I have tried so many times to articulate the reasons why this blog fell silent; to explain why the energies expended over the year were not expended in the direction of maintaining this space for us all.
All attempts have felt confused, or like special pleading, or just not worth sharing with a community already under so much pressure not only to survive, but to try and eke out functionality, let alone success. I feel I owe it to you, because we are in this together, and there are things I would not have survived had it not been for the readers and community that responded so warmly to this blog.
There are added complications, of course. It is sometimes much easier to talk about one’s experiences when you don’t expect people to listen. That people began to listen was a great thing, but it added to the pressure of speaking out, of being recognised as speaking out, and of the potential costs that might befall any one of us who is thought to criticise too loudly in public the institutions that are paying our rent and putting food on the table. If, of course, we are so lucky.
I have tried to account for where the year went. In truth, I’m not sure myself. There are some things I know but which I would now rather not remember. Thinking back through what has been the first year of a second attempt at doing a PhD while disabled is uncomfortable because it resembles an itinerary of opportunities to negotiate, educate, demand, and cajole.
The standard narrative holds that what I have been negotiating with is my own body, or with the PhD project itself. Disabled bodies are meant to need to overcome themselves to do the things that others do, even if, in the case of PhDs, this is a minority of others. I cannot deny that I have engaged in prolonged bodily negotiations, willing my body to find the energy and the immunity to continue doing something, anything, during the weeks and months where it seems to prefer that I do nothing rather than the substantial something of doctoral research. Nor can I deny the negotiations with this seedling idea that I signed up to turn into a project worthy of a stamp of doctoral approval.
Yet this narrative serves to misdirect our attention away from the primary site of negotiation, namely, the PhD-conferring institutions that invite us through their doors with promises of robust support and inclusive environments that unfortunately for so many of us, do not quite live up to what is promised. As the social model of disability reminds us, what disabled bodies must overcome is, so often, the world itself: a world that does not construct itself so as to include us, or includes us only on the condition that we make inquiry after inquiry to establish the extent of our inclusion.
I have joked for at least the last six months that if I or anyone else wanted to know where my energies were spent this past year, they ought just to look at the sent box of my emails.
There were the emails that discussed the challenges I confronted in previous institutional incarnations, which contained reasonable wishes that things not be so difficult this time around; the emails sent chasing Disability Needs Assessments that disappeared into the aether long after their supposed deadlines, and whose drafts were returned ostensibly not having paid any heed to previous communications sent detailing the specific needs arising from the particular conjunction of the lived reality of my diagnoses and my research project.
There were the emails sent to conference or event organisers outing myself as disabled in an attempt to get information about whether mobility-aid users were able to get into the room at all, whether those with cognitive dysfunction and energy impairment would be supported with recordings or rest spaces, or even just nearby disabled parking.
There were the emails asking for extended deadline after extended deadline, apologising for disrupted plans and excusing unexpected incapacity. I know without looking that these emails contain shades of anxiety, hoping to be met with a willingness to extend concessionary understanding. I do not like looking at these emails because my gut remembers a little too vividly how it felt to write them. Even when understanding is forthcoming, it is hard not to feel like a failure, even if intellectually you know that you are not, or at least probably aren’t, for now, and that preparing the way for such understanding is precisely why all those earlier emails needed to be sent.
There were the emails sent to professional organisations in my field seeking support in the hopeful, naive project of creating better professional circumstances so that I might not have to send so many of these bastard emails, messages that contained inquiries into what the subject was already doing to create improved climates or better practices so that disabled people might be able to consider it a viable profession. Finishing a doctorate might change one’s professional standing in academia, but its transformative powers don’t extend to magically rendering institutions more accessible. Responses to these particular emails were mixed. My subject has made immense strides in increasing the number of women in the upper levels of the discipline, but these pathways are not, as yet, particularly accessible to us women whose strides depend on wheels or sticks, or time to rest, or signs available in multiple formats. Even though not all replies were disappointing, these exchanges have, in the end, caused me the most disappointment. In the main, they reveal that to make such strides I and others like me may have to build pathways we can access ourselves. I know, for example, that because this account does not name my discipline, my discipline will take it less seriously than accounts that do, because it does not see itself as having a distinctive problem with underrepresentation or exclusion of disabled bodies. I am still unclear why a problem must be distinctive in order to be a problem.
These were the run-of-the-mill emails, ones that I suspect will have been sent by many like me. There were other emails too, that I am less certain will represent shared experiences. Emails that were sent trying to persuade a supervisor to continue being involved with a project; emails received that gave notice that no, no one else was available within the university to provide supervision, and so a change of institution would be needed, even though such a change would result in a further proliferation of emails, since as a disabled student this meant a wholesale change of disability support, by whom, and according to which procedures. Even if change was for the best, I can count the cost in subject fields and read receipts.
Of course, other things have happened. There are nicer emails, emails of at least one abstract accepted to at least one conference, emails of support from senior academics, including my now-supervisory team and members of my new department. I know that it may seem like this account focuses on the negative at the expense of these positive exchanges. The difficulty is that the volume of emails that represent tiresome negotiations is overwhelming, especially so from a space where one’s body exists in a perpetual state of overwhelm.
Things are improving, although not without – surprise – having sent another barrage of emails this term alone to achieve this. My strategy is developing over time. Most recently I adopted what I somewhat dramatically called a “scorched earth” approach, emailing five or seven senior people involved with my project – my supervisors, head of department, regional funding council director, school disability liaison, and so on – to show them the energy that is being spent negotiating and arranging access which all of us agree ought to be spent instead on the PhD, asking that I be extended the professional courtesy of proactive implementation of access measures, at best, and at worst, that I not have to send email after to email chasing down information about what is possible and when. It worked, I think. The penny is finally dropping. But I know that even those who are well-situated to know how important access is and how bad access provision can be are not always necessarily familiar with what it is to negotiate access as a PhD student. It’s not this bad for everyone, for sure. But it is this bad for some of us. And really, this bad isn’t good enough.
This, then, is the story of the year that PhDisabled lost. I don’t feel comfortable saying much more, but I feel it is important to give an account of where we have been, however abstract or sketchy the account may be. I just hope that those who read this who know me and who have been supportive understand that this account by no means erases their support but, similarly, their support does not erase the difficulties I and others like me meet in trying to undertake these projects in these institutional settings.
The lesson I have learned from the year has been that it was easier or, more strongly perhaps, only possible, to create and maintain energy around a space like this – a space simultaneously of revelation, pain, injustice, and solidarity – when I was not myself engaged in the day-to-day negotiations of securing access for my own PhD. It is both ironic and unfortunate that being a disabled PhD student has prevented me from talking about being a disabled PhD student, and in supporting others to do so.
I have felt guilty about this for as long as it has been the case. But guilt creates anxiety, and both cost energy, and energy is precisely what I lack, so I have had to learn to set these feelings aside so as to just get on with the things that need to be done.
Always, in the back of my mind, I have known that this blog, this conversation, is also something that needs to be done. I am working on figuring out how to make that happen. I am sorry that I have not worked that out so far. I am grateful to those who have stepped into the gap*. And I am proud of us for continuing not only to be, but to do, in spaces that demand so much of us over and above the mundane demands of an already challenging endeavour.
There are a great many stories still to be shared, and a lot of conversations we still need to have.
* If someone would like to collate a list of other folks and avenues for talking about disability, chronic illness and mental illness in higher education, especially for postgraduate research students and early career researchers, please do. I would love to, but I need to lie down now, and then get back to trying to nudge my PhD back on track.