Disabled in Dhading

In writing these blog posts, I really have two goals. One is to talk about the earthquake, and how the earthquake (and the aid efforts after the earthquake) affected the people I got to know in Dhading district. The other, though, is simply to introduce you, my reader, to some of the people that I met, to help give you a sense of what it means to live in rural Nepal, and to help contextualize how people experienced this enormous disruption.

Today, I want to talk about two of the families that I met, as a way of talking about vulnerability, rural marginalization, and relationships. Each has a family member suffering from debilitating physical and psychological conditions that change the dynamics of the family, and create the need for alternate forms of relationship and care, which inflected the ways the families sorted out the realities of their post-earthquake lives.

The first family that I want to discuss is part of the extended family of Bishnu, the man who invited us to come in the first place. Bishnu’s grandmother lives with two of her daughters and several assorted grandchildren.


Their house had stood on the main path through Ward 6 between Bishnu’s house and Sailo Dai’s house, and after the earthquake, the family had adapted their animal shelter, which is right next to the path, to serve as their house (meaning that every time I walked past I was basically walking within inches of their open windows). They had modified the animal shed, whose roof had previously been about level with the path (because of the way the land drops away), building a bamboo and reclaimed-wood second floor over top the existing stone structure, which turned out to be just barely above eye level of people walking down the path. By adding some tin walls and a roof, they had been able to create a very serviceable, if not very private, shelter.

I had come to trade pleasantries with the family every time I walked past, primarily the grandmother and her daughter; it’s conventional for everyone to talk to everyone else when out walking in rural Nepal, and so chatting with passersby is a major occupation of that particular household, since they have such proximity to the path. Having had perhaps dozens of small conversations with Bishnu’s grandmother and aunt, it took me a few days to realize that there was also another adult woman who was part of the household, one who didn’t live upstairs with the other family members.


This daughter lived downstairs, in the three-walled stone structure that had been built for the family’s farm animals, and continued to house their water buffalo. The buffalo was allocated the left half of the ‘room,’ the daughter had a bed frame and a small table to the right. I have no idea if the daughter had been living with the water buffalo before the earthquake or not; I’m sure, though, that she had lived separately in some way from the rest of the family.

The daughter had two different conditions that led to her isolation. She suffered from a fistula, a condition where urine from the bladder continually and uncontrollably leaks into the vagina and out of her body. This condition leads to constant odor and embarrassment for sufferers, and can only be corrected through surgery. The fistula was the reason the Bishnu’s grandmother gave for why her daughter had to stay outside of the normal house: since she leaves urine anywhere she sits or stands, the family prefers for her not to enter the rest of the family’s living spaces.

In addition to the fistula, however, the daughter also had psychiatric problems. She spoke very little, but has an unnervingly piercing stare, one that seemed to look right through my soul and way on behind me down the road. Her family indicated that she was prone both to hysterics and to something that sounded like catatonia.

The family traces both these conditions — physical and mental — to childbirth. The daughter had been married, and had given birth to a child. The labor caused the fistula, and it sounded like the psychological condition set in (or dramatically deepened) in the months after the birth. Perhaps postpartum psychosis? I don’t know. In any event, the husband’s family kept the child, but sent its ‘broken’ mother back to her birth family.

A woman rejected from a marriage is always a problem and a liability in Nepal, regardless of whether or not she has any other issues. In traditional Nepal, property passes through men, and women marry out. When almost every family farms, women have to marry into property-holding families in order to have any opportunity to meaningfully participate in economic and social life. She contributes her house holding skills, her farm labor, and her reproductive capacities, and in exchange, her marital family is supposed to ensure her welfare and comfort for the rest of her life. If a marriage doesn’t work, however, the woman is left vulnerable: her birth family may or may not have roles for her to play or resources with which to support her, and they may or may not wish to take responsibility for supporting someone who ‘left’ the family.

In this particular case, then, the daughter was in some respects quite fortunate that her birth family would agree to house and feed her. She is not in a position to cook or farm for the family, and so she is consuming limited resources without contributing much in return. She is a little unnerving to be around, and people seem to give her wide berth. Her mother, though, strokes her hair and buys her psychiatric medication from the pharmacy in Khahare bazaar. She apologizes to strangers that her daughter has to stay with a water buffalo, and lovingly bullies her daughter to eat. I’m guessing that if she had the money, she would send her daughter to Kathmandu to have surgery for the fistula, which might allow them all to stay in one house together.

The family seems to be doing its best, given a tragic and uncomfortable situation. They care as best they can for someone whose body, mind, and marriage have all fallen apart, and they help me tell a joke to get a genuine smile:


This family feels resolute and loving, but on a deep level tragic and broken — quite different from another family, their neighbors up the hill.

I met this second family a few days after I had arrived in Ward 6, a married couple plus his mother and sister, and the couple’s children. This family is, if anything, more compromised than Bishnu’s grandmother’s household. The husband’s sister has some facial features that suggest a genetic condition, his mother is blind and deaf. (He explained how frantic he was trying to find her after the earthquake to make sure she was alright; the front edifice and porch of their house had survived, but the whole back half of the house had collapsed, and it took a few minutes searching through the settling dust to find someone who couldn’t hear or see you looking for her.)


But most strikingly, the couple’s son is profoundly disabled. He was twelve years old when I met him, but the size of perhaps a seven year old. He was completely non-verbal and unable to walk; he could sit by himself, clap, and grunt, but not grasp with his fingers, and it was unclear how much language he might understand. He was a child that, if born in the United States, would have had a high-tech wheelchair, nine intervention specialists, a special bed, a regimen of exercises and stimulation activities. In rural Nepal, he has a woven straw mat, the strong arms of his relatives, the sun in the courtyard — and his mother.

His mother loves her son more intensely than almost anything I have ever seen. She is effervescent, incandescent with her affection for this boy. She holds him in her lap, she coos over him, she wipes his drool, and melts when he smiles. When I want to take a family picture, she wants a portrait just of him, and so she she tries to hide herself as she holds him up.



She told me ruefully that they had tried taking him to a hospital in Kathmandu, and that maybe she should have left him there with the doctors so that they could take care of him. But she missed him so much that she took him back so that he could stay at her side. So every day, she committed to feed him, dress him, make sure he changed position regularly so he wouldn’t get sores, talk to him, kiss him, and sleep with him in her bed. She also, after the earthquake, would rush to carry him away from the house every time there was an aftershock.

She was the most caring, child-centered mother I think I’ve ever met — one who took her child on his own terms, and delighted in everything he could be or do, without any apparent regard for all the ways his life would not be what she might have expected.


I spent a lot of time thinking about the daughter under the house and the son who is the light of his mother’s life. I think what struck me so much in meeting these families was my own sense of helplessness in the face of their family members’ profound non-normalcy. In my world, people who are non-neurotypical or whose bodies are radically uncooperative belong in the hands of experts. They should be helped by “people who know what they’re doing” — doctors and physiotherapists and psychiatrists and nurses who would be able to diagnose, label, medicate, design therapy regimens, and organize complicated equipment.

In Nepal, though, there simply aren’t experts or therapies or equipment. If the experts exist, they are all the way in the capital — a full day’s bus ride away — and treatment from them is out of financial reach for most people. What’s on hand is a local pharmacy, some local knowledge of ayurveda and herbs, and families who make it up as they go along, taking care of their vulnerable members as best as they are able.

Certainly, if these two disabled people had been in the United States, there would have had more options for taking care of their physical needs. But would they have necessarily been any better loved, any better cared for? A woman with miscellaneous psychosis might actually be more ostracized from her community in America, where family bonds are weaker, and lives are much more defined on one’s ability to hold down a job. A boy who can’t walk or talk might have been institutionalized — or worse, might have been diagnosed in utero and never born to begin with.

It is part of the discourse of “aid” and “development” that American (/Western) ways are always best, and that other ways of being in the world are worse the more they are unlike our ways. Our technologies, our medicines, our conveniences are thought to be definitionally better. But I think what matters far more, regardless of whether you have easy access to education and electricity, or whether you farm rice in the Himalayas, is the relationships you have with the people around you. And relationships, regardless of where you live, can range anywhere from “underdeveloped” to everything you could ever ask for.