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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Politics

TW: ableism, inaccessibility, police

“Why are you defending Owen Jones?” he asked, with a look of derision. (Well, it may not have been those exact words, but it was to that effect.)

I was at the Tolpuddle Martyrs Festival, and one of my fellow campers was knocking Owen Jones: “He doesn’t turn up to events to back up the things he writes about, so he clearly doesn’t really care”.

What had I said?

Again, I can’t remember my exact words (probably wouldn’t be able to even without ME-related poor memory), but I can summarise it: not turning up to things doesn’t mean that someone doesn’t care, and valuing physical presence over and above other forms of participation is a very ableist thing to do, especially when so many demos, actions, etc are as inaccessible as they are today. (So not so much defending Owen Jones, as critiquing the argument made against him, really…)

Often, people dress it up as anti-intellectualism. (Or, rather, this is the side which I’ve encountered most often, because of what I myself can and cannot do.) That by being physically active we are taking fights “to the people” more than by writing. But it just creates a different elite – or, rather, reinforces an existing one – abled people. And, lest we forget, some of “the people” are disabled.

(Ironically, some of the same people who accuse me of not doing my bit to combat the reinforcement of intellectual elites seem to be the same people who think I need to have read a lot of specific, sometimes quite long texts in order to have a well-thought-out and well-articulated political stance. (My eye muscles are some of my worst-affected muscles, so on lots of days I cannot read for more than half an hour without losing the ability to focus properly. Therefore headaches. And not actually being able to see the words on the page properly. That too.))

Less subtle is the term “armchair activist”, given to those, who tweet or whatever about things rather than, you know, actually turning up. I can only reiterate: the presumption that people only care if they are somewhere physically is ableist. Probably this is most obviously ableist against people with physical disabilities, but a lot of political activities can also put strain on our psychological resources, so it discriminates against plenty of people on grounds of mental health too.

(Also, as soon as police are involved, we shouldn’t forget the specific ways in which they systematically endanger and do violence (physical and psychological) to other groups – or people read as being in those groups – such as black people, or trans people.)

So, next time you even think about criticising someone for not caring because they weren’t somewhere physically, think about whether you’ve actually made any effort to make your event accessible, at all. I get that it’s difficult to make all events accessible to all people, but there are things you can do to make sure there are ways people can be involved. Making sure you use a variety of different tactics (and being open from the start that you will be doing so), for instance, is one. This way, people know that you want them to be part of a campaign, if they want to be. It’s no use saying “well, you should have turned up to tell us”. It’s not just no use: it’s totally ridiculous. Asking someone to sacrifice their health or wellbeing may well mean there is absolutely no way they can get to your next event/action. And don’t get me started on telling people they need to come to a meeting somewhere with stairs in order to have a conversation about wheelchair accessibility. I wish that was a joke.

(On this note, one simple and quick thing you can do which will immediately make any meetings you have more accessible: don’t have meetings in pubs. Not only are they very rarely wheelchair accessible, they are also very crowded and noisy places, which can be a problem for lots of different reasons. And they’re not only inaccessible on the grounds of disability: meeting in pubs normally excludes people with children from attending, and lots of addicts will also avoid them.)

This sign displayed at the entrance to a Sunderland pub at the beginning of the year is just the tip of the iceberg. Source: http://www.bbc.co.uk/news/uk-england-tyne-28547104.

This sign displayed at the entrance to a Sunderland pub at the beginning of the year is just the tip of the iceberg. Source: http://www.bbc.co.uk/news/uk-england-tyne-28547104.

Respect what disabled people do do. We do blogs, and youtube channels, and all sorts; and this often of our own accord, without the support of the organisations which are there propping up lots of abled people’s protests. My other project is making audiobooks of political texts, because I do think the way we rely on printed text is really problematic and ableist. Still mulling over how best to create some audio-zines, but I had an interesting chat with someone about that the other week, so watch this space – maybe it’ll be a collaboration! (Bearing in mind I have been well enough to commit half an hour a week to the audiobook project, you might be watching for a long time. But that’s the thing. You need to respect that that half an hour, and that the time I find every couple of months to blog, is actually quite a significant commitment for someone with very limited energy, and plenty of pain when I overstep my boundaries. Boundaries which sometimes move unexpectedly.) This is NOT “armchair activism”. This is not less valuable than being physically present. And if you say you believe in fighting for equality, but degrade my political activity this way – indeed, degrade my existence, since the very BEING of being disabled is itself a political act, in a world which demands that you are abled – then you’re going to have a hard time persuading me that that statement of belief was anything apart from hypocrisy and lie.

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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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Don’t Talk to Me: Student Union Election Season

The cover of the University of Bristol Students' Union 2014 Elections information booklet - a possible site  to signpost readers to where to pick up "Don't  talk to me" badges. (OK, probably not on the front page.) Source: http://issuu.com/u.b.u/docs/ubu_elections?e=1099577/7126110#search.

The cover of the University of Bristol Students’ Union 2014 Elections information booklet – a possible site to signpost readers to where to pick up “Don’t talk to me” badges. (OK, probably not on the front page.) Source: http://issuu.com/u.b.u/docs/ubu_elections?e=1099577/7126110#search.

The coming week sees Students’ Union officer elections take place at my current university, the University of Bristol. I’m therefore taking the opportunity to blog about one aspect of the student election week experience – interactions with candidates and campaign teams on campus. Specifically, I will be commenting on why, in the main, I expect that I will not be stopping to talk to them.

It’s not that I want to be rude – in fact, I distinctly do not want to be rude.* Nor is it that I don’t care. I hope that my writing about this makes that clear to any candidate, at Bristol or elsewhere, who reads this.

It’s simply that I can’t expect to converse with campaigners and still have the energy to complete the work or other tasks I need to on that day. As a rule, I’ve found I can be active for 5 or 6 hours a day. These hours need to include my work, but also day-to-day activities, down to those as minor as brushing my teeth. They’re all energy drains. I also timetable in regular breaks.

So stopping to talk to campaigners, while it may not seem like a long conversation to them, can take up a significant proportion of my energy, especially on a bad day. And if I’m caught between activities, especially ones I can’t adjust times for, such as research seminars or meetings, then it eats into my break time. As such, unless you happen to be a candidate who I’m hoping to collar and suggest working together at some point, I will probably be walking on past; possibly waving/saying hi if I know you.

I cannot be alone in this. Some others, like me, may walk on by because they need to conserve their energy and ensure they also give themselves time to break and relax. Being approached by someone in the street can also be a source of anxiety. So there are just two for instances.

At some point – maybe next year if I’m managing well – I’d like to mount a campaign about this, distributing “Don’t talk to me” badges. These would be available to pick up – without the need to talk to anyone – from around the university. My hope is that this would make campaigning weeks more accessible for people want to avoid being approached. I think it would also help those campaigning, as it would reduce the frequency of instances when they felt rudely ignored.**

As a concluding thought: campaigners, do not assume that everyone who does not engage with you is simply being rude.We should not have to feel guilty simply for acts of self-care.

*Well, maybe I’d want to be rude to candidates who I thought had disgusting politics, but that’s not the point right now!

** A friend raised concerns that people would take advantage of these badges, in order to avoid being approached by campaigners for no reason other than apathy. My response was twofold. Firstly, I think making the university campus or precinct more accessible is more important that the potential for the badges to be misused. I would not suggest asking people for reasons why they wanted the badge, as I think this would deter more of the people the campaign hopes to help than those who wished to abuse it – it simply replaces one stressful situation with another. Secondly, thought can be given of where to advertise that these badges are available. For instance, I think a key place to advertise would be on websites and literature about the elections, which those who didn’t care and simply wanted to avoid contact with campaigners are less likely to see. I don’t think the advertisement could be limited only to there, but I think with discussion with anyone else who thinks they might use one of these badges – I would – we could establish as a group what locations would be most useful and work from there.

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Study Spaces

The Graduate School of Arts and Humanities - colloquially known as the "Grad Pad" - as shown of the University of Bristol website. (Source: http://www.bristol.ac.uk/arts/gradschool/)

The Graduate School of Arts and Humanities – colloquially known as the “Grad Pad” – as shown of the University of Bristol website. (Source: http://www.bristol.ac.uk/arts/gradschool/)

Content warning: discussion of institutional ableism.

As a research student, one of the most immediate changes I’m having to make in response to ME is my study habits. I mean this not only in terms of the time I spend studying, but also where I do so. As such, I’m going to use this blog post to comment on the accessibility of study spaces. The matter of what problems I’ve spotted is doubtless affected by what my own access needs are, but I have tried to talk about some other issues I’ve noticed too.

At present, a shelf worth of library books which I took out at the beginning of the academic year, before my problems with fatigue began, is Bristol’s Graduate School of Arts and Humanities, on Woodland Road. As the year goes on, I have increasingly been spending my research hours elsewhere.

Why?: Because the Graduate School of Arts and Humanities building is impressively inaccessible.* There is neither a lift, nor a flat access study space. While I can reach the study rooms on other floors, I would rather avoid the exertion of unnecessary stair climbing, in order to conserve my energy for more unavoidable tasks and work. And it’s not just a question of climbing up once to get to the room and once to leave. The study rooms allocated to research students are on the top floor. The common room is on the ground floor. Every time I want to have a snack or a cup of tea, or take a break without potentially distracting my work mates, I need to descend two flights of stairs, then ascend again to get back to work. I also need to go to another floor to get to a toilet. This is despite there being a kitchen and toilet on the top floor. But these are “staff only”, and apparently they do get aggy if they find a student in the kitchen. So any energy saved by using that kitchen is potentially then lost via the stressful situation of either having to explain my condition to a randomer, or (and potentially also following an explanation) being told off like a school kid, just because I used a kitchen.**

On the subject of toilets, the one on the ground floor is designated as “disabled”. My ass. This toilet has one of the heaviest doors I have ever encountered – and it’s not one which has the option of pressing a button to open. The door can be pushed to go through it in both directions. Except sometimes it can’t. Last year, I found a pile of crates used for moving catering stuff left right in front of it. If you pushed the door to get out, you could just about fit a person through the gap. If you were using crutches or – heaven forbid – a wheelchair, then could you get out?

Nope.

I told the staff about this, and they said they’d sort it out that day. They didn’t. The next time I was in, which I think was a couple of days later, those crates were still there. A friend and I moved them ourselves.

But hey, if you were stuck in the toilet because of these crates you could always pull the emergency cord, right?

Wrong. The emergency cord has been cut off at the top.

Of course, this is all assuming we’ve got into the building in the first place. Because, as I said earlier, there is no flat access. Scouting round the entrance, I can see where there is meant to be a ramp: it should go up half way on the other side of a short wall, then turn into the garden, and continue up to the entrance level from there. (That is, the main entrance, which is only open during office hours. The out of hours entrance is down some stairs, because clearly everyone who needs flat access is only active between nine and five.)

I can see _where there is meant to be_ a ramp. I’ve studied at Bristol for a year and a half now, and ever since I can remember that ramp has been blocked. The other side of the short wall, there are builders’ fences, with piles of junk inside them, blocking the entire width of the ramp.

Why don’t I just use another study space, you ask? Well, I do. I spend most of my research hours at home now. There were reasons why I liked to work in the Graduate School. I liked the sense of community in a building used by arts and humanities postgrads: it got me through my Masters dissertation, moreover making me friends in the process. The provision of kitchen space meant I could save money by bringing my own tea, soup, etc. (Indeed, this would still save me money and energy compared to other study spaces, where I’d have to find a nearby café to buy stuff from, or invest in a large and heavy collection of thermoses whereas with a kitchen I could use small, light takeaway boxes – saving energy again.) Also, all of the toilets in the Graduate School building are gender neutral (they are all single stall), which saves me the stress associated with odd looks in gendered toilets, or when seen hovering awkwardly outside the disabled loo in the library, waiting for it to be free.

In any case, why should I use another study space? The University of Bristol pride themselves on their provision of a building set aside for the postgrads of the Arts, Humanities, and Modern Languages faculties. They argue – and quite rightly – that the community fostered by this shared working space is invaluable to our research. As, indeed, it is to our social lives, as the work which makes up PhDs in these subjects is almost entirely solitary. Except that students such as myself are denied this.

The Graduate School’s website claims that the building’s interior “has been specifically designed and adapted to cater for postgraduate students’ needs”.*** As such, 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.

The university is wrong. We know it, our supervisors know it, and our friends who can access the Grad school know it. The situation at present is simply not good enough.

*This is entirely contra to the claims of the out of date website, which reads “The ground floor, with full disabled access, holds the main reception, a large teaching room, and a common room for postgraduate students to relax and chat.”  -http://www.bristol.ac.uk/arts/gradschool/about/facilities/

**It’s perhaps also worth noticing that staff frequently use the student kitchen!

*** http://www.bristol.ac.uk/arts/gradschool/about/facilities/

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