I was recently reading an article by Neely Myers titled, A Fragile Recovery in the United States, in the book, Our Most Troubling Madness. The book chapter is a storied account of how the researcher (who is an anthropologist working on her doctoral thesis) engages with the central character of the chapter, a woman she refers to as Meg, as Meg struggles to balance her life shunting between ‘shelters’ for the homeless and other such institutions, as well as comes to construct her mental illness identity as a ‘schizoaffective’. It is a queer, sad sort of a chapter in the beginning, because in receiving the diagnosis the woman is actually happy and relieved- because that makes her eligible for disability benefits. It is sad, touching and a stark reminder of the cruel world we live in , where our infirmities are the reason that society looks at us as worthy of support/charity, and not just because we are human.
It is also painful for me on another count- to read a researcher’s perspective. May be researchers are trained to be aloof from the subjects they study. But is it really possible? (In fact, if I recall now, she says that her brother also suffers from something identical). I am bothered a bit, because I don’t find myself so detached yet- I am actually attached to my research subjects- quite a bit. I don’t mean that I would go ga-ga over them, but i am concerned in their welfare, in wanting to tell them more- from things i study and read about, in case they want to know about recovery. I want to help them, wherever I can. May be I am stupid, or may be this is what survivor-research is all about- about holding others while you have crossed the stream yourself and not forgetting them completely, because in your crossing there is not a personal victory, but a social possibility that resides.
Like I read somewhere, the choice of what we study or research about itself is a bias- there is no objectivity here. We are humans and we choose as researchers what we want to study and how. That inherently has a bias in it, because we want to study what we want to study, not what is imposed on us by an educational institution- we are not following a syllabus, but constructing a pathway to study a phenomenon. Nobody tells us how to study it, nobody lays the path out. You create the path, you lay it down brick by brick and be sure about it, because someday at a later date you have to justify why you took the path, how you took it, what the bricks and mortar of the path are and how it leads you to your research question, or how it contributes to it.
And that brings me to the start of my research on a new platform-
Gathering Data
My research has two parts to it, one of which is to meet people who have been given a diagnosis of psychosis at some time in their lives, and interview them. This is the ‘data’ that I have to gather.
In these past few weeks I met two of my research participants (called informants)- both happened to be women, and by chance, both agreed to come to my home and talk to me. That was a quaint coincidence, which I don’t expect from anyone in future hereafter! And both these interviews happened in the same week- the last week of May. It was quite a thing- one came on a tuesday and the other on the Friday. Oh my goodness! there was so much to listen and write down. Naturally enough they had a lot to share as well- but on the whole it was a great time I had with both. Or let’s say we all had with one another.
The other connector was that both of these ladies were ‘recovered’ – if I may use a silly term. One has recently quit a university teaching assignment and the second is about to start a year long apprenticeship in a place faraway from home, after completing a master’s degree in something. They are both well on their ways in their own professional and personal lives. The latter is still on medication and the former left it years ago. Of course, both had a bipolar diagnosis- one got it in the US, while pursuing her doctoral research there. In other words, both are highly educated as well!
With families…
The other part of the data is meeting the families of the research informants. And I am trying to work that out, by taking appointments with these ladies’ families. The older, who is recovered is not a problem in this matter, because her parents are elderly now, and I can pretty much meet them soon anytime. But the younger one has some issues, having a working mother. When I hear a parent talk, I hear my own parents voice in them sometimes. I hear their fears and their concerns about their children. I so much want to tell them that, ‘look your child can also recover. Recovery is not such a difficult thing that it is reserved for a few.‘ But it takes time to get to that point, where you meet a family in person and let them talk out their fears, their suffering and their concerns. And yet, that happens all the time- not only in research, but even otherwise.
This part of the research design is turning out to be nightmarish. There are so many families that just do not want to talk about mental illness! Right while having people with mental illness diagnosis among them- what is going on in India is strange to say the least. Of course people who are diagnosed ‘ill’ have their own suffering, but what about the fact nobody wants to talk about it in each other’s presence? What is going on here? This is very strange, confusing and flummoxing. If there is a suffering, and it is a collective suffering of the family as a unit, why are people not willing to talk about it?
So, even while I ponder over the phenomenon (yes, it is beginning to look like one) there is an article looming in front of my eyes on the subject and am thinking of putting pen to paper.
But coming back to data collection, I realize also from Myers’ article, how as researchers we start valuing and engaging with our research informants. We want them to be happy, to succeed in their chosen vocations, to do well, to tide over their suffering. At least emancipatory researchers like me want that because our destinies are tied to the fate of society (does it sound too dramatic?!). We want that others would succeed in breaking the shackles that we have broken from the hegemonic clutches of biomedical ideas of human suffering- sold off as psychiatric diagnostic categories.
And in understanding the silence that is part of our cultural landscape, it becomes all the more a reason for me to value and cherish the presence of my research participants, because in their opening their stories to me, they are not only opening their hearts out, but also overcoming a great societal barrier- which they may not even know at present. But they are letting an ‘outsider’ in- someone who does not know their story, now does. And yet, they also understand that this ‘outsider’ is really an ‘insider’- someone who has known the road of suffering only too well herself.
Thank you dear informants. This is a knowledge making project and in you making your contribution we all learn something from our association- not me alone. Be assured of it.
As time rolls by, I will keep adding more blog posts about the data collection part of my work, depending upon time and inclination. Earlier i had planned to write one blog post per person that I met, but somehow it has not materialized till now. Let’s see if I can manage that ahead.
The struggle to find research informants is another story, and I really hope to write it down someday.
