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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Disability History Month 2: Something Closer to Home

I recently returned to my Grandad’s memoirs and made an interesting discovery. The building my GP surgery is in used to be a hospital. I discovered that this – the Bristol Homeopathic Hospital – was one of the hospitals my Grandad stayed in as a child. Having moved to the city my Mum grew up in, and her parents always lived in (and continue to do so, in the case of my Gran), I periodically come to identify in real life landmarks and places I’d heard of years before. But there’s not been a coincidence as strong as this sharing of the Homeopathic hospital. Not yet, anyway. (Incidentally, I’d be interested to know if anyone can tell me where the school he mentions near Old Market is, this being my part of town.)

So, it being Disability History Month, I thought I’d share the chapter in which my Grandad relays his experience of the place. The book it’s taken from is a self-published job. After a stroke which had a big impact on his mobility, Ray moved into a nursing home. To keep himself occupied, he decided to learn to use a laptop, and used it to type up some of his earlier experiences. Once he’d got to a suitable point to end a volume, he bought some nicer-than-usual paper to print it on, and sent it off to be comb bound.

The following extract recalls his experience as a TB patient. He was left with one leg shorter than the other for the rest of his life, which gave him a distinctive gait. Other than that gait, the disability – chronic pain associated with the stress placed on the joints by this difference in leg length – was invisible. One example of it’s impact: he was ineligible for front line deployment in WW2, so was in the homeguard (which in Bristol could actually be pretty active, as they staffed some of the anti-aircraft guns during the Bristol Blitz). The events described here took place in the years 1928-32.

I’m considering posting another section some time next year, as I’m not happy with the idea of posting solely extracts about disability, since it may suggest we should be approached solely or primarily through our disability, so I’d like to have a more integrative approach. Anyway, without further ado, here is an extract from “Ray’s Story”:

Chapter 2. Incarceration

It was not that the roof fell in but that slowly the tiles fell off and the hole grew larger! I began to dawdle and walk slowly and with increasing difficulty and it was clear that something was wrong. There were numerous visits to consultants and hospitals and I remember clearly the final prognosis. I was suffering from tuberculosis in my right leg, probably from drinking contaminated milk and the man in the white coat said that if they were unable to treat it I would be dead by my twelfth birthday. When you are aged six, you are not that worried by what might happen when your twelve and I had no great concern about this statement although I clearly must have been impressed because I can still remember the room and the occasion, I have no idea how the hospital system worked but although there was no way my family could afford to pay it was quickly arranged that I should go into hospital. The day before, my Mum arranged a special treat; we went to the Queens cinema to see Al Johnson in The Singing Fool, which was the first of the talking movies.

I spent the next four years in various hospitals, firstly the General Hospital in Prewett Street backing onto the docks, then after six months I was moved to the Homeopathic Hospital in Cotham and after a further year, I was sent home for three months to build up my strength. Then into the big stuff, with twelve months at Winford and a final year at Frenchay. I will not spend too much time with the clinical details but the treatment for my condition was not well developed. Nowadays they would treat the disease with a course of BCG, in my day, they relied on fresh air, good food and rest. The dilemma was that it would need an operation before I was mended and that if they operated too soon my bones would grow out of shape. Hence, I was obliged to stay four years. My first stop at the general was very lonely and I found that being forced to stay in bed with no other six year olds around was very unpleasant. This was made worse by the continual diet of milk puddings. Never a day passed without at least one dish of Rice, Tapioca or Semolina Pudding and often with Porridge on the same day. If you took your time eating, it got cold and lumpy but no matter you still had to eat it. If you refused, then it came out again at the next meal. I fought this battle for months, but eventually I gave in and now I can eat almost anything. The one saving grace about the General was that it was situated in the Docks, and there was a lot to see and hear from outside. This was different at my next stop. This was the Homeopathic, where the view from the window was of a blank stonewall. I ought at this stage to say something about the regime. Breakfast at 8 o clock generally porridge and bread and margarine, lunch at 12 30 p.m. cooked meat, onevegetable and potatoes followed by a milk pudding and tea at 5 o’clock, generally bread, margarine and jam and a piece of cake. Sunday, one might have a piece of fruitcake. Sunday was the only visiting time when two visitors were allowed, between the hours of 2 and 4, No one under the age of 15 were allowed. The doctor’s daily round was in the morning and it was vitally important that every bed was perfectly tidy for thevisit therefore no toys were permitted in the mornings. Although provided you made sure the print did not dirty the sheets, you were allowed one comic. One happening for which I am forever grateful is that I learnt to read at a very early age. I truly believe that had I not been able to read, I could never have stood the life. All small boys need a hero to copy and I was no exception, but instead of my Dad I used Harry Wharton and Flying Officer Biggles. We will talk about them again. Going back to the hospital organisation, there were the doctors who kept themselves apart and never seemed to acknowledge the existence of the patients, the Matron who ran the hospital routine and in my experience was always a cruel sadistic monster who invariably controlled the cleaning and nursing staff with a rod of iron but had absolutely no thought for the patients. This is my answer to anyone who thinks it would be a good idea to bing back the Matron. Then there were the State Register Nursing Sisters who seemed to be the people who looked after you, and the nurses and assistants who did the work. They nursed you, washed you, fed you, made your bed and as far as I can remember cleaned the ward. During the first two years I was supposed to remain in bed since they wanted my leg to be rested and to grow. So, there was an intricate system of weights and pulleys that allowed a weight to continually stretch my leg, it had a large shield over it which kept the weight of the blankets off, but meant one always had cold feet!

Excepting for the patients who were critically ill, visiting was limited to the two hours, 2 to 4 on Sunday, with a maximum of two visitors and no children. My Mum always came; I cannot recall any occasion during the four years when she let me down. She generally brought a bag of sweets, a chocolate bar, a small toy from Woolworths and two comics, one was the Hotspur with the adventures of Biggles and his continual dog-fights with the Red Baron and the other with the latest about Greyfriars School and how the boys in the Remove (what ever that may be), got the better of Billy Bunter and Mr. Squelch. This was the vital part of the visit and I read these comics from the date on page 1 to the name of the publisher on the last page. Even then, they were valuable currency to be exchanged for other goods. It is not surprising how vital this weekly visit was and for which I am deeply grateful.

After two years, I was sent home for three months. By then my family had moved again. We had what was called a garden flat in a very large house in Clifton, where my Mum was acting as housekeeper in lieu of rent. I did not enjoy being home. The hospital had insisted that I was not to use my leg and insisted that I walked with crutches and that I wore a very high boot on my good leg so that my leg could not touch the ground. This is somewhat like present-day criminals who are allowed home with a tag on a leg so that there is continual control. This was also the first occasion that I was able to have a school lesson since I went to hospital. Arrangements were made for me to be picked up by a special school ambulance and taken to the special school near Old Market. This was quite an unusual experience in two completely separate classes were being conducted in one room. I have read since of a class of this type in the D.H. Lawrence book, The Rainbow where Ursula teaches a third of a class. Anyway, there were between thirty and forty of us and we were split into two groups, those on the left being under the age of nine and those over on the right. There were two teachers each with their own blackboard and they both spoke simultaneously to their own side. A most confusing day developed, made even worse by the lessons being pitched at the most backward of the pupils. Mostly it was a case of copying off your blackboard and doing the appropriate sum. I do remember doing the work from both the left and right boards, so without any effective schooling I appeared to be picking up a modicum of experience. Three months soon passes and now on to the big stuff.

My new home was the Orthopaedic Hospital at Winford in the care of a Mr Parry, the surgeon. This was a modern hospital with about eight separate wards out in the country. Years later when Geoff had his accident we had to take him there and I remember when we entered the ward and the sight and smell came back to me, I had a moment of utter panic and I wanted to turn and run out. I was put to bed, but now I was anchored to a board. Imagine a padded board that starts at your neck and follows the outline of a shirt taking in the width of your shoulders, narrows slightly at the waist, then splits into two sections at your bum, and then ends just above your knees. Then imagine six metal bars that clamp you onto this board, holding you at your chest, waist and thigh. There is no doubt this was very uncomfortable and demoralising. My way to overcome it was to play a game. I was Biggles and I had been captured and was being tortured, so it was important that I never showed fear and that I was continually seeking to escape. My escape plan included three times a day grasping each of the metal bars and attempting to pull them apart. I was never able to move them, but what it did do was develop my chest and arm muscles and is the reason why I have always been immensely strong. Regardless of my feeling of deprivation, there was now real progress in my treatment. I had my operation and I was declared free of disease. And I could now go on to the final stage of learning to walk.

Before moving on, it might be interesting to mention a couple of points of interest. My chief memory is of the extreme cold of the wards. I mentioned at the beginning that the treatment was mainly fresh air, windows were always wide open and in the winter it often happened that frost or even snow would lie on the beds. The beds were at least six feet apart, which prevented any private conversations. The highlight of the year was Christmas, when the various wards held a competition for the best decorated ward. I remember my ward took the theme Little Miss Muffett and they created a child size Miss Muffett sitting on a large toadstool. They made a huge web out of black cotton, covering one corner of the ward and hanging close to Miss Muffett, a Black spider about nine inches across. This was fine during the daytime, but think what it was like after lights out when the spider was swaying in the breeze. There was also a Christmas tree. A day wsa set aside when the nurses would come around singing Christmas Carols followed by the consultants judging the best decoration and then presents from the tree. It was not like the parties at home but at least it was special.

Then, late in 1931, I moved to Frenchay Sanatorium. After what I had endured during the previous three years, this was a doddle. I was getting better. I was allowed out of bed. There were no encumbrances. I was allowed clothes and shoes. I learnt to walk again. There were still restrictions but I could see a normal life in front of me. I even went to a school each afternoon. Well, it was a sort of school in the hospital grounds. It was a large wooden hut and following the tradition I found in all of the hospitals, there was the maximum exposure to fresh air. In this case. there were no glass windows, just a space with a slight concessionwhen it rained of a blind being available to pull down. I cannor remember being taught anything. The main object was to keep us busy, so they or rather, she, concentrated on craft work. I used to make wicker baskets, trays, and raffia work baskets. I found this very satisfying and I became quite highly skilled. There were frequent sales of our work at the price of the material and my Mum bought two of the workbaskets and used them throughout her life and I believe she still treasured them when they were old and worn out. I even became friendly with the nurses and onje I particularly liked taught me how to made a bed with real hospital corners. Then during 1932 they decided I was cured and my leg was only half an inch short and I could go home.

The following link to a Science Museum page provides a short explanation of the history of TB treatment. The doll pictured at the top, also shown here, is labelled as having been used to explain polio treatment to young patients, but if you click on the link to a more detailed page about it, it says it was used for TB patients too. The shape of the board and straps on this picture are different to those described above, but you get the idea: http://www.sciencemuseum.org.uk/broughttolife/themes/diseases/polio.aspx

Here are some past and present pictures of Hampton House – the Homeopathic Hospital, now the University of Bristol Student Health Service (the GP surgery), UoB Disability Services, UoB Counselling service, and some local NHS services. There seem to be a lot of ante- and postnatal care there, including lots of midwives’ classes.

A photo of a photo one of the receptionists kindly helped me find! If you look closely, you can see some of the patients in their beds have been moved onto the balconies.

A photo of a photo one of the receptionists kindly helped me find! If you look closely, you can see some of the patients in their beds have been moved onto the balconies.

Another historical view across the gardens. Source: https://www.flickr.com/photos/brizzlebornandbred/13084648414/in/photostream/

Another historical view across the gardens. Source: https://www.flickr.com/photos/brizzlebornandbred/13084648414/in/photostream/

The present day entrance to (most of) the building. This is just round the corner from the original entrance. Own photograph, Dec 2014.

The present day entrance to (most of) the building. This is just round the corner from the original entrance. Own photograph, Dec 2014.

Another present day view, through across the stepped levels of the gardens to the building. Own photograph, Dec 2014.

Another present day view, through across the stepped levels of the gardens to the building. Own photograph, Dec 2014.

What remains of the status in the centre of the pond which can be seen in two of the historical photos. Own photograph, Dec 2014.

What remains of the status in the centre of the pond which can be seen in two of the historical photos. Own photograph, Dec 2014.

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Disablity History Month 2014: Disability in Music History

For a discipline dominated by a figure with progressive hearing loss, almost totally deaf by the end of his life, the study of music history is impressively lacking when it comes to thinking about how this and other disabilities affect peoples’ lives and musical experience.*

Beethoven's progressive deafness is widely known.

Beethoven’s progressive deafness is widely known.

“But we do talk about Beethoven’s deafness!” you say.

For sure. But this response is problematic in a number of ways. Firstly, it tokenises Beethoven, ignoring the experiences of other disabled composers, performers, listeners, etc. Secondly, it forgets to think about HOW we talk about Beethoven’s deafness, or other peoples’ (dis)abilities.

Now, I’m not a Beethoven specialist, so there may well be people in that field who work against the more widespread idea of Beethoven that I’m about to describe, garnered from the Music History survey courses of my Undergraduate days, and some extra-curricular reading. With people studying his conversation notebooks and such like, I can see that this task could certainly be undertaken. Nevertheless, the details of the composer’s life which are regarded as things which should be known more widely are worth analysis.

The fact is, thinking about Beethoven with the tools and knowledge I’ve been given – and, to reiterate, this is not a specialist’s knowledge – I feel like these tools and this knowledge point to an understanding of Beethoven as being great despite his disability, or by overcoming his disability. Why – progressive hearing impairment and deafness being things which shaped Beethoven’s socialisation and hence his “self” – why not understand them as part of what makes him great?

The whole idea of “greatness” is, of course, also a problem, but one for another time. But we can also consider disability when deconstructing the idea of greatness. In the case of Beethoven, is his progressive hearing loss one of the factors that makes us consider Beethoven great? Would we hold his late works in the same high regard if he hadn’t been deaf when he composed them?

I’ve suggested earlier that, tokenising Beethoven, we ignore the experiences of others. Let’s have a closer look at some more local examples of the ways we silence disabled voices in music history. I’m going to concentrate on the treatment of disability in Laurel Fay’s well-renowned biography of Shostakovich, Shostakovich: a Life (Oxford: Oxford University Press, 2000).

Firstly, did you even know that Shostakovich was disabled? It’s simply not something academics have bothered to spend time on. More ink seems to be spilled on where he went on holiday for a few weeks than his numerous months-long stints in hospitals.

In his younger years, Shostakovich was a pianist, playing on concert stages, as well as making a living playing in cinemas. He had to give up the concert stage in the late nineteen fifties, however, when he began to experience weakness in his right hand. This was the beginning of a chronic and progressive condition, an adult form of poliomyelitis, in which his hand aand other limbs became increasingly weak and poorly controlled.

20070206_shostakovich_piano_33

Shostakovich had to give up work as a concert pianist due to polio.

Chapter 15 of the biography, titled “Immortality” is a particularly good example of how we value the voices of different historical actors based on their (dis)ability. Fay begins the chapter with details of Shostakovich’s trip to Kurgan in February 1970 for treatment with a Dr Ilizarov. He made two of these trips that year.

The composer (and the doctor, for that matter) seem to have regarded this treatment as a success. Drawing from a letter Shostakovich wrote to his friend Isaak Glikman after his first round of treatment with Ilizarov, Fay lists some of the activities he was again capable of: ‘Among the achievements he now boasted of were climbing staircases, boarding buses (albeit with difficulty), shaving with his right hand, buttoning buttons, and not losing the spoon on the way to his mouth.’ (p. 265) This is followed by a description of his meeting with a journalist who came to interview him about the results of his treatment: ‘The first words out of the composers mouth were, “I can play the piano again!” At this stage he was able to compose in the mornings and was practicing the piano two or three hours a day, expecting to return home in a couple of weeks.’ (p. 266)

However, Fay does not let her readers share Shostakovich’s joy at being able to return to an activity he so loved (even if not at the concert standard he had previously achieved). Rather, she presents his statements about the success of his treatment as clutching at straws. The paragraph after her mention of the composer’s second round of treatment with Ilizarov, Fay states: ‘Shostakovich clung to the promise of a cure. In late September 1970, he wrote Shaginyan from Kurgan that he expected his strength and capacity for work would soon be completely restored.’ (p.268) She soon dispels his hope: ‘That he was still physically weak, tiring easily when he tried to play the piano, was noted by Litvinova. When he saw Shostakovich in Leningrad in December 1970, Glikman observed that he walked with difficulty and his right hand was as weak as ever.’ (p.268-9)

In essence, Fay is presenting the voices of Litvinova and Glikman as more authoritative than that of Shostakovich himself in assessing the results of his treatment program. She grants those voices she reads as abled a respect which she denies that of the disabled person. And the patronising tone with which she describes the Shostakovich of the time – ‘he tried to play the piano’ – makes it abundantly clear that she expects her reader to do the same.

*I know that my use of the unadorned term “music” to talk about a highly canonised culture dominated by dead, white… men is problematic. I’ve used it in this post for a couple of reasons. Firstly, while a variety of other terms e.g. Western Art Music have been suggested to better delineate what I’m talking about here, each of these also require unpacking, which would make this post much longer. Indeed, said unpacking would probably be longer than the blog’s intended contents i.e. what I did write. Secondly, as this post, particularly in the first half, works towards unpacking this canon, I thought the use of the broad term reflects this to an extent.

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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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Tom Robinson and Francis Myerscough for NUS LGBT Committee, Disabled Students’ Representative – Our Manifesto

I’m Tom Robinson from University College London Union. I’m a transsexual autistic with depression and a blood sugar disorder, and I like dogs. I’ve been LGBT+ Officer at UCLU for the past year and was Disabled Students’ Officer before that.

I’m Francis Myerscough, from University of Bristol Union. I’ve had a clinical depression diagnosis since my early teens, and have more recently developed ME, which has necessitated a massive change in my life. For a start, my study is now very part time, which, as a PhD student, with the pressure for a life entirely defined by my research, doesn’t seem to go down to well.

Policies:

  • Full opposition to all cuts to public services
  • Campaigning for radical service expansion, not just an end to further cuts
  • Conduct research on what we as disabled LGBT students want from our movement
  • Ensure that all potential conference venues are checked for physical accessibility by someone with mobility impairments before booking
  • Best practice guidelines on how to label gender-neutral toilets in a way that is sensitive to the needs of both abled toilet users and disabled toilet users
  • Close work with LGBT rep for disabled students’ campaign, women’s officer, women’s reps on committee and Black students’ representatives on committee
  • Campaigning for better understanding of intersectional identities in disability services and gender-related healthcare

Anti-cuts

We stand against the cuts to essential funds and services made available to disabled people; Disabled Students Allowance is one of the next items on the coalition’s cutting block, but we also need to campaign against cuts being made to the Independent Living Fund, and Employment Support Allowance, all of which are invaluable to some students, both in FE and HE.

On post degree prospects

We recognise that disabled students often do not leave education with the expectation or ability to enter employment. It is vital to make the workplace accessible for those for whom accommodations can mean the difference between being able to work and being unable to work, but we need to remember that an individual’s worth is not contingent on their ability to work. We recognise that the needs of disabled students who are unable to have jobs due to their impairments are vital and we are sick of rhetoric reducing our value as disabled people to our abilities to meet abled people’s expectations.

Healthcare should be for health, not for profit

We need radical expansion of NHS services. Simply restoring service provision to its pre-Coalition levels is a starting place, but is not enough to meet the needs of people who were failed by that system before it was drastically cut, specifically trans and disabled people. We fully oppose any cuts to existing services, as well as future plans for service development that do not prioritise the needs of people above profit.

Research

Motion 204: Access Goes Further Than Finance – proposed and written by Tom – mandates the incoming rep to conduct a consultation ‘regarding their experiences as Disabled LGBT students, and in particular, how these have affected their participation in NUS LGBT events, campaigns and conferences and the wider LGBT student movement, both in their institutions and on a regional and national level.’ This will be invaluable in focussing our attentions.

Venue accessibility

We need to ensure that accessible venues live up to this claim. The accommodation at this conference does not provide sufficient space to navigate in a wheelchair. We need to give students with different access needs the opportunity to comment on whether venues and accommodation are appropriate before we book them. If elected, we will offer students with mobility impairments, and specifically wheelchair users, the opportunity to look around prospective conference accommodation before it is booked to check that it meets their needs.

Disability care while LGBT, trans care while disabled

Medical and care professionals need to have an understanding of the intersection, not the simple connection, of disability and LGBT statuses. Attitudes at present are simply not good enough. For instance, both Francis and another delegate have had our ME diagnoses denied by doctors because of our trans status. This reduction of all aspects of our life to our trans status is a form of erasure, pure and simple.

This goes both ways. Gender identity clinics are often incapable of understanding the experiences of disabled people who also need their care, and have expectations regarding social transition which disability might prevent someone from fulfilling while still needing transitional care. For example, if a disabled person is incapable of both employment and having a volunteer role, they cannot always prove that they are ‘living full-time’ and thus meet requirements for hormones and/or surgery. We need a radical overhaul of trans healthcare, and a vital part of this is acknowledging that it is possible to be both disabled and trans at the same time.

Mental health care also needs an understanding of the intersection of disability and LGBT statuses. We need an end to a system in which being trans can be considered

Disability services need to understand the needs of their service users with regards to gender identity and/or sexuality. We need an end to the assumption that a disabled person’s identity hinges solely on their disability, with no other intersecting identities, and instead for disability services to take a holistic approach, recognising that a disabled person’s sexuality and/or gender identity can also play a large role in their life. Services must understand the stresses of living as an LGBT person in a heteronormative and cisnormative world. For example, wellbeing mentors need to understand the pressure on LGBT people to educate those around them about their identities and how that can damage someone who also has energy impairments and/or mental health issues.

Gender-neutral toilets

We are glad that more and more students’ unions are incorporating gender neutral toilets into new builds and/or reallocating existing toilets, as they provide an essential service for many students. However, it is a concern that many unions do this simply by relabeling current wheelchair-adapted toilets as also being gender-neutral toilets. In a world where disabled people are denied sexualities and genders of our own, and particularly disabled people with physical impairments, what does this tell us about our view of disabled people’s genders and sexualities? From discussions on the NUS LGBT Facebook page, we have seen that many unions are unsure how best to label and signpost gender-neutral toilets. If elected, we would work with the LGBT rep for the disabled students’ campaign to produce best practice guidelines on how to incorporate gender-neutral toilets without creating a situation where disabled people are considered as if we do not also have genders and trans statuses.

Working with other liberation groups

We anticipate a close working relationship with the LGBT rep for the disabled students’ campaign. In addition, we think it is vital to listen to those LGBT disabled students who experience oppressions and intersections of oppression that we do not share, and will work closely with the women’s officer, women’s representatives on committee and the Black students’ representatives, to ensure that we are meeting the needs of all disabled LGBT students.

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