From Kashmir Dispatch: “In a Universe of One”
I first met Irfana, a 20-year-old deaf and mute young woman and her mother, at the OPD of the Government Psychiatric Diseases Hospital in Srinagar. The psychiatrist on duty had been treating her for about a year, first for Obsessive Compulsive Disorder (OCD) and more recently, for depression. On this particular visit, he asked Irfana’s mother a few standard questions about her OCD, while Irfana stood behind her, occasionally glancing up shyly at the doctor. In a two-minute span, the psychiatrist had put “CST” (continue same treatment) on both her OCD and depression prescriptions, signed the card, and mother and daughter were on their way. He didn’t seem to think much of the depression, but somehow the diagnosis stuck to me. I was curious whether the depressioncould be linked to the OCD, so I asked the doctor if Irfana’s depression could be related to the fact that she had no language with which to describe, explain, or even understand her OCD. He shrugged and said it was a possibility and went on to the next patient.
I followed Irfana and her mother out of the OPD and introduced myself. Irfana smiled at me, and I also noticed she had a wandering eye – something that only added to her already overdetermined “difference”. Because Irfana’s mother did not speak Urdu and my Kashmiri was far from sufficient, I asked one of the hospital staff to act as a translator. It was then I learned that Irfana had never learned sign language, and that she could only communicate with her mother through rudimentary gestures and sounds. This is how they had been managing for the last 20 years. I asked Irfana’s mother if she had ever gotten her admitted to the School for the Blind and Deaf in Srinagar. She said that Irfana had never been to a school of any kind.
This is how my relationship with Irfana began. I had no clear plan of action, except that I wanted Irfana to find a language or medium through which she could express her suffering. As it turned out, the School for the Blindand Deaf was not willing to accept a student of Irfana’s age. Fortunately, however, I found a speech therapist at SMHS hospital. The therapist agreed to meet Irfana, although she told me that “it was too late for any sort ofspeech therapy”. She also warned me that Irfana’s family would try to exploit me. Feeling uncomfortable in this characterization, I nonetheless set up the appointment.
That day, Irfana, accompanied by her mother, sister, and a cousin brother, met me at the gates of the hospital, and we navigated SMHS’ labyrinthine halls, finally locating the ENT department. After brief introductions, the therapist began scolding Irfana’s mother for not “complying”: for not getting Irfana treated earlier, for not forcing Irfana to wear her hearing aid (which she apparently used to tear off), and also for having unrealistic expectations that her daughter may, one day, speak. For her part, Irfana’s mother also had answers to the therapist’s accusations of negligence. She described how she tried to get Irfana treated when she was young, but it was her own mother-in-law who prevented it: “She would say, ‘Why are you roaming around all day instead of being in the house? It’s inappropriate for a daughter-in-law.” At that time, I was a young daughter-in-law, so I had to give up.” The therapist shook her head and said it was a “sorry excuse.”
Since the therapist refused to treat Irfana’s speech impediment, she suggested instead that we make a chart for Irfana to use, on which we could stick pictures of common kitchen and household items, which Irfana could then point to when she wanted or needed something. My initial instinct was to reject the idea, since I felt that Irfana had probably already figured out how to identify “objects,” rather, that it was her emotions which needed redressing. Nonetheless, at least it was a plan of action. The therapist asked Irfana’s family to purchase a chart paper, pens, and some books with images that they could use to cut out pictures.
On the next visit, Irfana’s family came with a blank chart paper and nothing else. Her brother mumbled something about not having enough time to buy the other supplies. I supposed this might happen and so had brought along some old magazines that could be cut up. That morning, Irfana and I spent hours cutting out pictures of objects and pasting them on the chart. She would giggle when she saw something she recognized and gasp when she saw unfamiliar things, like pictures of women in short skirts in fashion magazines. During the exercise, Irfana had a difficult time with the scissors, often splicing the air instead of the paper in her hand. She would paste images upside-down on the chart, unable to turn the shapes in her hand the correct way. It didn’t matter, of course; when we finished, I saw her admiring the paper happily.
Although it was a satisfying moment for both of us, I still felt that the root issue of language was unaddressed. One of the clinical psychologists with whom I work suggested a rehabilitation center for people with disabilities in Bemina. I set up an appointment with the principal and hoped for the best. When Irfana, her sister, and I visited the center, I found it a cheerful and bright place, with children and adults with disabilities bustling about, engaged in different activities, including physiotherapy, vocational training, speech therapy, and arts & crafts. Dr. Maqbool, the principal, explained that there is an admission fee, but also a bus service which Irfana could avail of since the family lives in downtown Srinagar.
At this point, I told Irfana’s sister to discuss the matter with her family and decide the best course of action. In my head, I felt that it was not my place to try to determine Irfana’s future. However, a few days later, I received a phone call from Irfana’s sister. She told me Irfana had not been attending and asked if I could get them a “discount” at the school. I found the request puzzling: I knew the family to be well off, owning several big departmental shops. My thoughts spiraled downwards: perhaps Irfana’s father was against the idea, having not participated in the process? Perhaps the entire sequence of events was just a performance, not for Irfana’s sake, but for mine? Did I slip into the role of a naïve outsider? Did I cross the line by becoming too “involved,” losing my objectivity along the way? Or perhaps this has nothing to do with me, but was simply too little, too late. I hung up the phone with the sharpest and truest words I could muster: she’s your sister, not mine.
What does it mean to “care” for someone, as a family member or as a researcher? During my one year working on mental health in Kashmir, I have seen many different kinds of relationships between families, patients, and professionals. I have seen relationships that can only be described as familial, where psychiatrists or psychologists have felt deeply connected to their patients, as brothers or fathers. I have also seen a patient in mania tell his father that he is the only who is crazy and who should be locked up. Then there are those parents who have slept on the floor of the Family Ward for 2 months, watching helplessly as their only child, their daughter, struggled with a disease they could not understand. I cannot forget the mother who lifted her pheran to show me she had not changed her clothes, let alone bathed, for those 2 painful months, as if she was sharing her daughter’s pain.
But what kind of “care” was shown to Irfana by her family? This was more difficult for me to understand. Her mother certainly loves her and tried many times to help her. But it seems that this love was overshadowed by other forces within the family. And perhaps I was not innocent in all this either. What kind of “care” did I show to Irfana? Why her case, rather than anyone else’s? Was there a perverse, hidden desire to find out whether the subaltern could really speak?
In a word: yes. Certainly, Irfana represented something fascinating and mysterious, just as she represented something tragic. Nobody had access to her inner thoughts, her subjectivity. It would be impossible to know if she wants to learn to communicate, what she thinks of her condition, what she finds frustrating, what she wishes for, and where she sees herself in the world. But despite her overwhelming silence in this story, Irfana still found ways to act. She was the one who refused to wear her hearing aid. She also succeeded in expressing her frustration but was labeled “depressed.” Even her OCD was a way of speaking, although something that possibly tormented her: a way for her to allow or refuse entry to those who came to their home, a way for her to make her space hers again by washing clothes or cleaning the house. Perhaps this was her language, a way for her to make a mark on her world.
But who was listening, indeed, what would it mean to listen?