‘Doing all the work.’ Activism, work ethics, burnout and working ‘according to the circumstance.’

I’ve just seen a very thought provoking thread on a topic I have been mulling over for a while- “Disabled people are lazy.” I’m not talking about the Government spin on ‘getting us back to work” but campaigners that complain that they are ‘doing all the work’. This theme is becoming so depressingly familiar in ‘disability rights’ circles that I’m beginning to wonder whether Lord Freud’s ethic is finally getting through to us and we are really beginning to believe that disabled people ‘do nothing’. Certainly there are a number of campaigners speaking for disabled people who seem to feel that they are being let down by those who are also ill but are ‘choosing’ not to help.  Someone once said to me, “Well, you’re not really committed to activism are you?” I’d paraphrased Martin Luther’s 1517 quote,” Here I stand I can do no other.” Just because you could do nothing else in all conscience doesn’t mean you don’t WANT to be there too. Nor that you CAN do it every day. I have been manhandled by police – scary when you have cerebral palsy (C.P.) It was not for a protest, though so I don’t feel the discrimination is ‘real’ yet!  But the danger is real.  I was brought up on stories of heroism and the two world wars and I feel a great sense of shame when I consider that I am not brave enough to dare going to modern political protests.  Yet, I think we should all be very afraid that if we keep silent now through fear, we may indeed have no voice at all later as we are shuffled off to care homes. My mother has even picked one out for me if anything happens to my partner and has told me that “You are someone else’s responsibility now.” Much asier than thinking about support or equipment and it has worked for her 93 year old father.Maybe then I will REALLY begin to shout, or maybe long before. Because I will not be abused again, because I will NEVER stand by if I see someone being abused, even though a 4ft 11 woman with C.P. is not much of a human shield! I will NOT walk on by when someone else is attacked As my brother says each time he defends someone who is being attacked, “What else could I do?”

I’m sure so no personal attack on any individual is intended (usually) but I was not surprised to find that I was not the only subscriber who felt that this kind of rhetoric from another disabled or sick person is distressingly like the Government rhetoric, or for many of us, depressingly familiar fro our schooldays, and that on both counts it touches a raw nerve. As a workaholic myself and one who was building up a quite an accidental following for my ramblings without any desire for fame until a certain Facebook page closed.  I’m not yet able to get my brain around forums due to their layouts/my neurological problems and so suddenly I felt that many people I had once been helping (or at least I was finding words that chimed in with their frustrations and feelings about current affairs, quite an accolade for a one time Conservative with one foot firmly in the dim and distant past of Shakespeare and Chaucer. Suddenly and without warning -in fact while I was taking some much needed time out to save having to take much longer if I overdid it completely – the plug was pulled and 600 people (more or less) found themselves without a ‘spiritual home’ or the back up, support and friendship network they had built up. Internal politics aside, my biggest worry was the number of people who would maybe have nowhere to go where they felt listened to, much as back in the bad old days before i had a computer I had assumed that no other disabled person felt as I did. Other groups (many and various) soon popped up to fill the gap but the sense of cohesion seemed lost, even if sometimes we had bickered like a band too long on the road, we’d all been in the same band, even if sometimes we were singing in different keys and from different sheets of music entirely or from different backgrounds and styles of playing.

Back to that school bench niggle- that sense that once again we are being told, ‘Listen up you slackers’. I went to an ordinary comprehensive school because i was considered ‘too bright’ or ‘not disabled enough’ for a special school (whether that was a comment on the assumed quality of the teachers at special School or the state of my legs I’m not quite sure but I know that I pretty often felt ‘too bright’ for the Comp school teachers and yet often I was made to feel as if I was completely and utterly useless and in a school that prided itself on its league tables ‘just not trying hard enough’. I might be ‘out of bounds’ because with dyspraxia, I had no idea where I was _supposed_ to be or I might be getting a ‘D’ for GCSE Maths despite five years of hard work (actually, that was my triumph moment as a dyscalculic in the 5th percentile for Maths ability, but the Head Teacher only saw me as ‘letting the school down’ despite the fact that I had achieved A* As and Bs in every other subject ‘done the school credit. The terse comment ‘She has let herself down with a disappointing result in Mathematics’ would have followed me to my first job had I being going straight into work, in fact would have followed me to College and University had the authorities there been only interested in the front page of my Record of Achievement.

Nowhere in my ‘Record of Achievement’ did the science subjects mention anything but my efforts and attention to my work-and this was Thatcher’s Britain yet they still gave me credit for effort and the hours of unseen work that I put in, even if many of them never realised that burning the candle at both ends was an understatement and that in addition to the school day and doing cleaning for my mother, I would stay up ’til midnight studying and then get up at 6 am to finish projects or reports. God forbid today that I should get credit for mere effort -isn’t there some new phrase ‘end to the prizes for all culture’being pedalled to that effect) I wish I still had a copy of that otherwise glowing report in which EVERY teacher who remembered that one student among many praised my skills and abilities or failing that, where I had no skill at all my effort and determination (‘to ‘overcome all obstacles’ but they weren’t trained in disability correct language, bless ’em.) I don’t have it, because after 5 years of failing to find something that someone with no skills beyond the academic could do if not allowed into academia, teaching or administration (dream on) I felt that all my efforts, abilities and hard work were entirely wasted and tore it up- probably shortly before I started suffering from full blown depression on top of the cerebral palsy the dyspraxia, the tail end gloom of years of abuse (as standard) and the brain tumour.  A pity, because no one appoints  people to lord it over the efforts of others and take the credit is not infallible and years later I can see that heads of anything, appointed or self- appointed may sometimes get a little too big for their boots. They might not always even be fair, or just, or even fully informed of all the facts when ‘speaking for ‘ others, or even for themselves. Leaving aside the particular iniquities of a woman who could write ‘Could do better’ on a disabled student’s Maths report whilst letting two paedophiles in training ruin the lives of at least one quarter of the female (and otherwise) intake and refuse to call the police for fear of bad publicity, once again I feel the niggling of guilt.

Guilt that I am ‘not a published writer in the Guardian, that I haven’t so muc as a signature on a letter in the Guardian, that I haven’t ‘done anything ‘for the cause’ with my life or with my talents. BALLS. Then I have to remind myself that I never planned to- nor did any of us- we’d all like ‘proper jobs’, not to be slaving away for free in Tesco, or on keyboards our work unrecognised by family, friends, state or even those that we thought we were working alongside.  As soon as I can find someone willing to help me transfer some 42,000 words to blog form and proof read it from acquired dyslexic incoherence to the sort of coherence a Master’s graduate can be at least not TOO ashamed to own as her own work, all those people who need guest posts can take your pick of 4 years work and presumably tire themselves out criticising the fact that I will NEVER in a million years say “What did YOU do for the cause?”  Never before did I realise that two speeches from history that I at least took for granted as good stirring stuff, Shakespeare’s St Crispin’s Day speech and Churchill’s on the Battle of Britain (‘Never in the field of human conflict’) begin to have echoes of the “You aren’t trying hard enough” feeling of work returned as ”1/10 . This non-combatant  was writing to disability papers and local papers on disability issues when she hadn’t HEARD there _was_ a Disability Rights movement and who wrote a dissertation on the historical treatment of disabled people and Richard II in particular before she knew of Disability Studies or anyone even guessed that a scoliotic Richard III might be buried beneath Leicester Social Services car park.

I stopped being able to do editorial stuff when things when computerised (long before I had the confidence to take on such a role so the fact is that I officially have TWO printed articles to my credit besides my university dissertations and unpublished material. IS it that unpublished material that makes me feel a failure, or is it the folk who tell me that I am a failure until I publish?  If one MORE person tells me that ‘your carer can help you’ (when he’s finished all the physical stuff I don’t do, I suppose?)(I love to write but lack the technical skill to get it out there ’til lately. No one was offering to help me set up a blog (and after two brain injuries it does take longer to set things like that up) No one was offering, but then, I never asked, and as I was famously told by a pharmacy assistant who had refused to help me work out how to get my new rollator across the curb “You should have said what you wanted.” Well, I thought I’d just said “Somebody please help me” but there you go, what do I know?  NO-ONE is helped by burning out and the folk that are shouldn’t be having to, and the folk who have nothing LEFT to burn shouldn’t feel guilty. We are all sick or disabled but some DO have more to burn than others and as so many of us say, so often we have good days and bad days. . I know about doing more than is asked and being told it is not enough, taking on 20 hour days and still being called a failure, so I can sympathise with all points of view. Sometimes though, those who do the most work are beavering away in the background and not saying anything about it. I know how many others on this thread are burning with a mixture of shame and frustration after years of being told ‘you just didn’t try’ when school work was returned with low grades after burning the midnight oil and sweating blood…or being told ‘you wouldn’t have fallen down if you hadn’t been playing around”. I won’t fall down? amazing!  What, not even with cerebral palsy (CP) ???

While there are those who seem not to be putting their shoulder to the wheel, it is painful for many who would LIKE to to be told they are ‘doing nothing’. If we are ALL ill, then we all also know what it feels like to be told by the State/ the next door neighbour, the ‘friend’ that we are ‘doing nothing all day’ so to hear anything that sounds like that accusation from the lips of other campaigners will always be a painful trigger. If we start accusing each other of that, we are done for, indeed I would have left the Spartacus Facebook page on the basis of some comments made that someone who has been disabled, derided, ignored abused and denied work or input had not “done anything” useful for the cause.
_Any_ any disabled person is IN the fight by virtue – of disability. They don’t get to dip out or pass or have a day off!  I had an adrenal tumour from it before Atos were even thought of. The sense of frustration that comes from doing things singlehanded, dealing with egos, The vibe that is out there sometimes when the workaholic needs 5 minutes that is not for the cause (isn’t it?) that somehow to struggle with the personal issues around this fight (or another one) is not as important as to struggle with the ’cause’ publicly is best put to bed by an unpublished quote from Emily Wilding Davison:

“The sacrifice varies according to circumstance. It may be loss of livelihood, position, wealth, friends, relatives and, not least common,loss of health or even possibly life itself.” (The Northumbrian, 88, Oct-Nov 05)


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