I Quit

I’ve been bullied out of my PhD.

In March 2014 I blogged about the inaccessibility of study spaces at the University of Bristol. I concluded that:

the extreme inaccessibility of the Graduate School of Arts and Humanities building tells me that my University does not think myself and other students with access needs are deserving members of the academic community. It implies that our thoughts and ideas are not worth sharing with other students. Indeed, it potentially implies that they think we lack the skills needed in order to pursue postgraduate study.

Oh to have been proved wrong!

I’ve used every official opportunity possible to pass on these comments to the graduate school management. I was not met with any useful response. Rather, I was asked “Are you well enough to be doing this?”

The most positive response I ever got was a promise of feedback from the facilities team about precisely why there are no lifts and no plans to install lifts in the bulk of university building. This feedback never materialised. As far as I know, the management never even brought it up with facilities. They refuse to even consider installing lifts as (management claim) it would be too much money and too much trouble. How about this trouble it causes us not to have lifts? I never said this would be solved immediately, but if we never get started it will never be solved.

Even small requests like being allowed to use a kitchen on the same floor as study rooms which is usually reserved for staff have been ignored and rejected, whether expressed through disability services or by other means. It is simply pathetic.

And the attitudes from staff – well, the question “Are you well enough to be doing this?” quoted above says a lot. There’s been a total refusal to listen to my clear and reasonable appraisals and suggestions of how the research environment can be made more accessible for me. As a result of both the physical barriers and these attitudes, the environment has been made extremely unhealthy for me, so I decided to take time off for the sake of my health, giving the university time to get its act together, rather than the time and energy I was supposed to be spending on research (and indeed paying for) being taken up and me never finishing in time because of all the extra balls to juggle. I sent in the suspension request early January 2015.

The graduate school management refused my request. This despite it being backed up by my head of department. (She had already requested and had a meeting with me to discuss it. When I said that having this extra hoop was problematic she accepted that criticism and endeavoured from then on to make the process of suspending easier for me, which I see as a constructive response.) I received an email grossly misrepresenting the detailed and clear reasoning I had given for the suspension, demanding further meetings, and threatening to kick me off my course if I did not comply. I responded with calm corrections to the inaccuracies, as I thought were these meetings to happen – and I had reluctantly said I would attend – it was important that myself and the other attendees started on the same page. (Among those other attendees were my supervisors. The management had morphed all of my problems on the supervisor-supervisee relationship, in a way which if anything would damage that very relationship.)

I set to arranging support from my Students’ Union, and informed other attendees that I would have an SU representative with me at the meetings.

It so happened that (as happens with meetings with lots of participants) we were not all available at the same time. I eventually received a passive-aggressive email informing me that we would not be able to meet until late April. The implication being that I should not have other commitments, maybe even that I can’t actually be disabled if I can have commitments.

On the day of the meeting, I received an email from my rep saying he was ill. As such, I cancelled the meeting, to be rearranged for another time. Bearing in mind the tone of our previous correspondences and the threats that had been made to my research, I was careful to note that this was in line with Union laws, requiring the university to postpone if a rep is not available.

I received a somewhat slimy reply, mocking me for my inclusion of the legal reference, and claiming that I was missing a meeting which had been organised for my own benefit – a totally different representation of what was going on to all previous. I read this as obfuscating, trying to trip me up and making it look like I was making things hard for myself. As such, I ignored it and went on holiday as I’d planned.

After I returned – so, early May – I found another email. Once again, this threatened to kick me out of the university. This time, the Graduate School management claimed that I had been absent without permission. This despite the fact that I had applied for a suspension – and suspensions can be backdated. As such this email made it clear to me that as well as flouting equalities law, the management were willing to flout their own processes if it suited them. (The adding of more and more hoops to the suspension process already showed this, but I think this accusation of unauthorised absence redoubled it.) Furthermore, it referred to my union rep in quotation marks – as my “representative” – as if I made him up as an excuse not to attend. It was abundantly clear that they did not take the situation seriously. Any small hope I had that I might make some useful progress for myself or other disabled students through university processes – the suspension process, the complaints process – was lost.

This is not the end. I still plan to hold the university to account. This blog is one step in doing so. I have been subjected to a campaign of discrimination. Those in positions of power have refused to grant me the reasonable adjustments required of them by law. When I politely pressed the matter I was roundly ignored or rejected, and questioned as if it is not right of me to be in the university as a disabled person. Then when I requested through the proper official channels time off, with clear and small pointers how the university could make itself less inaccessible on my return, the management took the opportunity to push me out. They’ve not even done it above board, but through adding to the already toxic atmosphere with threats and outright bullying.

I always said I wouldn’t go quietly; I may have jumped before I was pushed, but I’m still making noise.

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Disability on Screen: The Theory of Everything

This film is inspiration porn.

Let me elaborate:

Perhaps most responsible for my assessment is the film’s ending: the speech (in answer to the third question from a conference floor I think) and dream sequence imply a sort of transcendence, suggesting a message of “Look what this disabled guy can do. Look what he can overcome. We can do anything if we put our minds to it.”

This is really problematic. By moulding the story into one of individual transcendence of disability, the film erases the systematic discrimination we as disabled people encounter, and even at times the primary impacts of our disabilities.

Actually, I thought this was a particular shame for this specific film. With the ending removed, or handled differently the film could potentially have gone some way in transmitting a more helpful message in showing the extent to which Hawking has succeeded because he has been supported, by professionals, family, friends, academic colleagues and institutions.* The ending downplays the value of this support, individualising Hawking’s success into a “the only disability is a bad attitude” type narrative, thus ridding abled people of any responsibility to change their ways in order to make life more accessible.**

I wish I had the support Hawking received and continues to receive. (I don’t mean that in the sense of needing exactly the same things, but wishing that people believed in me and what I do enough to accept – hell, even celebrate – how I do it, rather than tell me that the way I work isn’t good enough.) Some may argue that Hawking deserves support more because his intellect is so extraordinary. But if myself and others are not properly supported, no one will know what we could have achieved.

(And think about what the suggestion that only some disabled people deserve the support of society could mean – are some of us of less value as people?)

So, overall, using disabled lives to provide entertainment and inspiration for abled people, without abled people having to face a responsibility to make the world less ableist. In short disabled lives are commodified, and sold in such a way as to make abled people feel good. Inspiration porn.

* This isn’t to do Hawking down: this support is part of a network of interdependencies, not a simple two-pole, one-way thing. It’s been noted by contemporaries of Hawking from his earlier years at Cambridge that some of his collaborators on some of his work (e.g. a student of his, someone he shared an office with) simply do not feature in the film. For sure, the film does not to cover all years of Hawking’s life and career, but at least one had been part of his friendship group as a research student. The friendship group features in the film, but this individual does not. Probably some behind the scenes politics here. In any case, the example of collaborative work demonstrates nicely how support and enrichment go both ways. Whether in a factual or fictionalised form, this interdependency could have been explored in the film.

** “The only disability is a bad attitude” – see what I mean about denying the impact of disabilities?! And clearly, when I’m angry about inaccessibility, me being angry is the problem – me having a bad attitude – not systematic ableism.

Quote from Stella Young next to photograph of here in motorised wheelchair with knitting. Quote reads "That quote, ‘the only disability in life is a bad attitude’, the reason that's bullshit is ... No amount of smiling at a flight of stairs has ever made it turn into a ramp. No amount of standing in the middle of a bookshelf and radiating a positive attitude is going to turn all those books into braille."

Quote from Stella Young next to photograph of here in motorised wheelchair with knitting. Quote reads “That quote, ‘the only disability in life is a bad attitude’, the reason that’s bullshit is … No amount of smiling at a flight of stairs has ever made it turn into a ramp. No amount of standing in the middle of a bookshelf and radiating a positive attitude is going to turn all those books into braille.”

Expansions in response to other articles emerging in the wake of the film’s UK release:

We wouldn’t accept actors blacking up, so why applaud ‘cripping up’?, Frances Ryan in the Guardianhttp://www.theguardian.com/commentisfree/2015/jan/13/eddie-redmayne-golden-globe-stephen-hawking-disabled-actors-characters?CMP=fb_gu: There is a potential problem here of assuming someone’s abledness. The problems encountered when one passes as abled differ to those when one’s disability is or becomes apparent, and the article is in some sense primarily concerned with the latter; in some sense as the equation of disability with its appearance – or, rather, a distilling of an idea of that appearance by an abled person’s eye – is another problem in itself. Regardless, the observations here intertwine with mine: a narrative of transcendence and the-only-disability-is-a-bad-attitude-ness rids abled people of the responsibility to challenge ableism in word and deed. If the only disability is a bad attitude, then clearly disabled actors are chronically underemployed because they’re grumpy and troublesome, not because of systematic discrimination right? (Also, in this example, the success of disabled actors wouldn’t be nearly as inspirational if abled people actually took steps to overcome ableism and cast disabled actors. And losing yet another source of inspiration – well, that would be tragic!)

Stephen Hawking would not be Stephen Hawking if he had been born with his disability, Alex Taylor in the New Statesmanhttp://www.newstatesman.com/politics/2015/01/stephen-hawking-would-not-be-stephen-hawking-if-he-had-been-born-his-disability: This reminded me that the observations I’ve made also apply before tertiary education. Others share my experience of being shut out of institutions of learning by refusals to make these spaces accessible to them, but have encountered these from a younger age. With a different approach to education these people could have been as successful as me or Hawking, or even more.

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Work: a Response for Every Time Someone Asked “Anything Else?”

It’s probably not news for a lot of people I know (specifically those from the academic community that I have been on the edges of) that academic researchers are expected to juggle a lot of balls. The main project (in the case of myself and contemporaries, the PhD), any side projects, conferences and conference papers, writing journal articles, editing journal articles, teaching, any other jobs we have to remain financially solvent, applications for more jobs or funding… the list goes on.

What might be more surprising is the extent to which we, as PhD students, whilst sometimes bemoaning about how we have no social life, are complicit is policing our contemporaries’s success or failure in meeting these expectations.

“What have you been working on?” is a fairly common and innocent opening line is a postgraduate researcher dialogue. I don’t see this question as a problem; the problem comes in the responses to answers given to this first question. Most obviously, it arises in a follow-up question: “What else?” or “Anything else” or something of that ilk. It is these questions which prop up expectations which one could argue are unreasonable of anyone, but could more specifically identify as ableist, as well as discriminatory against anyone with caring responsibilities: anyone who has a rival claim on their time which cannot be avoided. I – and others – simply do not have the energy (or time) to have an answer to the “Anything else?” question.
To add insult to injury, identifying these unavoidable claims of time and energy is identified by contemporaries as “having a life apart from academic work”, as a luxury which – woe is them – they can’t afford. Yes, my having to take time to rest due to chronic illness has been described as if it’s a luxury.
Even if this last step is not taken, this attitude from PhD students is worryingly reminiscent of the broader pressure e.g. from research assessment exercises to publish a larger quantity of “research outputs” regardless of circumstance.
By this reckoning, even if I’m not seen as luxuriating when I rest, I am seen as not working (hard enough). As someone who previously had the actual luxury of being relatively able to come somewhere close to academic expectations, the realisation of how I was appraised by colleagues (and myself, since it takes time to shed a years-learnt value) was troubling. I’ve come up with the following rebuttal.
If work, in the academic context, is measured by the production of “research outputs”, then anything which it is necessary for a person to do in order to produce an output can be considered work. In my case, this includes time to rest: taking time to rest helps me to continue production both short term – in aiding concentration – and long term – in maintaining better health and thereby the ability to produce more. Therefore rest is work.
Rest is also, you say, necessary for fun. But, in a capitalist society, in which fun must be paid for in some way or another, work is necessary for fun. So rest being necessary for fun need not mean it is not work.
Furthermore, my maintaining of better health is beneficial to society in saving on medical bills. There’s another way it could be thought of as work. Thus, people who are unable to get a job due to health reasons are in a sense working by doing what is best for their health. I guess this line of thought might be more useful in integrating the argument above with ones about caring responsibilities.

With these points in mind, I hope it’s clear that it’s unreasonable and, frankly, ableist to say or even imply that myself and others in comparable situations are “not working hard”.
I should make note that the very idea that for something to be of value it must me “work” is problematic in itself. What I’ve argued for above is by no means a picture of how I think the world should be; it is more an attempt to unpack the problems in a certain series of questions in the hopes that this unpacking helps those of us in (or kindof-in) the academic community to make that community a less ableist place.

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Setbacks in Health and Cutbacks in Healthcare Provision

It’s got harder for me to fit blogging in to my weekly regime. When your active hours of the day are already limited, what might seem like a minor further reduction of activity in terms of hours to others becomes pretty major. And that’s what’s happened: I’ve had to reduce my active hours per day once again, from six to five.

And no, that’s not “normal for a student”: I mean active hours, not work hours. These hours have to include my eating, my showering, etc – all the things that lots of people take for granted. They also include any social time I deign myself worthy as having. And I do deign myself worthy of social time, because however few hours I can do things, I deserve a life which is more than work and basic bodily maintenance.

The balance is precarious. I prioritise self-care (and I include a certain level of social contact within this, in some attempt to allay depressive tendencies), but find that the amount of time I require for this care, when combined with unavoidable other time commitments, like finding a place to live, results in weeks on end in which I produce no new work.

If my health has worsened, you ask, why don’t I take some time out of my PhD to build myself back up again?

Believe me, I’ve considered it. I already took one suspension in December and January when my fatigue was considered post-viral, hoping to recover. And with a chronic illness which lasts indefinitely, I have also considered whether pursuing the academic path is appropriate at all and if I’d be better dropping out altogether.

The thing is, if I was to drop out, I would be in no better a situation. In fact, I would probably be in a worse one. Because all my (disability-related) support is based at the university. Based on what I know from other attending these ME service clinics, even when the date of my first appointment with the local – and I’m lucky, because my closest ME service actually is local – service finally arrives, my contact with them, especially any one-on-one support, will be minimal compared to the weekly meetings with a mentor I have thanks to Disabled Students’ Allowance (DSA).

These meetings give me time to voice the frustrations – with my body and with other people – which build up between them, as well as to find practical solutions for any problems arising in a timely manner. Without exaggerating, these meetings are the reason I am still at university, even if you wouldn’t believe it from the amount of work I (don’t) produce. And so it scares me that funds for DSA are being cut. But we should remember that the reason I’m still in university is that I’m scared of the current situation outside. Other funds available to disabled people such the Independent Living Fund (ILF) are also being stripped away. Sure, I’m not eligible for the ILF, but people in my community are, and it scares me that their survival is being put on the line, and with no alternative being offered.

And we don’t just want a like-for-like alternative. Better, we want a radical expansion of health and social care. Then, on a personal level, my choice to stay at university would be just that: a choice, and not a necessary act simply for self-preservation.

I’m not trying to argue for this purely for my own benefit. But I couldn’t match other people’s efforts at presenting the general arguments with the amount of brain fog and headache I have now, and suspect I won’t have another chance to expand upon it for some time. A friend has written on the matter far more eloquently than I would manage over at http://livingwhiledisabled.wordpress.com/2014/06/08/save-dsa-the-ilf-the-nhs-the-dla-criteria-esa-without-cutting-it-funding-for-social-care-and-all-other-community-support/, for instance.

Setbacks are frustrating. (Househunting is also frustrating.) Screen cap from 1963 film version of Shostakovich's Cheryomushki, directed by Gerbert Rappaport.

Setbacks are frustrating.
(Househunting is also frustrating.)
Screen cap from 1963 film version of Shostakovich’s Cheryomushki, directed by Gerbert Rappaport.

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