“Yes I can imagine it But- I don’t need to” : ‘Imagining’ ableism in women’s health settings

 The blogger who wrote ” Now that the NHS has finally agreed to sterilise me, I can relax. I don’t have to keep taking pills that make me sick or worrying about replacing a patch or coil. I don’t feel sad or regretful, or worried that I’ve made the wrong choice. In fact, when the consultant signed the form, I felt elated – something I’d never get from a positive pregnancy test.  And I’d like to see the day when both choices are respected equally.” So would I. I have been there, where my choices are not respected.  I have sat and raged or screamed internally and felt the blankness of utter despair.  The comments are always the same, whether from strangers, friends or medical professionals. When someone hears my decision, they tend to assume I’ve made a snap judgement without considering the implications. They don’t even stop to ask ‘”Why” and then without waiting for an answer: they try the guilt trip. “Don’t you think that’s a bit selfish?” (yes the irony is not lost on me!) if you want to know more the rest is here: https://ladycrookback.wordpress.com/2014/10/20/choice-is-optional/

This “non-essential operation which will be risky and painful” was proposed for me by several people before I was 25. I am disabled and we still live in a society in which a certain proportion of people would prefer if I did not have children, so much so that they hint, suggest, nag, coerce and criticised me for not getting sterilised and were prepared to come out with statements like “A miscarriage would be better in your case”  when I tried to discuss my desire for children.

The concept of pressuring young affluent women to have children seems to be as toxic as its opposite. Like many  women of my acquaintance this gulf in the experiences of the white able bodied feminists and the rest of us is one reason I am ‘outgrouped’ by those in society who frequently claim to be wholly on the side of human rights for all and especially women’s rights.  I have had hate from social workers of feminist groups more than I suspect she could imagine. In the end power wins. I could paraphrase her and say that I have wanted kids since my late teens and always known I wanted them. I’ve wanted them for years, but that doesn’t mean it was an easy decision to make. It’s one I’ve researched, considered, weighed-up and defended, over and over again. And I have had to defend it every bit as hard as any woman who didn’t want kids.  The idea that ALL women who want kids get instant approval, shows a lack of research or total denial that disabled people fall into the category of ‘people’ at all. In fact many of those who choose to have kids ARE questioned and belittled repeatedly on their fitness for parenthood and are in extreme cases refused the privilege through forced sterilisation, forced abortion or forced adoption.
But to pick up where this writer left off, the kicker is usually, “Who’ll care for them/you/your husband? What will you do if he dies?” As if I were totally incompetent to parent or even care for myself! And yes, I wonder who will care when I am old?” Not FOR me but about me, the way we cared about our parents, the way I saw my mother care about her mother, her aunts and the sense of community that middle class houses with kids over for long summer days exudes…. I know _I_ won’t be around to help my mother in old age. Or maybe I will, even if she did advocate her own daughter’s sterilisation and give zero emotional support when the doctor accused me of selfishness, and then advocated destroying a potential burden on the free healthcare rather than thinking taht my child might be the support that rich women are often told they will need. .

Sterilisation is drastic: a big, irreversible, serious decision. Made by someone else for ‘your own good”. Would they say the same to a 26-year-old woman who decided to have a child? Yes if the woman is poor, or has a history of familial abuse or is disabled, so does she say ‘woman’ and see only her own group? The GP thought I would “change my mind” if threatened enough. Can you imagine a woman in their late twenties having to go to a doctor over and over again to beg permission to have a baby? That’s what I’ve had to go through and if she cannot imagine that then she really should not have tried to get support for the reverse side of the article. I have a great deal of respect for the choices of individual women but when they assume taht their situation is unique and then layout an ‘impossible’ scenario that is actually as familiar as their own skin to many women, they are no social justice advocate!

It’s been surprisingly hard to convince the NHS that _my_ decision was valid.Impossible in fact. I’ve been on every form of the Pill since age 16 had everything from near psychotic mood swings to no periods for 3 years. Ended up with PTSD that was ultimately used to PROVE that I would be an unfit mother but that very PTSD was brought about by the abuse, inherent, structural and internalised ableism in society taht set up in my mind and in the mind of all those around me that I am not fit to have children and that this is NOT eugenics, this is “choice”.  My mobility issues and previous jaundice and puts me at increased risk of blood clots but never once in all those years was I asked did I smoke, did I want to be on the pill or was I feeling OK? In other words the first time i really realised my GP was failing to do proper checks on my well-being while on the Pill was when a friend said, “But surely they check you every year?”

No. I’m disposable.

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Fear and Loathing in the LGBT Community: Other People’s Definitions of Yourself.

(Note this is an open work in progress: suggestions on edits are welcome from LGBTQIA friends  who think I have made errors of terminology. – writing tired. Very tired)

Outside the LGBTQIA+ community the friends I know are totally uninterested in telling me who that means I must love. The straight community might tell me I should not love other LGBTQIA+ Granted I lost many of those who told me how to feel while I was trying to sort my health and my marriage out some years back and granted most of those remaining are probably assuming it is immaterial that I say I’m bisexual since to all appearances I am married to a man. What I find distasteful is that while I’m sure I have many misconceptions about other genders and identities many of the people I’ve heard say, “I identify as X because bi means two/bi is transphobic” are just as capable of being transphobic as anyone else. I had heard over and over that ‘bi is transphobic’ for a whole year before anyone even managed to explain where on earth that concept came from. “I’m not transphobic because I’m pan.” OK. That individual pan person is not transphobic, I believe them and they shouldn’t have to prove anything. But should I have to prove I am NOT transphobic because ALL bi people are assumed transphobic because we are _assumed_ to only like two genders. Did I go through the angst of realising I wasn’t straight, realising I was bisexual, the risk to my marriage and yes as we all do the risk of potential hate from family and friends and heterosexual partner or ex partners did I do all that just to be so narrow as to only like +_two_ genders?
Did I think about it before I heard ‘bi is “transphobic” no I confess I didn’t but that would probably be because one of my first LGBT friends was trans and because my first experience of someone coming out was a trans colleague of my father’s. So it didn’t take me long to realise I’d be flattered if a trans man, trans woman or non-binary person wanted to date me, be my friend, hang out with me as I would be if generally. My criteria for dating? 1) I need to enjoy your company and 2) don’t creep me out by acting like any of the abusers I have survived. 3) Don’t be racist, ageist, ableist or so right-wing I wish we’d never met. 4) Don’t tell me who I can’t/don’t love/fancy/ like any more than anyone else in the LGBTQIA.
Especially 4. I’m getting tired of it – we all are – and I hate the thought that I might make fewer trans friends if they clock me as bi. Should my trans friends have an extra burden of worry that I MIGHT be transphobic because I ID as bi? I might be transphobic. But in the same way as anyone else I hope it will be because I’m an ass who didn’t read up enough or opened my mouth without engaging my brain, am not listening enough to trans friends/podcasts/reading enough articles not because I am bi and certainly not because I am trans-exclusionary.
I have the ability to love people of two or MORE genders mine or any others. And how the heck can I guarantee to be trans exclusionary even if I wanted to be? Some people I know may well not be ‘out’ to me. others I know are LGBT but I don’t know which ‘letter’.You should never assume someones gender, race sexual orientation, disability or sexual preferences just from looking at them! Granted some things may be obvious and humans use judgements. but assume makes an ass out of you and me.
Comments like “I couldn’t sleep with them because I wouldn’t know what was – you know- under their clothes, it would be like sleeping with – disabled people” shocked me to my core not only because I am disabled and the person in question said taht to my face but because if I don’t get to KNOW people before I think of sleeping with them what right have i to know what to expect? What right have I ANYWAY? That’s just me, but if you are ‘scared of what you might find’ then open casual sex probably isn’t for you either!
The rest of the non monosexual and monosexual community should NOT get to dump all its transphobia on bisexuals. Actually troubling to learn from, talk to and engage with trans people and bisexuals – and trans bisexuals before judging would actually teach a lot of people within and without the community how wrong they are about what bi means and also about what trans means. Rather like the illogical of bathroom bills however, this problem did NOT arise out of lack of knowledge so much as a need to have someone else to put their fears onto. I am not the repository for everyone else’s unacknowledged or internalised transphobia!
My next date could be trans. I know I wouldn’t be there ‘in spite of’ their gender or genitalia any more than they’d be there in spite of my disability!
Oh and yes: one last thing. When they folk forget that bi people can _be_ trans as well isn’t biphobia and transphobia just what they _are_ doing?
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On Bodies and Beauty

You have made an excellent point about how we view bodies and how we sometimes forget people enhabit multiple roles and have comfort zones. As a disabled woman with physical impairments I generally find re-enactment the safest and least prejudiced space in which I move. However as a woman with spinal curvature that is minimal but noticeable to costumiers, I have sometimes felt objectified by comments such as, “You have a weird back/odd feet/ lopsided x…”. As a re-enactor a of many years standing, looking different and having it remarked upon can feel similar to being an endless beginner in ill-fitting clothes, because one’s body does not fit our modern social expectations of physical normalcy or the modern desire for perfection. Remembering that social differing experiences of the body outside the fitting room, bring to that room and highly appropriate when considering portrayal of a wide social range that then as now, any deviation from the physical norm can bring a regular experience of ridicule and suffering. Getting a job done and getting it done well includes remembering these are people inhabiting diverse bodily experiences of a social ideal.

Many women throughout history with poor nutrition and infirmity were probably shorter than my own 150 centimetres (4″11) and archaeology and the scale as suggested by pattern books such as Garsault can give us some idea of the height of women in the period. And without a doubt there were many who struggled with the daily reality of physical deformity and ill health from accident, congenital conditions, inherited ‘abnormalities’ or childbearing alongside the other marginalisations of womanhood. As a social justice feminist/writer and Disability Studies researcher with my other hat(!) I wince on the occasions when someone, re-enactor or member of the public, makes a clumsy comment about my physical appearance. On several occasions, simply because I carry a walking stick and I am in costume, I have had my stick grabbed out of my hand on the assumption that it was only a prop with inevitable result; my falling flat on my face! I’ve also had to decide to deflect suggestions I take the role of a beggar or cripple, when in my hobby I would really rather take a break from discussing the problems of poverty and deformity that beset my everyday life and I like other reenactors and members of the public also wish to take a break from the topic which forms a large part of the writing of my working life, and yet the absence of discussion within reenactments suggests that has at least some work to do given the invisibility of disabled people in both worlds; we are still very much invisible while still at the same time showing up to represent the period and the social customs.

A costumier is trying to fit a jacket to a customer effectively and I appreciate their expertise and that in this context my curved spine becomes a practical tailoring problem, in other contexts is it problematic for me as my health affects my ability to work in certain roles usual as a re-enactor (and elsewhere) and in both re-enactment and the modern world, in order to be seen as feminine, socially acceptable and useful, beauty matters more than we think.
It is important to consider how much the business of ” good historical recreation” hangs on creating a certain idealised image centred upon modern notions of appearance created by idealised images of the body which actually have their beginnings in the 18th century. Insights for the absence of images of the lower classes in 18th century society can’t be explained by the fact that the poor woman is not the social ideal to be aspired to. Neither was she considered to be physically or morally something to reach for in a wider context and it was only with the unusual artist such as Hogarth that the poor become visible and not idealised and the deformed and socially unacceptable visible.

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Wish Me Luck as You Wave Me Aside….

I’m going to see my new GP on Friday. I haven’t been in for months and the receptionist was worried! I have just sat and waited for 3 twisted ankles, non stop tendonitis, agoraphobia, insomnia and chronic PTSD to calm down for about the last six months.Oh yes and now what we think were actually two TIAs. (commonly known as mini-strokes, though it is more complicated than that)
 
The GPs knew about my having funny symptoms at the time but I didn’t get an ECG/EEG? because I didn’t explain very well and I didn’t really think you could have a stroke and not really know about it, not even if you’re a fairly overweight-under fit 35 year old with CP.
 
I collapsed the day my ESA paperwork arrived but I thought: well, it’s stress everyone does that and if you haven’t dropped dead outright from a heart attack, you’re still here! I even joked with my carer and the phoneline Emergency Dr that a person with cerebral palsy having a stroke would be a bit hard to spot! Apparently I was right because I only found out about how a TIA works later and it turns out that barring already having a lopsided side with CP I’m a bit textbook, blurreed speech, stumbling, trouble moving my mouth but OK the next day. I wish we had more folk like my old GP! I’d not feel like a hypochondriac suggesting it might have been TIA to him!
 
The irony: for the past fortnight I have been too embarrassed to ring the GP or go in because a) it was ages ago b) I’m not dead and c) my old GP has left. And d) Oh yes, d) ….. Possible TIAs are a worry but death seemed preferable to an NHS that would even THINK of putting the DWP in the lobby: now that WOULD cause a stroke 🙂 I’ve not left the house since a week before Easter because the DWP who killed my nephew ten days after I had a miscarriage are every bloody where in theory.
 
Friends with existing conditions please note: I think we have an embarrassment problem about using our wonderful 24/7 NHS and it’s killing us!
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Ignore This Post If It Could Spoil Your Christmas…..

Trigger Warning: Suicide * Miscarriage *Mental Health* Sexual assault* rape trauma * abuse * Drugs *

Someone I hardly know has dumped some very emotionally toxic stuff on me. She knows, and I also know that she cares deeply, that  I lost a baby at Christmas, just ten days before a family member on my husband’s side committed suicide.  Firstly she asked me whether I’d got in contact with them yet about compensation from the DWP.  Since they were jointly responsible for his death along with the DWP, do they really deserve any compensation? Given the way they spoke of him in life you would think they would consider his death a great compensation, sadly. However, this is the second time I have had to tell her that I CANNOT have contact with these people for legal reasons as we have been forced to go “No Contact” with them.   Their stopping us from getting any grieving time was the tip of a toxic iceberg, and putting ourselves back into any kind of contact with abusive family whom we had left for a very good reason is no way to mental well-being.  It took a long time to go no contact and we would not paradise that a third time for any reason under heaven. If you need to understand more on why this is so, google ‘gaslighting’ and ‘hoovering’ and ‘narciccists.’ But I shouldn’t have to defend this position to anyone.

Next she decided to tell me that she tried to commit suicide last week. This is a virtual stranger. This person who has now ruined what had looked like being our first normal Christmas for 10 years – or as normal as it can be when you lost a baby on Christmas Day after abuses by medical staff showed both you and your husband just how disablist the NHS is. Although I admittedly gave her my email so that she could contact me if things got bad and I understand that she prefers to wait until things get bad before bothering people she waited until AFTER she had tried to kill herself without seeking help from friends or family, and for me and my husband this is bound to trigger memories.

Christmas is not a good time to talk to me about a topic which brings back terrible memories and which is painful not just because someone needlessly lost their life to the DWP, something I’d dedicated years of my life to preventing both in the individual case of the young man concerned, personally and as an disabled anti Atos activist protester/ blogger. The trauma for us however is that not only did someone die who we had spent years of our lives trying to help and putting ourself in harms way for because his true enemy was neither the family tendency to turn to drink or drugs in a crisis, nor his bipolar (a diagnosis we only heard about after his death) nor his sexual abuser who like so many of the high profile cases ruined a young life too early, but the ‘grooming’ for a life of abuse and trauma by his own family, whose devastating impact I needed no suicide to confirm, having considered ending it all on numerous occasions after contact with his mother drove me to despair.

You see? All this trauma that I can delineate in depth? Practised description of a sad saga? No one was ever going to truly acknowledge our loss, we had no grave, no memorial service and no support from family and have not had any counselling because no counsellor could or would understand just how discriminatory attitudes to miscarriage and children are for disabled people. time when people don’t understand that it isn’t my job to mourn the person who committed suicide because I did all that mourning and communal grief when I needed to be mourning my own lost child/children. All this was stopping us from getting any grieving time and putting us back into very toxic contact with abusive family whom we had left for a very good reason.

I should never have had to mourn him  at all of course. Of course he should have survived. Atos and trauma don’t mix, we know that. And we care about every Atos victim. . BUT and here is the hard-hearted bit: I commemorate them solely because they are a DWP victim.  If it came to a choice of him or my daughter, who do you think I would choose? I’d be happy never to hear anyone telling me they are ‘sorry we lost him’ again.  The only reason I am forced to remember a group of people who chose their own toxic path in life and destroyed ours is because I cannot explain the tragedy of being unable to grieve MY child without explaining why the death of someone barely known to me prevented us from healing and caused our marriage to founder. This young man was only marginally less toxic for me than his family. NOT because he was cruel or unkind, in fact he was barely visible at family gatherings, but in trying to help him and by agreeing to move my own family to the area, I was confronted daily with the path my own sexual abusers had taken. Drugs and abuse. Abuse and drugs.  The very same drugs too and after his sister had proved how susceptible the family is to narcotics abuse.

He chose drugs to medicate his pain and from peer pressure and he got unlucky.  And for someone with my particular PTSD triggers the juxtaposition couldn’t be more vile. Sex and drugs, abuse and drugs. In the run up to Christmas or whichever holiday you celebrate if you are turning to someone in a crisis would you choose someone you haven’t spoken to for over 2 years or longer to dump your troubles on even if you knew that what you were going to tell them would be BOUND to bring back terrible memories? Would you dump stuff on them even though they are trying really hard not to think about things and to have a normal Christmas? Personally, I’d go to people I would usually turn to in a crisis, before I attempted to vent to someone who had to pick up similar pieces before and who really would happily never have had to do so again. I’d ask you if it is OK to vent on a particular topic. I’d maybe even realise that this person’s own equilibrium might be too fragile to hear about stressful and possibly triggering stuff. I wish I had told the two people most responsible for bringing back things best buried to shut up before they ever said anything.

I am not mourning an abuser or an abused person…. . I am mourning my daughter and if I can’t have a Happy Christmas, I can at least have that.  I don’t think I shall ever discuss suicide without someone else mentioning it first again. I do not want to be like that person and ruin a happy time….

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Loss, tragedy and how volunteering doesn’t ‘make it better’.

As a person who got involved with this group because like so many others I was appalled by the footage of Aylan Kurdi (and many other children) I’m appalled that so many people some of them with families are struggling to stay focused on the main event I really don’t understand it. I spent my 38th birthday (which should have been my daughter’s second birthday) at B- H- sorting clothes for teenage boys no different from my dead nephew who killed himself a fortnight after tragedy had already struck us once. I spent the weeks leading up to what should have been Chris’s 24th birthday (the 29th) blessedly glad to be surrounded by baby-clothes because I never had my own chance to mourn because family death after family tragedy kept hitting us thick and fast.

Tragedy taught me this: In September just after my birthday in 2009 several years after I married, I spent my time alone on a beach in Greece wondering what had become of my marriage, my future, my health and my sanity, as I contemplated ending it all and letting that same strong current we see in all the pictures of folk struggling to keep infants and children alive, wash me out to sea. In the event I threw my wedding ring into the sea, half in frustration and despair , half superstitiously as a propitiatory sacrifice to whatever God or gods might be watching over a failing marriage. However passing over the events that led me to contemplate suicide and which come back to me whenever I see the heartbreaking beauty of the Greek islands as such a backdrop to far deeper suffering than I could ever imagine, I’ll just say that things did not ‘get better’ for a very long time and indeed it took THOSE deaths; the death of two close relatives and an even more personal loss to finally ‘resolve’ the issues that had had me in such turmoil by severing any of the family ties that bound me to that situation by taking away the person who should have been central to the tragedy from the beginning. Chris slipped away, quietly, apologetically one winter’s morning after years of silence in the face of family bickering by those I hesitate to call ‘adults’ who should have taken care of him. Thus it was only justice that I show up for his funeral even though the timing was personally horrific for me. It’s called: adulthood.

I have family, Not ONE of them has ever said they were sorry for our loss. I have friends and only one rallied round. What by comparison have these folk got? I’m not saying we will stop doing anything or stop collecting or donating. BUT what we_are_ in grave danger of doing is denying people support and making them suffer in silence while we focus on our own concerns. It seems to me that we need to sever ourselves from the convoluted part of the struggle and remember that real tragedy and suffering is no game, death is real and it is REALLY happening. It is not ‘just’ something on a screen or to be dramatised. People JUST like us are suffering real pain.Would we really want folk to feel alone for one second tat we could be helping? I think we all have a responsibility to crack on without drama for the sake of everyone who has ever had to attend a funeral on top of a bereavement on top of an injustice.

I’m not an admin in taht group. I’m not a volunteer refugee coordinator. I’ve packed a few things at B- H- and stored some children’s clothing in my flat, that’s all. But I need to divulge something and I hope it will make people think about why we started what we did and aimed to do what we do. I wasn’t there at the beginning and when ideas have been thrashed out I can’t claim to have been there either or to know what the politics behind the scenes might have been like. Due to health reasons I would probably be of limited use in Calais or Croatia or any of the places the refugees are and I probably seem to be of limited use on the ground. BUT I don’t need reminding why we are here. None of us do. Can you even imagine what it is like to have to read these posts on the morning of a parent’s funeral or on a significant date from a grieving point of view? When you remember a relative’s funeral you remember all the unpleasant things that happened at that time. Grief makes any focus on world tragedies hard and you never forget what tragedies happened whilst you yourself were grieving. You also remember your own tragedy whenever the subject of those ‘parallel’ tragedies comes up.

I gave up having live TV about two years ago though it seems much longer for many reasons. I found it absolutely gut-wrenching whenever the BBC showed footage of a Syrian conflict that I did not really understand because you don’t need a politics degree to realise that death is all around when you have just been struck by appalling circumstances yourself. I  found it almost unbearable whenever I saw footage of a dead child or of a hostage situation or footage of a mother who had neglected her children: all stories which were in the news at that time. Does anyone else remember that pitiful row of pushchairs after the attack on the shopping centre in Nairobi or the footage of the house in which a child’s mummified body had been left by its mother? I do remember. It was September and October 2013 and that I told my husband I could not and would not have live television again because if I had to see another dead child it would kill me. In fact as I check, I find it was two years ago today that I saw footage of the house in which four-year old Hamza Khan was killed by his mother and left to mummify, images of a squalor against which not even the Calais Jungle can be called ‘squalid’. Google the case and the BBC weblink tells you that these are ‘shock images’ but I had no such warning when I turned on the television two years ago today as a newly bereaved parent.

My grandfather was in the Merchant Navy in World War Two and my grandparents to the day of their deaths gave to the RNLI because they understood how short a time even a fit adult can survive in the North Sea -or any sea. Fifteen years ago on the first day of our honeymoon my husband and I nearly drowned in the strong undertow off one of the Greek islands: when you see a six foot one, eighteen stone man swept off his feet and pulled down by the undertow and boulders the size of your head are washing around like pebbles you know you are in real trouble. Somehow, my husband got us onto firm ground and all we lost was his wedding ring which slipped off as he grabbed for me. I can’t help feeling that something has come full-circle for me thinking about all the tragedies of the wine-dark sea and asking myself whether this is really the time to be thinking of my own sorrows when others are not waving but drowning.

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‘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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