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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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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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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Yes, I’m depressed; No, this isn’t depression

TW: Ableism

I’ve lived with a diagnosis of clinical depression since my early teens. My ME symptoms have surfaced much more recently, since about seven months ago. Nevertheless, the recent developments in my health are frequently regarded – by professionals and others alike – as interlinked. In some ways this is useful: my experience of each has impact on my experience of the other. And coming to terms with a new set of capabilities and limitations has put stress on my mental health. At other times, however, the links made – again by both professional and non-professional people – are deeply problematic. Indeed, some remarks I have been the subject of are not simply unhelpful, but deeply ableist.

I’ll explore first an encounter I had with a professional person, a psychiatrist at a Gender Identity Clinic (GIC) with whom I recently had an appointment. I think it’s fair to say that we didn’t get off to the best start. The first question she asked was an enquiry about my general health. The GIC do not currently hold a copy of any referral letters etc regarding my ME, and she therefore may not have known about it in advance of the appointment, so I thought I ought to raise it, so we were on the same page. I was expecting to swiftly move on to the next question.

Instead, she replied by saying, “As a psychiatrist, I would say it’s depression. What do you think?” At the time, I was very kind in my replying, saying that I think that’s rubbish, as my body feels tangibly different. I associate depression with a feeling of lethargy, heaviness, inertia, very different to the muscle fatigue and lack of energy to do things, even with the best will in the world, that I feel nowadays.

Looking back at the appointment, I’m less forgiving. Our appointment lasted two hours, without a break – and that’s two hours of intense, no holds barred interrogation. Add to that the journeys between cities to get to and from the appointment, and it made a day which it took me over a week to recover from. Seems rather a thoughtless experience for any medical professional to facilitate. Coming from someone who feels qualified to comment on the diagnosis (despite it not being her specialism) it’s all the worse.

Furthermore, when I look back the bulk of our appointment feels like an attempt to confirm the depression hypothesis. In particular, I feel that my experience of and attitudes towards the multiple friends who have killed themselves over the years was overly emphasised, and strangely conducted. The thought aired by the psychiatrist, that my matter-of-fact attitude was “tragic”, seemed out of place. I can see why we got to the discussion, but not why it needed to take so long, extending my appointment time to such a ridiculously inaccessible length. A friend’s appointment of the same type lasted between thirty and forty five minutes, he told me.

Second, I’ll explore a situation with a nonprofessional, who regardless felt qualified to comment on my condition. This is someone I used to live with, but moved away from due to their comments about and actions relating to my health and gender identity.

When I was referred to the local ME service, I sent this person information about the condition online, and made an effort also to explain how I felt in terms which related to their own experiences. The response I was met with (both to this and to other concerns which I raised) was a link to a motivational website. Not wanting to cause offense, I said that this wasn’t my cup of tea.

In short, a lot of what followed were accusations that I simply didn’t try hard enough. Apparently I am mentally weak for wanting to be treated with respect, and for not fitting as much into my days as others do. This person had previously repeatedly told me to go out more, and to do more in general. And whenever I explained that this makes things worse rather than better, I was scoffed at, as if I was making excuses for being lazy – clearly I couldn’t actually be feeling that bad (physically).

The problems here were twofold: firstly, an equation of my state of mental health with physical symptoms, and secondly an utterly ableist attitude towards dealing with both of these. In short, I was told that the way my body felt was simply because I was thinking about things the right way, a statement which reduces the complex relationship between mental and physical health to a simple equation, and which reflects the problematic notion that the whole situation is somehow my fault, and a sign of my weakness as a person.

 

In my introduction, I did say that my experiences of depression and ME interlink, though. As I stated there, however, this in in a very different way to the assumptions made in the two examples which have made up the bulk of this blog post. Where each of those makes an equation, and proceeds more or less problematically from that, a better understanding looks at how my experience of each diagnosis impacts on my experience of the other. (This could be compared to an intersectional understanding of experience, as I will be writing about in a future post.) As I come to terms with my newer diagnosis, I keep a careful eye on my older one: as I said in my first post on this blog, I feel like the carpet has been pulled from under my feet. Having to abandon the busy life which once defined me is a distressing, and, yes, a depressing process. However, it’s also made me realise just how much my mental health has improved (on my terms) since, say, this time last year. I would not say that my mental health is good, but I know that if I had to come to terms with the changed capabilities associated with my developing ME, I would not have coped nearly as well then. It may not be good, but my mental health is certainly more robust now. And I’m proud of that. I’m proud that I can hear people say that I’m weak and know that they are wrong.

A second way in which one of my diagnoses inflects the other is precisely in situations such as the two described above. And I fear that my existing mental health diagnosis may continue to encourage people not to take my physical health complaints as seriously as they should. Saying this, however, I do know that this not being taken seriously happens to many diagnosed with ME (or seeking a diagnosis).

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