Away from the hustle and bustle of the city, on the border between Delhi and Haryana, lies Lampur village. Here, inside a Delhi government-run old age home, 60-year-old Narmada, is sitting alone on a chair. Unlike other residents of the home moving around her, Narmada stays glued to her spot.
Narmada cannot walk. But that is not her only problem. The woman, originally from Sunder Nagri in East Delhi, has also lost control over her bowel movements. The condition, termed as bowel incontinence, makes things especially difficult for her. The inability to walk not only makes every trip to the loo a challenging task but the stigma associated with incontinence ensures every trip is an exercise in shame and embarrassment.
Talking about it, Narmada asks me, “When I can’t walk, I will have to use diapers, no?” But despite the diaper, she says she isn’t cared for anywhere except at the old age home. Here, fellow residents and workers do help out. That, however, has not helped her overcome the shame. It continues to haunt her outside the somewhat more inclusive atmosphere of the home.
“Nobody says no here (to helping me) but you feel (ashamed) yourself. I have to go to the room in the corner to use the toilet. I am not able to enter the toilet,” she says. Explaining the difficulties that she faces, she adds, “I am not able to sit in the latrine. I defecate and urinate standing,” she adds. When she tries to sit, her muscles turn cold, she says. “Then when I stand up, I don’t have any bowel control.” She came to this old age home six years ago, after her husband’s death. Due to her age, or perhaps, due to the condition, her children too have stopped caring for her. “Mere bachche awaara hain. Meri dekhbhaal nahi kar rahe hain to awaara hi hain. (My children are irresponsible. If they aren’t supporting me, then I will call them irresponsible, no?),” she asks, visibly upset.
When she visits her elder sister, Narmada says her neighbours mock her, because instead of her own children, her sister’s daughter-in-law helps her when she needs to go to the loo. At the twilight of her life, Narmada has no choice but to battle the stigma and shame all alone.
At the old age home, there are many like Narmada, but unlike her, most don’t want to talk about their condition. Narmada says Kamla, a resident who was sleeping at the time, also has the same condition.
“No matter how many times you change her clothes, she always has some faeces on her clothes. She can roam all over but she urinates only when she reaches her bed,” she tells me. Others I speak to, who I’m told use diapers, deny using them vehemently – an indicator of just how embarrassment and shame can cause people from even speaking about their condition.
To some extent, the stigma she faces, may be attributed to those around her not even being aware of what incontinence is and the affect the condition can have on a patient’s life. Nobody in Narmada’s family ever suffered from the problem. It is also what prevents most from seeking help. Narmada doesn’t even know what she suffers from is a medical condition, forget seeking a cure for it. She has resigned to dependence on diapers for the rest of her life. If only her family and those surrounding her hadn’t shamed her, there could have been hope – for her to be cured and to lead a happier, more dignified life. Six years in the old age home, away from the comfort of a family, has robbed Narmada of even that hope.