In August of 2016, just a month prior to my departure to India, I was diagnosed with Ulcerative Colitis; a bowel disease that causes inflammation and sores in the lining of my large intestine. Of the many irritating symptoms of the disease, the one that affects me most is the urgency I feel when I have to use the loo. Though my symptoms are largely in control with medication, I still find myself constantly living in a deep-seeded fear of leaving my safe zone (anywhere a restroom is visibly available). What makes my situation slightly more difficult is living and working in a rural area of Andhra Pradesh in which toilets are not at the most progressive of stages, both in construction or accessibility. Though I can write many a blog post detailing my adventures handling this specific challenge, I choose to focus this entry instead on how it opened the doors to hearing the inspiring story of an incredible lady.
On this particular day, my team of seven and I were headed to a small tribal area in the outskirts of Madanapalle to initiate a conversation about the importance of toilet construction and usage. This outing was more unique than others as a special speaker was expected to grace the event, so there was a bit more excitement in the air than usual. This dialogue involves music, art and a gathering of community, and becomes a whole day affair. To garner attention and mobilize a crowd, songs are belted to the beat of a traditional Indian drum, and once a sufficient throng of people has congregated, introductions are given and the indoctrination commences. One of the most impactful aspects of this process is an activity in which my team members and I, with the active participation of the tribal community, create a rough map of the area using colored powders, and trace the passage of sewage and human excrements throughout their living space, highlighting the necessity to adopt sanitary habits and end open defecation practices.
Everything was going well for me that morning — I ate a hearty breakfast, took my medication, filled up my water bottle, and most importantly, made a necessary visit to the lavatory before our journey. Right in the middle of the activity however, my tummy started to rumble. Let me pause here and note that this disease is as mentally taxing as it is physical — one of the most helpful things to do is mitigate stress. So it didn’t help that as this feeling began creeping up on me, a shiver of panic slithered its way in, and my gastrointestinal system signaled to me that the time to find a washroom was nearing. After frantically scanning the area and finding nothing in the near vicinity, I sheepishly walked over to my boss to ask if she knew anyone that could help me, and in the corner of my eye, I saw a woman sitting under the shade of a tree across the crowd of people waving for me to walk towards her.
I walked with a careful and awkward jaunt towards the tiny middle-aged woman who was sitting and watching from afar. With a large smile on her face, and no further explanation from me, she signaled for me to walk with her. After getting far enough that we could hear each other speak, she laughed and admitted that she had been watching me and could recognize my look from the moment my smile melted away in the distance. She explained that she lived a short distance away and could offer me a very clean bathroom, and knowing my grumbling gut couldn’t wait much longer, hearing those words instantly put my mind at ease. To ensure further serenity, it was essential to continue distracting myself, so I asked her to tell me her story.
She was born in a rural slum as the youngest of three girls. Being born into the Dalit caste, she faced discrimination both in her village and school. She did not grow up having a bathroom, and it was habit that women only went to the restroom once a day, very early in the morning, around 4 or 5AM when it was dark out so nobody could see them. They took a small pot of water and walked to a hill a few kilometers away, finished their business, and never went for the rest of the day. They stayed at home and controlled their bowel movements by eating and drinking little to nothing to avoid the embarrassment of walking out to defecate. Their shower was a small area 3 ft high outside their hut built by stacking pillars of rocks and covering the remaining holes with old cloth. She showered 2-3 days a week because she couldn’t shower past 6AM for fear of people walking by and watching.
She was 13 when she reached menarche. Sanitation practices were not spoken about or taught so she followed what she saw her mother and sisters do. She used cloth from old saris, petticoats, and loins as padding. Out of fear and humiliation, she washed her cloth when she was alone in a dark corner where nobody would notice. If she wasn’t careful, and an elder in the community laid eyes on her during her time of the month, they would curse at her. She was told to sit outside in a designated area, where she was instructed to not speak, look, eat, or partake in any activities. A black dot placed on her forehead warned everyone that she shouldn’t be acknowledged.
Due to unhygienic living habits, she suffered from headaches, nausea, anemia, asthma, and excruciating pain in her uterus that she could never pinpoint the cause of. Doctors were too far away and the local primary health clinic prescribed medications that only relieved her pain temporarily. After failing 10th grade, she married at the age of 17.
In four years, she was impregnated four times. First a son through a cesarean, as the doctor suggested she was not strong enough to deliver naturally. Her second was aborted due to heavy bleeding and her third did not survive due to blood canals that couldn’t support the baby’s heart. Her fourth was another successful cesarean. In those four years, she became increasingly weak, fatigued and developed infections for weeks at a time. Her mother-in-law would accuse her of complaining too much if she asked to be taken to a better clinic and her husband refused to pay for further testing.
She traveled in secret on her own to several hospitals and clinics, and received a final consultation, that given the severity of her condition, it would be best to remove her uterus. She was distraught. She went home to tell her family the news, and their reaction was brutal. She was tormented and tossed out, for if she could no longer provide offspring, she was useless in their eyes. With the support of her parents and community, she underwent a hysterectomy and has been healthy and more stable, but her world has transformed in other ways. Having learned so much from her personal journey and wanting to become more involved in the community, she went back to school and passed 10th class, became a cluster resource person, a leader in the women’s community health team, an Anganawaadi Aaya, and is now an Anganwaadi teacher. She refers women with gynecological problems to hospitals, teaching young women about menstrual hygiene management, and showing community members the benefits of building, using, and maintaining a toilet. She speaks about the many ways she and other women who have undergone hysterectomy’s are now suffering, such as extreme fatigue, early menopause, harassment from community and family members, unfaithful partners, hormone imbalance, and stress incontinence. She uses these factors to motivate women to take care of themselves properly, and seek help from medical professionals immediately, not wanting them to suffer in the same ways she has.
It was about halfway through her story that we arrived at a small hut in a nearby village and I thankfully tended to the request of my distressed belly and happily started walking back to hear the rest of her tale. It was only when we arrived back at our location that I realized the beautiful woman who had captured my attention this entire time was indeed the special guest speaker that my team had been looking forward to seeing the whole week. Malleswari’s story is an inspiration not only because of the personal transformation she underwent, but because of her courage, strength, and resilience through it all. As I leave my hostel every day praying that I won’t have to endure a painful battle with my stomach, I count my blessings that the one time I did, I didn’t need to carry a pot of water to a nearby hill, and am encouraged to do my part in making hygiene poverty a thing of the past.