True Choice is Optional

When I tell sympathetic people the rubbish some people come out with about disability, people ask me, “Where do you find these people?” They are just ordinary people, sisters, mothers, co-workers, strangers, teachers and shopkeepers. Sometimes quite nice people who in every other way are intelligent, compassionate and educated. But I’ve heard things most people wouldn’t believe anyone could say to another human being.

Disabled marriage was never _officially_ frowned upon in the U.K. although individuals, families, carers and Social Services could and legally can interpose their objections when they see fit. So although the idea that I would not cope with _marriage_ was never specifically broached, though after we married I found that individual after individual would praise my husband to my face for ‘putting up with me’, ‘managing me’, and ‘not minding having to do all the housework’ being young and with too few opinions of my own, I put up with it and the steady drip-feed of implication that my husband was a saintly carer for a useless cripple whose only function was to provide a foil for his noble self-sacrifice and be a drain on his resources- oh and be jolly grateful for his charity.  Eventually I got up the courage to tell people that actually I was the one who managed the housekeeping, laundry, online shop and budgeting not to mention actually being someone that my husband _enjoyed_  spending time with. They didn’t listen of course- it is a truism of cerebral palsy that people seldom do listen, even if you are a Masters graduate a writer and part of a family in your own right.  Last month, I caught some woman asking on a forum for teens with cerebral palsy most of whom were depressed about the prejudice they face and their life chances, a very unfair question; whether they thought she should have her newborn baby’s life support switched off because the doctors wanted her to make a decision given the baby had CP and ”what did they think she should do?” Tactless but in the midst of heartbreak we do things that horrify us in retrospect.

When we got married, the vicar (a friend of my mother’s) told us he could leave out the ‘procreation of children’ bit from the marriage service. Not that we asked him to, we planned on children, but, there you go, he assumed we would want to leave it out. On reflection we should have found another vicar or INSISTED they KEEP IT IN to remind people that we too can have children and live our own lives. Compared to friends whose vicar refused to marry them in church who had to marry in secretAt the time I was shocked but too busy with wedding preparations for it to really sink in and pre internet one did not have the networks and resources to say ”Did I just hear that?” So I chalked it up to ignorance and as pretty unbelievable in a world where at least those in power recognise that things like  gay marriage do not in fact deserve the opprobrium we gave them fifty years ago. Things improve, a little- and then they go backwards. Yet for some of us they have never progressed beyond our communities’ own prejudices.  My mother did not want me to have children, how other people with no medical knowledge whatsoever assumed it would be a bad idea and how I fell for it because the information we had on my medication and the risks to my health or a baby’s was incomplete.

In November last year we realised I was expecting a baby. However we lost her on 24th December. I wanted to mark her passing in some way- so I gave her a name, Helena Antonia. An ordinary tragedy and most people can just chalk it up on the family calendar as pain and sorrow and try again. But I was born with a disability, so it doesn’t work quite like that.  Before we had even seen a midwife, before we had really registered the possibility in our brains that something this amazing was happening a mere 18 months after we decided that prejudice and ignorance were immaterial, we were told to ‘make a decision’ before she was even born, refused to consider termination, then lost her anyway. We got on with hospital appointments four times a week and thinking up baby names and fielding elderly friends who tried to make me eat for two and finding new cures for crippling nausea when I failed to avoid “just another mince pie, dear,” and solutions to that issue that perplexes all able bodied family members of disabled people “How will you get the baby down the stairs?”

So we only cried in private when we discovered what was written in my medical notes and when we discovered that what our own GP had meant by ‘all the help and support you need’ amounted to pretty much nine month surveillance by Health Visitors followed by endless demands from Social Services to prove that we were capable or not child abusers and rocked in each other’s arms as we discovered other families who had been through what we would go through, that _yes_ they could indeed take our baby away purely because ‘someone’ thought I was a ‘risk’. And that someone so cold and hard and _bland_ could demand that we end something we had wanted for fifteen years. And all the time we still knew that we had a better than average chance of a miscarriage.

At least we tried. You see, to anyone born with a disability who has always been told they are somehow ‘not good enough’ to have children no matter how many exams they pass or responsible jobs they have, no matter how minor their disability or how ‘hands on’ their partner is, that CHOICE to ignore all the ignorant cold water and well meaning hints- to at least TRY is so VERY important- Having tried makes me feel so much MORE has happened in my life, that I have experienced so much more that I have been an ADULT woman and been TREATED as an adult woman but …. to be ORDERED to have an abortion on threat of adoption, threatened with a surgical procedure if I ‘left it too late’ when the tablet taken in a pre-surgical procedure is a self administered tablet which the drugs I had taken for the tumour for 18 years could be accomplishing in any case and which combined with my existing medication could lead to potentially fatal poisoning or haemorrhage.

We tried, the midwives tried, even my sister tried to back me up. It would have been the best of the last 18 yrs whether she lived not at all or for one day, but they had to make it bitter as gall. And even that would matter a lot less if we had not had news of our nephew’s death by suicide the same week. As for Social Services and the GP., I realise now that the Doctors threat that they ‘might’ take our baby and could ‘give us no guarantees’ meant that they might have tortured us with threats and false promises for whatever time we had with her. But somehow, despite the tears and the fears, the pain of finding out that the Dr. was trying to use my past my mental health as an excuse to force my hand when for YEARS they had used my physical health as an excuse to do nothing and when I know that other friends have been put through the same or worse because of the same disabilities.

I was more prepared to face prejudice than my husband. As an able bodied man of an era when people were at least polite and less direct in their nastiness, he finds all the disability hatred so shocking, but it never went away, just underground. When the blow fell, I was very cool and calm, as calm as I have ever been in my life- I was fighting for a life, so…. I simply kept saying ‘No’ to the Doctor until my husband came out of his trance of horror. I said: “No, we are here to sort out safe medication for the pregnancy and to book a midwife,” The doctor pushed a pile of papers at me to sign, I said ‘No’ and David said no, and she just looked through him as if he was not there.

After a few moments he said very softly and calmly, “No-one bullies my wife.”

I said ‘I want to talk about what medications to change to go ahead safely with the pregnancy not whether we want to keep the baby’.

Not perhaps very strong, but I have never been so calm.

I stayed that way until about a week after our nephew’s funeral. Then our usual GP said I “needed to grieve” and that seemed to open the floodgates. But frankly, am not grieving a death or a miscarriage am grieving a generation of evil and 18 yrs not trying to have what we wanted, the hypocrisy of our families who insisted I stay on the Pill while my sister and brother started families. Most of all I am grieving that I listened, that I waited for ‘permission’ to become an adult.

But we do not live our lives “by your leave”. We hack them out of a wilderness of prejudice and ignorance burying our hopes as we go.

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Silly little Cripples: This is a Brave New World

So apparently according to a Dr writing in the Guardian today, ‘outrage over allegations that doctors have apparently been using the coronavirus pandemic to write off whole swathes of vulnerable patients has been painful to witness.”  because those nice Drs really DO want to save cripples after all. ”We initiate DNACPR discussions with patients when we fear CPR would be futile. We do so as an act of respect and kindness. We are trying to put you, our patients, first. I have held this conversation hundreds of times – always endeavouring to act in your best interests.”

Well, ”best interests” strikes a bum note for a start. How patronising. Oh gosh, sorry your feelings are hurt that you had to watch the NHS telling us we were not worth saving. Sorry you had to witness that. How fucking traumatic for you! Our lives are in danger – how dare we! Oh and it is OK because they were just ”rumours” that this was happening elsewhere. No disability activist would already have the FACTS a random Guardian commentator  would have, or even an ex Dr. ”hostility is invariably unleashed by fear – and in these locked-down, revved-up times, fear is as contagious as coronavirus itself.” Well excuse me, but the very FACT that in the UK the decision to place a ‘Do Not attempt CPR’ can only be placed by a Dr, that just as with abortion the patient is only allowed to say ‘no’ not ‘yes’ to life is all we need to know.

‘Fear?’ ‘Hysteria’? ‘Hostility’? When the people who have had years of hostility are disabled and disadvantaged people how DARE she make Drs the victims of the patient! BLAME THE GOVERNMENT! Because people outraged that elderly people are dying isn’t what I’ve seen -in fact people are not outraged ENOUGH- and the majority of the activism work has been disabled people under 60 who were also sent those letters or flat out told they weren’t to call 999 because they have CP or MND or a life limiting disease. But no…we dreamed it. Obviously. I agree the NHS is doing what it always did – it has in fact ALWAYS treated disabled people with more contempt than less vulnerable patients. It has ALWAYS left us to die sometimes in appalling conditions. And yes, the Govt.are doing what they always did – after all the Tories have been culling us for some time now perhaps 600 a day perhaps more were dying when the policies of abiuse were commonest. ! But please don’t imagine as so many of the RIGHT do taht we can only get it from the papers. We get it first hand. and no, we did not ”perceive” it, we were not misinformed or hysterical, it happened. A friend of mine – a few friends – really were forcibly sterilised. I was told to have a termination – or else – and now we are being told to make way for younger fitter people. Baby Alfie and my friend’s lovely Eilish didn’t live to grow up primarily because the Court of Protection overruled their families because because they were deemed too expensive. And if this writer cared to look it up she would see that the rules on ending the lives of those who are nowhere near the end of life have been massively changed since 2017.
The fact that my CP was caused by clinical negligence proves NOTHING I suppose!
No this is this is not my nose neither and nothing that it is so is so!
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The Rest is Silence ….

The eugenic language that has threaded through article after article these last three weeks has NOT been neutral or impartial. There has been praise for consultants who promised that disabled and elderly Covid19 patients deemed to be ”fragile” would _not_ be given so called ”useless treatments” or resuscitation. Let me be very VERY clear. I and many others woke up last week to the Governments published advice for those who need to self isolate. Amongst that information was a link to a government web page which told us we were already listed as vulnerable or extremely vulnerable and had been pre-registered for ”support” Now, given Boris Johnson had been cutting the existing social care support so that friends with possible Covid19 symptoms have already had to manage their illness with no or reduced support this seems odd. That I had already been put on a LIST of people who if they have symptoms should call the NHS and be prepared to be admitted to hospital would seem reassuring to someone who had not already once before found herself on a pre-prepared and decidedly eugenic list with no notice with the excuse that it was NOT my cerebral palsy taht was te reason I should not have children. It is then no surprise to find that the NHS regards people with cerebral palsy (CP) and autism (and many many others) DO need a advanced directive because we have those same disabilities. I am to arrive at hospital not with not my medication, or medical records so that they can best support me as people undoubtedly assume from those promises of ”support for vulnerable people’;” but a plan – of how I wish to die in the event of presumed worsening health, wishes that could be written on a cobweb which can be overturned if the Drs consider it to be ”in my best interests”.

This policy based on something called the ‘Fragility Scale’ has since been questioned by many disabled activists with more energy and chutzpah than me and the National Institute for Clinical Excellence Covid guidelines have been altered (slightly) so that younger disabled people are now seen as more viable. Which leaves a lot of older (whatever that means) disabled people -our elders, senior activists and stalwart humans up shit creek. I think this disposes of the myth that disabled people asking for equality ”’want special treatment” We want a quality of life – or even a LIFE not founded on assumed quality of life. My disability did not affect the QUALITY of my life it HAS affected the quality of how I am treated by society. My disability did not make me a target of abuse – abusers did that. My disability did not make me incapable of choosing the kind of family life I wanted – abusive and controlling parents did that. My fertility was controlled not by my ability to raise a child but by eugenic decisions made by folk with preconceived ideas. Ironically I’m gay. Ironically I don’t always look in the mirror and think ”woman” but I DID start out with the odd idea that I had value as a human being and while my trust taht this is so has been eroded over time my BELIEFS cannot make or break reality. If I believe the world is flat can my belief make it so? Or if I believe the Covid curve will flatten can my belief make it flat? I remain human to matter whether abuse as a child or an adult has taught me that others see no value in me.

Look. It’s not that I think I’m special. Or more deserving or but I think dying for my country’s good should be MY choice. I haven’t had the chance to meet that many people in this country and certainly I have not met many people in this COUNTY worth dying for. Am I to die so taht my 50 year old lawyer sister in law can have a respirator even though she will probably drive more folk with bipolar to suicide? Am I to die so my partner can have a ventilator because he may possibly find work in the future although his mental health is little better than mine? I think that whatever our differences and squabbles down the years, I might possibly do that however I think we would probably fight long and hard over who gets to make such an ultimate sacrifice. It is not that I ”want special treatment” but rather that I and all other disabled people deserve EQUAL treatment whether in natural disaster, in wartime or at peace. The WHO and the UN agree this and the UN Convention on the Rights of People with Disabilities agrees it. The National Health Service and most health systems claim to treat people impartially be they a drug dealer, an addict, a paedophile, a murderer or the ubiquitous ”hard working taxpayer”. And God knows it must be hard to treat some of the folk in A&E on a Saturday night but it was always the boast of any NATIONAL health service that they are treated impartially. addict, dreamer, company director but NOT apparently dementia patient or disabled person.The UK is REFUSING people with CP ventilators and intubation so that in the event of Covid19 I will have betetr chance and better breathing support at home borrowing my carers CPAP machine. Should he be considered less likely to recover because he uses a CPAP machine at night? Or is he healthy because he does not have cerebral palsy or diagnosed Post Traumatic Stress Disorder – even though he certainly has some symptoms of the latter?

Cheer for the NHS and ICU consultants all you want but the NHS should not be a ‘Health Service only for the healthy. And if he UN has had to step in to remind the UK disabled people’s human rights don’t stop at ”a bit frail and needs help with housework Do Not Resuscitate.”

Eugenic if you want to, but this this lady’s not for burning:

As usual Shakespeare warned us. First the immigrants then us.
”….would you be pleased
To find a nation of such barbarous temper,
That, breaking out in hideous violence,

Would not afford you an abode on earth,

Whet their detested knives against your throats,

Spurn you like dogs, and like as if that God

Owed not nor made not you, nor that the elements

Were not all appropriate to your comfort,

But chartered unto them, what would you think

To be thus used? This is the strangers case;

And this your mountainish inhumanity.”

(The Play of Sir Thomas More) .

 

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The New Statesman is not wrong to Equate Roald Dahl with Harvey Weinstein.

Unlike this writer I could never ever read a Roald Dahl book to my children and I might even have chosen to take them out of class if a teacher did. In my opinion Dahl’s antisemitism may not seep into his books but as a hatred of all difference, of all groups that are mocked and a siding with all bullies even in the glee with which he describes revenge on bullies his books were the ‘classics’ despised by all of us who were great readers, sensitive, introverted or bullied at school or home. In the way Dahl mocks physical characteristics, traits he may or may not have considered quintessentially Jewish he nevertheless managed to endlessly poke at the underbelly of childhood fears and in the process arouse the fear of annihilation by abuse in the subconsciousness of anyone who later came to know how and why our cultural ancestry found itself wearing pink triangles or black triangles alongside Jewish victims of the Holocaust.
”“If a person has ugly thoughts,” Dahl writes in The Twits, “it begins to show on the face””
That phrase reflects a belief you can find in Shakespeare’s Richard III, in Chaucer’s Troilus and Criseyde, to Pacino’s ”Scarface” and modern Halloween costumes. The belief that in leads to ugliness and that therefore physical ugliness and deformity is proof of sin. The Latin phrase is ‘distortio vultus’ a medieval belief that only the evil are ugly and the good are beautiful and it is a bodyshaming and long lasting concept that predates even the medicalisation of disability has seeps still into our media and our cultural mindset. I find Dahl’s evil predictably banal now scatological, pointless and tasteless but the bone wrenching terror that had me hiding his books from my parents and not daring to tell them how much I disliked being read them or how much they played on my mind like a nightmare was the same terror that stopped me telling my spouse that his child-abusing, disablist, sanist ageist council fund embezzling adult sister had shamed me for being stuck on the toilet when I visited her and then _sent_ her small son to ask me what was wrong. Today, mental torture is conveyed through stolen online images of a classmate or a shared videos of ”happy slapping”’ or a gang rape filmed on a phone but in my own day this was the adult who seemed to be gleefully colluding in some half dirty terrifying secret game. Reading Dahl now tells you everything about the habits of an abuser. Dahl’s books replicated the very persecution you were living through with peers or adults who were scatalogical and disturbing relish while you squirmed sickened at the implied hate and were too scared to tell.
You had it tough is no excuse to hurt others be you Tory politician or ex public school writer. And you don’t pick someone from a similarly abused group to push down while you rise. You work at fixing the ills you suffered not dumping them on others. A bully a sneak an who covered being antisemitic with having ”lots of Jewish friends” and a terrible, terrible frightening writer for the other damaged and abused children of my generation whose parents often had NO idea that the sadistic treatment he describes with such relish was daily meted out to them while other kids got their ideas from a books that seemed to validate spite and petty revenges. So a fat- phobic disabled-phobic woman-hating twisted misogynist who went to a school lousy with abuse and then carried it on under the guise of being a ‘writer’ is just another bully who got away with it. I’ve met many a bully and a rapist and racist who claimed to be friends with people they abused, it is one of their commonest gaslighting techniques. To befriend people from recognised marginalised social groups is a handy cover for targeting the isolated and less able to protect themselves. We saw it with Jimmy Savile but Dahl’s medium worked inside people’s heads and could be tucked neatly into a schoolbag.
I have zero tolerance for any system be it public school, hobby or professional institution that produces mental wrecks – my own spouse got out of public school unscathed and with a healthy respect for all – and was promptly victimised to a near breakdown by people who I’d happily see in jail if I could. We lost a teenage nephew to suicide from child abuse. Had he had to read these books he would have experienced the same visceral shame and shrinking I did I am sure. What ”magic” did this man ever create that other writers could not do better? would not have spared us? Books about children living through persecution made you feel you weren’t imagining it all. As disabled kids learning about WWII, racism, antisemitism confirmed gut feelings about how persecution works which otherwise what was going on had nothing said about it. If he did not learn from tragedies he was just the usual jumped up over privileged under bred scum the system produces in shed loads and then gives awards to while their victims squirm and rage. This writer is not wrong to equate him with Weinstein.
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