My Question to the Participants of this Summit: What do you bring to this Platform?
While I was toying with what to write for this post, for many an idea tossed in my brain, but I needed more time to organize them, I thought I want to know what everyone who is here on the DxSummit is thinking, and it ought to be known to everyone else as well. Of course we are all educated people who have known mental illness from many positions but what is whose explicit role or what expertise they bring here, I am still not clear. This post is actually a request post to everyone else to share their positions and the reasons for being part of this dialogue. Only when we know this about each other can we work towards meaningful convergences and collaborative action.
My post therefore is an invitation to everyone to contribute to this post and make it relevant for everyone else as well. In the absence of a unified intent and direction I notice a lot of posts are just there without any response, whereas a number of ideas are floating which need to be shared further- may be we need to come up with a common plan?
Let me begin with who I am and what I bring to this forum, or where I come from. I wish to make this an indicator about my life, work and current engagements.
Illness and its tangents
In 1992, November, I was given a diagnosis of Bipolar Disorder when I was 20, and for the next 18 years I was on a see-saw of psychiatric medication, along with many a degree in college and further, and becoming a small-time classical musician; though the mess was huge, with many co-morbid conditions and huge personal and professional setbacks. I deliberately use the word ‘small time’ to indicate my musical career, because my depressions were so big that they did not permit me, till yet, a full-fledged career in music, that I was capable of carving for myself. Oh yes! It did get me on the path of searching for solutions via music therapy- and I started study/research in it, on my own, about a decade back. The outcomes of this were mostly newspaper articles and advocacy among different clinical populations, and some pilot studies. The opportunity cost of being in music full time to become a musician, necessarily involves giving up my research/work in mental health, which is something that I am unable to tear myself away from for the present. So therefore I accept only those invitations to perform which come without a big fight, and without me having to make much effort.
In November 2010, I recovered, and mental illness was suddenly a thing of the past. Since then I have no further connection with mainstream medication. However, having overcome my personal adversity, in which I can see the role of many elements including homeopathy, music, dogs, family support and my own study, I got down to studying that academically, analytically. I am still on that road.
One important element in this recovery also came from social constructionism, which drew my attention to language and what role it plays in mediating between health and ‘illness’, and that was a chance encounter. This was over and above my own therapist who was a Jungian, and with whom I shared a relationship of respect since 2003.
After 2010, there were two things I got down to- become an entrepreneur and getting into research. The first of my entrepreneurial adventures was a non-profit, which I could not ‘manage’ except for in my imagination, as I was more interested in finding solutions to problems and not in seeking grants from any quarter or funds for further work.
Being a bit academic, I have always been drawn to inquiry on many counts. Due to illness, long years ago itself, I started seeing the role of music in identity formation and in a transformation of identity. Over time I published a few of my articles in peer- reviewed journals in psychology. I also started looking at the social roots of mental illness in everyone I encountered with a ‘label’. An interest in research brought me into newer ideas of qualitative research, particular the new paradigms of autoethnography and emancipatory research.
I constantly hear and analyze illness narratives of others and hold hands of many, while collaborating on finding more empowering ways of looking at distress, rather than psychiatric classifications. I do not wish to call myself a ‘psychologist’ and/or ‘counselor’, for these positions mostly come backed by degrees. I found myself jolted into the maze of psychological inquiry per force, with/out an option. My own inquiry in psychology spills over to many a side, which may not even be offered in traditional university syllabi- such as transpersonal psychology, analytical psychology, mythology, depth psychology, family studies, and so forth.
Survivor- research is a well honed paradigm in disability research and since I work in research, for now I find this ‘label’ the most appropriate, or at least better than user-survivor.
There are no yardsticks to account for experiential knowledge. But just as a cancer-survivor is considered an authoritative figure to speak on recovery from cancer, so ought a psychiatric-survivor to be; at least that much an authority as much as anyone, who has not experienced mental illness, and talks about it from theoretical positions.
Unlike ‘professionals’ who study mental distress in others and then start ‘treating’ them without knowing what is really happening inside them and whether it can be even so neatly encapsulated within pre-set categories, I come from a huge experience of mental distress and having lived a long-life of stigma, suffering and isolation.
I have known the effects of ‘psychosis’ closely and taken the greatest nose-dives into months and years of never-ending depressions. My musical and other life have just been staggering along therefore and sometimes given me the succor to live further, when all other reasons vanished.
So when I encounter others who are experiencing a similar condition, two things happen. Firstly they are very ‘encouraged about themselves’ for then ‘recovery’ also becomes a tangible possibility for some, and secondly, they meet with someone who wants to hear their story in full, and not summarize it or put it into categories which are ready-made. Therefore I am unlike any counselor or psychologist that they have traditionally encountered. So if I put myself in the same category as psychologists and/or counselors I would be doing disservice to myself. It goes without saying that most people know my own background as well.
I see a whole lot of empathetic people here on the DxSummit, who are deeply troubled with the DSM and its politics. However, where I come from, the DSM is not only the ruling deity but also the God which is growing in size, as the powers that be have very convincingly ‘bought’ the scare of the imminent rise of mental illness in the world and they are preparing for greater mental health infrastructure via mainstream psychiatry. In such a scenario not only do we expect a huge allocation toward medication but also possibly toward the training of more personnel who will be fed on the DSM staple, including psychologist etc.
A lone wolf in the wilderness
Yes that is what people like me are- for we are few and far between. We have been on both sides of the fence, and we come from empowered positions therefore. More significantly, we are not just representing our own selves, but a whole lot of others and their experiences too. In other words, I am involved in an act of social representation of a group which has been traditionally represented by others. The mentally distressed people are usually represented by families, psychiatrists, other clinicians, governments, journalists, lawyers and activists. I represent the voices of many people, and my research informants keep increasing as my networks keep on expanding.
To think that one can be dismissive of people who survive serious conditions which debilitate millions is something which society cannot do, and ought not to, for these people may be coming from very insightful perspectives and wisdom gained through life-experience, not books or by studying others only. It is another matter that we have yet to develop a well argued line of reasoning or a well developed vocabulary the way psychiatry has, but perhaps that is the strength we carry- the ability for multiple voices, as distress though seemingly similar, is a many faced phenomenon and may even be culturally specific.
As that lone wolf in the wilderness, I stop at many a campsite that discusses mental health, where people argue about what is ‘ab/normal’ or what is anything…and yet I move on. For though the erudite and the educated can fight tooth and nail about everything, does it really help anyone who suffers in the torment of their soul? How does knowledge percolate further? Can I just remain quiet like hundreds of others who recover or should I shout about it from rooftops (likely to invite another label of course) and tell that recovery is real and it is possible in a world where the alternate propaganda is so well entrenched? I have often wondered about this and been tormented about what my role ought to be.
So therefore this lone wolf gets down to digging the earth, and digging into the stories of others and collating ideas from this and that sides…to make the journey of this recovery systematic, capable of being mapped, and hopefully offering that courage to others all along the way. As part of this exercise, and in trying to analyze the social roots of mental illness, I just got over a year long qualitative study of mental illness narratives of 13 people, many of whom are completely recovered, to see for myself whether and how recovery happens and when it does and why it does not when it does not. That study is currently in its final stages- hope to share the outcomes with this forum in due course.
My research areas are as follows-
- Social sciences based inquiry in mental illness/distress- mostly qualitative research
- Music therapy
- Trying to create a culturally relevant model of collaborative ‘therapy’
- Public mental health
- Music pedagogy
Having been a great failure at my social enterprise, and only doing research due to the support of my family, I have now decided to start the next enterprise which would support my academic interests as well as offer my two-penny bit to the world around in meaningful and empowering ways. This is also what I bring to this online forum.
We would all be happy to hear from you too.