Since launching this project just over a week ago, almost by accident, the single most common response we have received is this:
“Thank you for showing me that I am not alone.”
“Alone” is a small word laden heavy with meaning. A brief scan of synonyms for “alone” include words like “solo”, “unaccompanied”, “detached”, “solitary”. Other synonyms grab you between the shoulder-blades more strongly, words like “isolated”, “abandoned”, “deserted” and “forsaken”. Still others, like “unaided” or “unassisted”, may ring truer for the PhD student negotiating the twin-demands of their research with the daily machinations of dealing with disability or chronic illness.
Doing a PhD with a chronic illness or disability can seem like the perfect mille-feuille of solitude. Like a many-layered pass the parcel at a child’s birthday party, each layer comes with its own bittersweet gift of isolation.
Doing a PhD can be an isolating experience for anybody. The long hours alone with one’s research, poring through books, trying to cram as much of the world of the research into one’s head to create a map, make sense of it all, processing it so one can even begin to offer something akin to an “original contribution” to the world’s body of knowledge.
The responses from the world at large can constitute another layer of the cake. One may be lucky enough to be surrounded by others who understand the need to keep learning, to keep pushing the boundaries of what can be learned or understood, though many are not. Even for these people, everyone has had the experience where you cannot talk easily about the PhD, or worse, where one feels awkard even mentioning that one is doing a PhD because of the way it seems to trigger other people’s feelings of vulnerability, shame, and inadequacy about their own intellectual capacities (or perhaps more precisely, how the world has taught them to perceive their own intellectual capacities). And then there is uncertainty over the current state of the academic job market, the message that one is overqualified for non-academic jobs even if academia doesn’t currently have a space it wants you to fill. For all the privilege that characterizes academia in general, it is also, in general, a comparatively lonely road.
For the disabled or chronically ill PhD student the layers of isolation and aloneness sit thicker, denser. For all the differences of individual experience, that the experience of disability and chronic illness renders an already isolating endeavour even more so seems to be a source of commonality, of shared frustration and fatigue. It is not always easy or possible to find and engage shared experiences that, at the very least, reveal that you are not the only one in your situation going through what you’re going through. Again, we must stress that particular details of any given experience will absolutely differ, but there are similarities, commonalities, that are determined by the structural response of institutions to disability in its midst.
The reasons for this seem to be many. As someone wise said recently, the very experience of having a disability or chronic illness at all can make one feel alone. There is pressure to be as normal as possible, to fit within the expectations that the world can (often harshly) apply to even the well, the healthy, the “able-bodied”. One cannot always talk about one’s condition because of social stigma. One may be wary of doing so because of the many past voices who, whether through well-meaning or malicious intent taught you that on balance, it’s easier not to talk about it than to navigate through anothers misunderstanding. Others may unduly identify you with your condition, no matter the quality or scope of your work. There are many who frequently use wheelchairs and other mobility aids who refuse to be photographed in them because they are so sick and tired of others seeing the wheels and not the person who uses them as a tool to live a life like any other. Add to this the voices that tell you, in surprising unison, not to disclose, because others merely knowing about your life being as it really, truly is may unfairly disadvantage you in the competition for opportunities that lies ahead. This intersection has the potential to lead to a “perfect storm” of isolation.
And what of the isolation experienced by the PhD student who is housebound? What of the PhD student who finds time and again that reasonable adjustments are not made to render accessible the materials they must use to conduct their research?And what of the subsequent isolation of the PhD student who must indefinitely interrupt or drop out altogether because circumstances at the intersection of their condition and the academy fail to gel to form a sustainable, robust bridge from here to completion?
Another set of reasons seems to connect with access to others who share one’s experience: with access not only to others who know how it feels to work in the way that we must, but to “possibility models” for what can be achieved, and how. For example, how many students know other students with disability or chronic illness at university? How many undergraduates look up into the higher levels of academia and see that progression is possible for them because they know of at least a handful of academics who have theirs or a similar chronic illness or disability and yet have carved out a successful career? How many postgraduate students with disability and chronic illness can name even a handful of scholars who they can even just look at and say, “I know this is possible because it has been done by others before me”, or better, can talk with these people to learn the precious lessons hard-learned by those who’ve been through the same old shit years before? How many students can only find such connectivity with those like them through the media of social networking and the blogosphere, because their home institutions have poor cultures and policies in place when it comes to supporting disabled students and what they will, or may, go on to become, namely disabled or chronically ill academics?
Since launching just over a week ago, this blog has achieved a total of 2,899 views. Our launch article has been viewed 822 times. Our homepage has been viewed 617 times. Our top two posts – both submitted by people who appeared in response to the initial article – have been viewed 510 and 469 times respectively. This blog has hopped and leapt and jumped its way around the internet, powered by the magic that is twitter and the people that use it, to be viewed all over the world. Articles have been submitted, conversations have taken place. As one of our writers put in a postscript to their first post here: communication has happened. Through that communication, resonance occurred. Every person who has written about their experiences negotiating the intersection of disability, chronic illness and the PhD agreed that they were not alone and decided to share their story for others to realise the same.
Know this: you are not alone. You are not the only one dealing with what you’re dealing with. You are not the only one going through what you are going through. You are not the first, and you will not be the last. There are many, many more like you in the world, though one wonders just how many of these people feel just as alone as you do, as we did before we started this project.
You is not just you. It is we. And we are not alone.
Look. We can prove it.
If you have a story, please send it to us. We’d love to hear it. Find out more about who we are and how to contact us us.
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