TW: Suicide ideation, Images of hair loss, Images of medication
Collecting my hair falling in batches around me was something I slowly came to accept as a daily ritual, as was the case with the dozens of pills when I could afford the prescriptions. I have been suffering from a chronic neurological condition and its fluctuations are debilitating, even when I look ‘fine’ on the outside. Some of the ways I experience my condition include muscle fatigue, joints locking suddenly, lack of coordination, memory gaps, week-long migraines while constantly in pain, disorientation and brain fog; in short, a body on permanent false alarm mode and attacking itself.
I’ve been also severely depressed with relapses since my early twenties in a constant post-traumatic downward spiral, which coincided with twelve years in academia. Eventually, it became difficult to tell which condition was triggering the other. My mental state and physicality were tangled into a messy knot that was at times too unbearable to break through. I had come to the brink of quitting many times, quitting whatever career ahead, quitting my PhD, quitting any remaining faith and effort, quitting life.
Images of medications to manage the condition.
For most of my time in academia, my daily routine involved crawling from bed to toilet and vice versa, weeping, sleeping, slowly working towards some academic deadline, and looking up cheap assisted suicide options. Flare-ups and rebounds made me doubt constantly whether my desired path of academic research was compatible with my own body/mind and the limits to what it could do. That included the haunting thought of disappointing those who trusted me and believed in my work and ideas, those generously putting their faith in me. Also, I couldn’t help but wonder about the implications of having to use most of the already limited resources which were given to me just to balance what was weighing me down, rather than investing in the work itself. Was that ethical in the grand scheme of things, if someone without this added baggage could be in my place instead, someone who could be twice as productive? My chosen path looked more like a labyrinth, one of internalised guilt and self-sabotaging which was inevitably only making matters worse.
Dealing with this mess while in academia was more than just an issue of having to manage myself in a new setting and find coping strategies, the infamous ‘resilience’. One of the most difficult issues for me was actually externalising my struggle. What are the appropriate language and channels to talk about ‘those things’? Sooner or later a time would come when I’d eventually have to spill the beans.
Opening up when you are vulnerable can be a tricky thing, particularly when the power dynamics are not in your favour. What does it mean to openly expose your vulnerability to the gaze of others in the context of an academic institution, being emotional and volatile in a setting that was not exactly designed with people’s wrecked lives in mind? At least in my mind, everybody else seemed to be high functioning, despite the difficult conditions in the sector. Why was I too weak to handle this, and was I embarrassingly victimising myself instead of just putting my head down and somehow getting on with it? Most importantly, what would it mean to come out as the weak link in this setting? Of course, there was also the issue of accessing support, which was challenging in itself.
No ‘Magic Tree’ of Support
A quick search on the academic support pages for postgraduate researchers (PGRs) in most academic institutions suggests that many services are available for people in my situation which, at first, seems promising. There’s disability support, hardship funds, counselling, wellbeing officers, support services, immigration advice, incident reporting platforms, women’s support referral services; all these things that I needed to access. The system looks risk-proof. It’s reassuring but also suggests albeit implicitly that sooner or later you’re going to crash or, at least, that was my impression.
This was not my first time as a service user. My decade-long experience had equipped me with the knowledge that accessing support, be it medical, financial, or psychological, was never straight-forward but rather a postcode lottery most of the time. The pandemic had only made things worse; waiting times to see a specialist and access pain management was eleven months, nine months for a gynaecologist, while referrals for mental health-related issues were even longer. What help could I possibly access in this case?
There seems to be a robust system of support designed to meet multiple needs in academic institutions. Having been there, I came to realise that if you scratch the surface what you actually find is not exactly comprehensive. What I did encounter was not an ideally prepped system, but rather individuals who were trying their best to use whatever resources available to them (or unavailable). It was mostly their goodwill and ingenuity to go through the various system hoops that kept them going. There were times when these individuals were my only point of contact with the world outside my head. What stayed with me during this time was the experience of encountering these individuals who were trying to somehow make it work:
- The person who doubled-checked that my case wouldn’t fall through the cracks during an upcoming case handover.
- The person who spent several hours exchanging emails to make sure I understood the small print, when my fogged mind couldn’t do Year 2 arithmetic.
- The person who took extra care not to retraumatise, so they readjusted the unnecessary standard paperwork.
- The person who was willing to explore unorthodox solutions for unprecedented situations.
- The person who let a sigh out in frustration at institutional process absurdity.
- The person who became creative when we hit a wall and exhausted all permitted routes.
- The person who discreetly checked on me even when they didn’t have to.
- The person who was comfortable with unproductive, prolonged silences while the clock was ticking for the next appointment.
There’s no job specification setting out these little but impactful comforts, and I was privileged to receive them. While these people were ‘doing their job’, that job seemed to have more to do with tackling the limits of the system of support and internal problem-solving, rather than just the mere processing of supporting itself. Dehumanisation in the cloak of institutional ‘pragmatism’ was potentially waiting at every corner as legitimate grounds to suitably dismiss claims for the otherwise obvious needs. This brought to mind Sara Ahmed’s figuration of the brick wall (Ahmed, S. (2021) Complaint!. Durham: Duke University Press) that these people often had to confront, when employees are asked to achieve the impossible, to magically patch with their bare hands one of the thorniest issues of institutional academia; the one which involved the cognitive paradox of refusing standard support which was embedded in the act of charitably offering it later. I had the strong feeling that these people were institutionally placed in charge of this agonising dissection of seeding when, in principle, it is the same institutional source that refuses to take this need into account in its design in the first place. How far can someone’s solidarity, empathy, and goodwill take us though, until we call it out for what it is: a systemic problem?
Support in academia can also come in other ways, less obvious and outside systemic affordances. For me, to a great extent, it came from peers, supervisors, collaborators, academic friends, the people who often found themselves in similar situations, those attuned to troubling realities, or those who were tasked with a million responsibilities but zero resources while struggling to stay above water themselves. The support offered in this case was as much an act of political solidarity, affectivity, and collective care, as it was invisible, uncredited, or undervalued.
It was and is a silent resistance to the indifference or the accountability deficit prominent in institutional academia. For me, it came in the form of ‘I’m here if you need to talk’ emails, a care box with heart-shaped messages, a spare bed in someone’s house, after-hours wellbeing checks on WhatsApp, stocks of painkillers, a blanket that took days to make, a stock of those heavy flow tampons I couldn’t buy. This type of support can address very effectively those extra worries of the daily life of someone who is mentally and physically disabled, someone who’s locked out of workplaces and accommodation facilities. Yet, it doesn’t originate from or rely on the system in place; in fact, the very reason it exists is precisely because of the systemic shortcomings of institutional academia. It also points out the silent function of those having to do the mental, physical and emotional labour in order to make the impossible possible. But is this sustainable?
During my prolonged breakdown, I was privileged enough to have these few peers and mentors who showed genuine concern and the willingness to help as much as they could to weed out some of the “nettles” along the way. However, not everyone has access to empathetic ears, and not all of the time. Most importantly, for those who are also subject to multiple systemic violences as members of maligned communities, the challenges are more uneven. What’s also problematic is that this voluntary help is the result of someone having to take time out of their already exhausting, overstretched days, their family or free time, their headspace, their own mental health care, their limited, precarious living resources. And while these acts of solidarity and care are what is currently holding me and a lot of others in similar situations afloat, it also exposes how flawed this system is.
At the same time, it feels somewhat ironic to see the institutional co-optation of junior academic achievements, progress, publications, and labour visibly celebrated while, at the same time, rendering invisible the conditions in which they originated. Something´s got to give and this lack of visibility is not just soul-wrecking and demotivating, it´s violent. Being in academia is certainly a choice, however, it ceases to be one once the transparency of how this works is muddled. Can we address the proverbial elephant in the room and play with cards open, or at least call it a cult with restricted access and come clean about false claims of inclusivity?
The Implied Researcher
Precarity and destitution, lack of access to basic resources but, also, lack of a normalised language to share a complaint against these conditions aren’t taken into account, particularly when it comes to perceptions of how a researcher/academic is understood. Who is this perceived abstraction? Who’s the ‘implied’ researcher/academic of the institutional narrative? Do they need to eat, require sleep, and need shelter or are they some sort of metaphysical self-sustained being; are they a material body or a function?
Particularly for those of us still fresh to navigating the academic system as partially or badly funded postgraduate researchers, this existential question extends to the ambivalent way in which we relate to the institution, as students with staff duties and staff with student needs, often existing somewhere between infantilisation and overburdening. These questions become more complicated when there’s additional factors contributing to the mental and physical challenges of living up to the expectations in contexts of extreme intersectional violences and marginalisation.
I feel it is important to address the issues that come up when unpacking the definition. For a ‘function’ which, for a lot of academics I know including myself, research is so intrinsically, existentially even, related to aspects of their identity and the urge to change the world around them, there is a lot of compartmentalisation going on in its institutional understanding. I often recall my hesitation when filling in institutional paperwork and admin forms, as to whether or not I qualified as that implied coherent research subject; the one who can seamlessly control their physicality, mental clarity and their memory, sense accuracy, movement, surroundings, vulnerability of self and others, the one who is operating in ideal conditions, in ideal realities, in mythical bubbles of optimal results. One that’s not homeless, disabled, or broke. I’ve felt many times that the version of the academic I’m dragging along inside me is at complete odds with that model.
The Shrinking Disabled Community in Academia
I’m reading today that, unsurprisingly, 52% of PhD students in the UK are thinking of quitting academia, amidst the disproportional income compared to the rising living expenses; this is more than half of the future of the sector. Based on my own experience and witnessing, there’s no doubt that a considerable portion of that percentage is disabled, impoverished, mentally broken, and physically exhausted, while also dealing with various other disadvantaging factors operating in communities in crisis. When can we expect the anecdotal experiences and raw statistics to be seen as valid complaints and claims? When can we expect something to be done about it?
My pain, my optimism and despair, my resentment and hope are flooding my experience of academia and spilling into my work and ‘function’; how I feel about being part of this, my sense of academic belonging and discomfort, my longing for change, for improvement of these conditions. If we accept that in many cases this is the raw reality of it, can we make affordances for these raw realities that emerge in increasingly precarious and volatile environments? How can the definition be widened to include the realities that define these emerging subjectivities, as opposed to a unified imaginary version that’s so ridiculously out of sync? How can we then adjust the setting to these pressing needs rather than the other way around? Like a lot of others experiencing the impact of these circumstances, I’m truly hoping for a change before the outcome is irreversible.
Athanasia (Nancy) Francis is a PhD candidate in Hispanic Studies at the department of Languages, Cultures and Film, University of Liverpool, UK. Her work focuses of transnational feminist practices of affect, solidarity, and care, and the dialogue between activist communities and academia. Her work is informed by her experience as a queer disabled feminist activist navigating the UK academy, and as a service user.