(Letter first published in the Guardian, Tuesday 8th October 1996, headline by the Guardian Newspaper)
If anything matters in what you read below, it is the fact that so much has not changed. This letter was written 21 years ago and five years after the death of my daughter.
The letter was triggered, incidentally, by an article about screening for handicap and terminating foetuses where handicaps were discovered:
For the four-and-a-half years of her brief life I was proud to be the father of a beautiful but massively handicapped little girl. She was blind, incontinent, incapable of speech or verbal comprehension, and totally dependent upon others. She never knew my name, but she came to know my grip, my touch and my voice, and loved me as she never loved another.
The hardships devolving from her care cannot adequately be described but are perhaps summed up in that one long, terrible night when I started, semi-conscious, from my bed convinced that I was dead – that I had been for years, and that I was in Hell.
Could screening have prevented her birth I would have been spared a great deal. But I would have missed and lost far more. I wish she was with me still, and were I presented with the prospect of another, identical child I would not hesitate to fight again for the preservation of its precious life.
It was not her handicaps which created Hell in my life. All she created was love and joy. It was the society we lived in which handicapped us. It was a parsimonious State and the prejudices of the short-sighted. It was the meagreness of benefits, the inefficiencies of over-stretched hospitals and the lack of adequate respite care.
It was the people who prayed for help on their knees but delivered none on their feet. It was the sanctimonious mewling of middle-class advocates of abortion for handicapped foetuses and all those other inadequates who saws handicap solely as a problem to be solved rather than a challenge to be met.
What of her life? She – my Jenny – knew pain, but she also knew joy and in no small measure. Her pain could be moderated through medicine, and her life and joy were a fluttering, incandescent flame that brightened and warmed the lives of many others.
I can understand how some, faced with the reality of society as it is, might choose to avoid the battel of being parent to a handicapped child. They have my sympathy. But the route of ‘screening out’ handicap is, to me, the advocacy of genocide of the defenceless by the misguided.
It is 31 years since my daughter, Jennifer, was born. It is 26 since she died.
There was no Facebook when she died, no Skype, no real facility to share without turning to the conventional media, to the journalists and publishers whose primary concern would always be ‘the story’.
When our daughter died and we were interviewed by a member of the local press, I was ready to thank a great many people, including medical staff, for what they had done. I was also ready to make certain criticisms, to tell some of the stories that were often not told, but my then wife wanted no part of that. Jenny was dead and a warm cocoon was necessary for my wife to survive that (though she didn’t, anyway) so we were to say nothing that might cast a chill. And while she was alive there were certain things we only ever shared with fellow-sufferers because you have to be very careful about pissing-off people that you depend upon.
My silence persisted. My marriage broke down in the aftermath of our own little girl’s life, I became a single parent with other things on my mind. The parents of handicapped children who had been our friends dropped away from us, faced with the cruel reality that our lives were made easier by the very death of our daughter. Life took me to a different part of the world, to different priorities, different needs, and I felt a sense that my knowledge and experience must surely be becoming, anyway, out of date?
Surely, I thought, things must have moved on? Hospitals and medicine must have got better, understanding must have developed, progress must have been made? But whilst some probably has, too much, it seems, has not.
The Charlie Gard story, and others in recent times, have reminded this old-stager that an awful lot has NOT changed. People are still struggling with the same issues we struggled with a quarter of a century and more ago.
Check out, for example, this item by Sam Carlisle
So here I am. Watching, listening, and ready to speak out, ready to share in the hope that my doing so may help others who are still in the throes of suffering.
And if you are inclined to, don’t thank me. I am writing about what is for me water under the bridge. None of this is ‘about’ me. It costs me nothing – my little girl and I are beyond any petty revenges, so I am free to say what I think needs saying.
Agree with my posts? Then please share them. There are some dark corners that could benefit from the spreading of more light.
Affected by anything in them? Please contact me. I am listening.
In an earlier post some time ago I asked the question; is there any point in continuing? Is writing (in my case literary historical erotica) worth the effort?
I have decided it is not. I have quit. Called it a day. Called it a night. Whatever phrase you prefer.
And it has proved to be a weight off my mind. The clamor (clamour in English English) of the marketeers, the people telling me how brilliant their next must-read novel is, the people telling me how easily they can splurge my name/my books across Twitter and the internet, is all gone. It has suddenly gone quiet.
I am not going to spend another six months, year, two years, three, investing effort into a manuscript, creating, writing, editing, re-editing a work which, on publication, will be worth less to the average reader than the price of a Starbucks or a piece of cheap, made-in-China tourist tat.
Nor will I ever wait anxiously in case the next review is written -as was one of my very first – by a loser who thought she had a score to settle, or by someone who struggles if there is more than one comma in a sentence.
Nor will I worry that any success I might achieve will be undermined by plagiarism or naked piracy.
To rest, now. Very soon I will change my tags on here, and considerably more, and all you are likely to find here will be photographs, predominantly of birds and squirrels, the odd observation on life, and small scale representations of the art work I plan to focus myself upon. I can draw, I can paint – kind of, and other things, and none of them require the effort or the time that is required by writing.
Yet how many folks, I wonder, will offer me – for a watercolour, an oil or a drawing – less than the price of a commercial coffee?
Take care now.
Brilliant. Is anyone listening?
Join us: www.fb.com/unitedhumanists
Ultra-rich man warns his fellow American millionaires and billionaires: “The Pitchforks Are Coming”
You probably don’t know me, but like you I am one of those .01%ers, a proud and unapologetic capitalist. I have founded, co-founded and funded more than 30 companies across a range of industries—from itsy-bitsy ones like the night club I started in my 20s to giant ones like Amazon.com, for which I was the first nonfamily investor. Then I founded aQuantive, an Internet advertising company that was sold to Microsoft in 2007 for $6.4 billion. In cash. My friends and I own a bank. I tell you all this to demonstrate that in many ways I’m no different from you. Like you, I have a broad perspective on business and capitalism. And also like you, I have been rewarded obscenely for my success, with a life that the other 99.99 percent of Americans…
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Watching you grow
From little pink frog
To upright consciousness.
Watching you glow,
Your first smiles
Your first steps
Your first words
First sneezes, first hiccups,
Your first recognition of ‘daddy’.
Changing your diapers
That the odorous is not odious,
Your little parts sweet
In their diminutiveness.
Giving you lifts, here and there,
Buying school clothes,
Lighting birthday candles
And blowing them out.
You all about me,
I all about you.
Your toys on the floor,
Your books on the shelves,
Your questions relentless.
Your voice a girl’s
Your choices a girl’s
Ballerina or tomboy.
Your vests and knickers small in the laundry,
Your panties, your bra,
Hanging with stockings over the bath.
Your looking in the mirror,
The coming of consciousness
That I am not the only one
Who thinks you beautiful.
And boys, then, and mistrust,
That any boy could be good enough,
That scares me no little.
No little worrying,
And then the big day,
If boys are your choice,
You at my side,
Your farewell to arms
That have held you since childhood,
Your welcome to arms
That may bring you to motherhood
Photographs and memories,
Framed in glass or framed in brain,
Now almost nowhere,
For daughter, alas
You died ere they could come to pass.
Rationally, now; not very emotionally, not in the depths of depression, I am asking myself if I should quit writing. It wouldn’t be easy, I know, but I do have the capacity to ‘walk away’ from things if they become too great a threat to my peace of mind. It’s a habit I learned, apparently, from the father who walked away from me more than half a century ago.
The odds of winning the UK national lottery are, I’m informed, about 1 in 14 million. Not good odds. But then, it seems that Amazon hosts some four million e-books and, to me, 1 in 4 million doesn’t actually sound all that good either.
I’ve had two books published, of course. “Aphrodite Overboard” and “Islands”. Both have had some excellent reviews, in fairness, but it’s a long time since I heard anything about “Aphrodite” from her publishers, so it’s pretty clear she’s not selling, and the publishers of “Islands” have just offered to return the rights of the book to me. Seems it sold a whole two copies in 2015.
Writing in support of a particular Weltanschauung, or world view, my books have not stuck to one theme and nor, indeed, do my works-in-putative-progress. To the heterosexual castaway Aphrodite, the Lady Susanna, elevated to the status of goddess, comes routine cunnilingus from male and female worshippers, and endless intimacy with her lovely female acolytes and the man she ultimately marries. To the hetero Tom Carton, of “Islands” comes the affection of a co-castaway, a young, gay sailor, in a gentle touch of m/m, and an equally deep and profound affection for a liberated, black, female slave. MF/FF in the first, MMLite and MF in the second.
If my WIPP “Sword” novel comes to fruition it will be a historical action adventure, set in the early 1700s, with intimate MF and FF interaction, whilst that which I shall for now call merely “Angel” is a mid-19th century Victorian story with a fundamentally FF base.
So they don’t really hang together. Even if one of the few who had read “Aphrodite Overboard” were motivated by it to look for something else of mine, they would not necessarily look in the direction of “Islands”.
Where, then, from here? I could take the highly recommended Indie road, of course, but it’s a fact that I haven’t a snowball-in-Hell’s chance of being able to pay an editor or anyone else to write with me. And if I go it alone the fundamental facts remain the same. I have two novels which, given my own impostor syndrome, may not actually be that much good and which may, anyway, if various kind folks who have referred to them as ‘literary’ are correct may be too literary for the bulk of an audience which – according to one of my publishers – is quite content to settle routinely for work she describes as ‘sub literate’.
It doesn’t matter that my Weltanschauung is Feminist, pro-LGBT, pro sex, pro intimacy, pro kindness and all the rest.
So, is there really any point?
Chained to his balls
In a prison called ‘Man’,
What do they see
Who call him ‘free’?
Wage slave, unmanned,
To a glossy treadmill tied,
Or mortgaged to a private cross
With the strange pink tail,
Imprisoned in a maze called ‘Man’
Who ought to wonder who are these
Who envy him the scraps of cheese
That are the mouldy recompense
For life that does violence
by Richard V Raiment.
Exposure used to be the treatment/cure, but the world has evolved to be exposure-resistent. Exposure is like tossing regular penicillin at flesh-eating MRSA and expecting it to work.
Q: It is easily aroused, can maintain an erection, make a female pregnant and can hold its own in a fight. What is it?
A: It is probably a dog.
Q: It is easily aroused, can maintain an erection, make a female pregnant, and cannot resist its need for sex. What is it?
A: It is a dog.
Neither of the statements in the questions above defines a man. Having sex does not make a boy a man, it makes him a boy having sex. Dogs can have sex. Rabbits can have sex. Snails can have sex. If you want to be more than a dog, more than a rabbit, more than a snail; if you want to be a MAN you need to be capable of much more than having sex.
A well-trained dog understands the word ‘no’. You are less than a dog if you do not understand the word ‘no’.
If you can get a girl to do something she really does not want to do, it does not make you a man, it makes you an abuser, and an abuser is worthless and despicable.
You will never amount to anything, never ever be a real man, unless you can respect yourself, and you can only respect yourself if what you do, every day and to everybody, is worthy of respect.
Be able to like yourself. Then, maybe, you will become a man.
“I don’t know how you can cope.”
They stood by my daughter’s hospital cot and shook their heads. Parents/carers with their own children receiving attention, some for epilepsy, some for infections, some for bone breakages or burns.
She was massively handicapped, had a cocktail of problems that nothing, in the end, but death could cure, and our hearts were broken.
Down in the waiting room, the one place you could smoke then, I listened to a woman rant at her husband about the delay they were having, waiting for a medic to get back to them about her daughter’s broken arm.
A broken arm? Part of me thought. Jesus, what’s that?
And then it struck me. This was her child. There was no scale of bad-to-terrible for her, it just hurt, and hurt and hurt.
She wasn’t making an unnecessary fuss. She was simply grieving.