“Illness is a complex human puzzle. The more one reflects on it, the more pieces it seems to have and the more interconnected they seem to appear”

-       Havi Carel, Phenomenology of Illness (2016)

In the summer of 2020, I was suffering from my worst depressive episode yet. Back then, of course, I did not know that it was depression. It wasn’t that I was entirely unaware of the neurobiological comorbidities that haunted my being. Panic attacks were a rather common occurrence in my life. Like most people who suffer from undiagnosed anxiety and panic disorders I assumed this is how most people function. I often blamed myself for what was an affliction that was a result of a thousand miniscule, complex processes that I had very little – if any at all – control over. Even when I became aware of the fact that I very likely have an anxiety disorder, my perception of it didn’t change. I thought of it as a beast that could be tamed in a few simple steps, when in fact, it is a combination of social, political, material and neurobiological phenomena far beyond my control, or any individual person’s control for that matter. Collective, holistic action is the only cure for this illness – and to be very honest, for the amelioration of healthcare in general.

This notion of the need for collective action for the amelioration and understanding of healthcare is nothing new. An entire area in discipline of sociology of illness and healthcare has developed around this idea. What has been lacking however, is the perspectives of the people suffering from these illnesses about the socio-politics of these illnesses. In Phenomenology of Illness Havi Carel associates this general lack of value attached to lived experience of an ill person from a personal perspective to Miranda Fricker’s concept of epistemic injustice. According to Carel (2016),

            “[The] set of reactions to illness accounts and patient reports constitutes what philosopher Miranda Fricker calls epistemic injustice; a form of injustice that is uniquely epistemic, i.e. is done to the speaker in their capacity as knower. Epistemic injustice is caused by biases and negative stereotypes about illness that can lead interlocutors to treat ill persons’ reports with unwarranted disbelief or dismissiveness. We suggest that such treatment amounts to epistemic injustice, and examine the nature of such injustice in the context of illness.”

First person accounts of illness, even when written by academicians or activists are seen more as memoirs or autofiction than objective studies with scientific value. As a result, we miss out on the most foundational perspective in creating a comprehensive theory of illness – the one of the persons suffering from it. This gets even worse when the illness is neurobiological as sanist prejudice makes it impossible for people with mental illnesses have their own accounts of their illness being taken seriously, often, even by the medical professionals supposed to be treating them.

My aim in writing this serialized essay is to locate the harm caused by the mental illness from the perspective of a person who is mentally ill. Any illness or disability exists outside of the body of the host as much, if not more, inside of it. That is to say, locating mental illness in the body requires us to locate it with respect to the body. Both inside and outside. I attempt to do this by looking at the hurt and pain caused by neurobiological disorders on one’s physical form i.e. bodily pain, the emotional hurt and pain caused by the isolation resulting from the illness that causes inability to form relationships and community, and the material loss and harm as a result of inability to sustain livelihood under late capitalism.

The ultimate aim of this series however, is not just “locating” mental illness. It is to locate mental illness so as to examine one of my most firm beliefs about neurobiological illnesses and disabilities – that mental well-being for all is not possible without multifaceted revolutionary action. I also draw upon J. Logan Smilges’s methodology of ‘crip negativity’ in order to try and establish how it is possible for us to tackle the injustice caused by neurobiological illness and disability by using negative feelings associated with disability and mental illness – in this case specifically, pain. According to Smilges,

“a crip negative methodology zooms out to capture the stratified formation of the conditions that surround disability, alongside those that regulate or withhold the recognition of some people’s illnesses, traumas, and impairments as disabilities. That is, crip negativity adopts a scalar perspective to show both the norms underpinning the category of disability and the norms preventing the category’s democratization.”

The methodology I follow here is greatly inspired by Smilges. Here, I, as a person with mental illness place myself on a co-ordinate system and then by locating the co-ordinates of pain or hurt on this co-ordinate system, draw certain conclusions relating to the need for more inclusive, dynamic and proactive revolutionary actions in order to ensure mental wellbeing in the society. In his poem “gar mujhe iss kaa yaqeen ho” Faiz counts the number of things that he would do to if he was sure that the mental agony of his beloved friend would be healed if he did them. At the end of the Nazm, Faiz confidently states how the cure to this affliction is not in anything he could do or with anyone but with the agonized friend themself. This is where I disagree with faiz. He ends the Nazm saying that the cure of this affliction is with no one but “tere siwa, tere siwa, tere siwa” (but you, but you, but you)I’d modify this line to “humare siwa, humare Siwa, humare siwa”(but us, but us, but us). What I am trying to get at, is the conclusion that there is no cure to this affliction but collective action. And I hope in the course of writing this series, this belief of mine is further vindicated as it has already been through my lived experience.