemophilia. There is also a Leadership Training Program for the Women’s Group of HFI. My understanding of the Women’s Group is that it is made up of mothers of children with Hemophilia. The collective suffering of these women gives rise to their collective strength, determination and resilience in the face of poverty, hardship, abandonment and social ostracism.
Trichy The Trichy Chapter afforded me the opportunity to meet with and talk to all six of the children SABHA sponsors. Their mothers accompanied them and I got to visit with them individually rather than in a group of women from the Chapter. Together with Usha Parthasarathy, the Save One Life Program Coordinator for India, SABHA sponsor, Sindhu Vijayasarathy and the local Chapter leader, I was able to finalize micro grants to two of the mothers.
Madurai The mothers I met at the Madurai Chapter were energetic and enthusiastic. Even with all the major issues they face, I heard laughter and saw smiles. Cultural nuances seem more apparent among the members of this chapter. Many of the fathers were present and fully invested in the care of their children. However, with the stigma of Hemophilia and abandonment, some of the women have huge burdens to shoulder. It was clear that these women knew each other well and supported each other. Tears were visible, yet I sensed optimism too.
Thirunelveli It was interesting and heartwarming to hear that the Thirunelveli Chapter Women’s raised RS.11, 000 ($167) through the sale of handmade bead jewelry. They used Rs.7, 000 ($106) to buy a manual treadle sewing machine for one of the mothers in the group who was going through dire times. This Chapter has much to offer because they have the essential ingredients for success – friendship, empathy and a strong built-in support system.
Chennai The moment I stepped into the meeting room at the Chennai Chapter, I felt the positive energy of fifty very strong and determined women. It was almost palpable! Each woman’s ‘story’ left me feeling humble in the presence of so much individual suffering. At the same time I felt a profound sense of exhilaration at the mutual support they received from each other. There was the distinct sense of strong individuals bolstered by the collective strength of the group. This Chapter has a sense of purpose; the women discussed upcoming field trips, outings, talks by visiting speakers and other activities such as fund raising and babysitting each other’s children. Some of the women showed me their ‘livelihood enhancing projects.’
Hemophilia Chapters play a vital role in providing a place for women to meet and talk about problems and possible solutions. They share knowledge of their individual ‘livelihood enhancing skills.’
This is group therapy at its best, without judgment or favor. Chapter leaders advise, guide and address the needs of the women in the group. They arrange field trips for the children, motivational guest speakers for the women, arts and crafts sessions and cooking classes as well. These activities allow the women to experience a somewhat normal existence, even if it is for a few hours every month or twice a month. Chapter Leaders need to be administrators, mentors, and above all strong shoulders to lean on.
The four Chapter Leaders I met certainly had these qualities in abundance.