The Dead Can't Give Permission by Julia Jones

This is the story of James, a man in his sixties, living with Asperger’s and impaired vision. James is an only child who has lived at home all his life, except when he was away as a teenager at a school for the blind. He has also left home on occasion to be involved in quiz programmes. His mother, Margaret,  suffered kidney failure so, from age 13, James helped care for her in the school holidays when his father was at work. Then, later, when his father also became ill, James was glad to look after them both. He underwent some eye operations which improved his sight. They were a very happy family.

James’s mother, died in 2017 and from that time James and his father seemed to become objects of suspicion to Social Services. This culminated in James’s father being forced into a care home after he had been admitted to hospital with an attack of gastro-enteritis. 

As I listened to this part of James’s story my heart sank – I have heard too many long sad tales from people who feel that their relatives have been stolen from them, refused a return home from hospital and forced into residential care when some small hiccup disturbs their private equilibrium. James’s visits to his father were restricted during this period, for no clear reason. Many people at this point find themselves involved in Safeguarding Enquiries, Best Interest Meetings (where the bewildered family member finds themselves surrounded by professionals often talking jargon) and Court of Protection proceedings where the family member may find themselves acting as their own lawyers, again ringed round by professionals and paying fees for no clear reason. 

Somehow, James and his father (Jimmy) escaped and resumed their life at home together – with a bill for £2000, which James 5 years later, is still refusing to pay. There were other minor impositions – carers sent into the home every evening to put Jimmy to bed at 6pm despite the fact that he liked sit up with James until 10pm – and more bills to the family for these unrequired services. But essentially the two of them managed to continue their quiet, affectionate existence until Jimmy died.

‘I cried and cried and cried’ says James. He still dreams of his father and wakes crying. He has both his parents’ urns in the house with him. He hugs them. James misses Jimmy and Margaret every day and has changed nothing in the house where they have lived together since 1978. James lives with Asperger’s Syndrome remember; he has to find his own, unique way to cope with daily life. 

After Jimmy's death, James experienced deep depression. Statistically he was probably at risk of suicide but instead he went swimming. There was one particular day when he swam and swam and swam, length after length of a local pool until somehow, he says, he swam his way out from his depression. Now he has constructed a daily routine for himself which includes swimming every day (in a lake, a river, a marina as well as the indoor pool) and tea ‘with’ his Dad at their regular time.

James has had many operations to improve his eyesight and now, though still severely impaired, he is able to maintain his independence and find his way around safely by using a Tom Tom. Imagine his delight when he heard of a scheme  whereby the Tom Tom voice can be replaced with one personal to the user. People in danger of losing their voices (though an illness such as MND or oral cancer) can ‘bank’ their voices for the day when they need adaptive technology. James had saved MP3 recordings of his parents so wrote at once to the charity running the scheme. He wanted to know if his parents’ voices could be programmed into his Tom Tom so it would be their beloved voices helping him find his way around. Yes, said the charity, technically this could be done – but James would need to obtain his parents’ permission.

And the dead can’t give permission.

I visited my parents recently
It was very comforting.

I have not changed the names in James's story as he told it to me as a true record of his experience. I really liked James and felt great respect for the quality of his love and sorrow. I also felt anger at the manifestation of bureaucracy that required this signed permission slip. I was also interested in the moments where I listened and wondered whether this was a 'normal' family. I realised then I was behaving exactly like the social service conformist police. If someone had told James that by caring devotedly for his parents during their lives - and being loved by them in return - he was laying up loneliness for himself in his older age, would he have chose to behave differently? I don't think so. 

As this is a literary not a campaigning page I would like to share one of my absolute favourite childhood poems with you. It's by William Wordsworth and was published in the Lyrical Ballads in 1798. I read and reread this poem as a child and would like to dedicate it to James as he continues to have his tea with his dad every day.

We Are Seven

———A simple Child,
That lightly draws its breath,
And feels its life in every limb,
What should it know of death?

I met a little cottage Girl:
She was eight years old, she said;
Her hair was thick with many a curl
That clustered round her head.

She had a rustic, woodland air,
And she was wildly clad:
Her eyes were fair, and very fair;
—Her beauty made me glad.

“Sisters and brothers, little Maid,
How many may you be?”
“How many? Seven in all,” she said,
And wondering looked at me.

“And where are they? I pray you tell.”
She answered, “Seven are we;
And two of us at Conway dwell,
And two are gone to sea.

“Two of us in the church-yard lie,
My sister and my brother;
And, in the church-yard cottage, I
Dwell near them with my mother.”

“You say that two at Conway dwell,
And two are gone to sea,
Yet ye are seven! I pray you tell,
Sweet Maid, how this may be.”

Then did the little Maid reply,
“Seven boys and girls are we;
Two of us in the church-yard lie,
Beneath the church-yard tree.”

“You run about, my little Maid,
Your limbs they are alive;
If two are in the church-yard laid,
Then ye are only five.”

“Their graves are green, they may be seen,”
The little Maid replied,
“Twelve steps or more from my mother’s door,
And they are side by side.

“My stockings there I often knit,
My kerchief there I hem;
And there upon the ground I sit,
And sing a song to them.

“And often after sun-set, Sir,
When it is light and fair,
I take my little porringer,
And eat my supper there.

“The first that died was sister Jane;
In bed she moaning lay,
Till God released her of her pain;
And then she went away.

“So in the church-yard she was laid;
And, when the grass was dry,
Together round her grave we played,
My brother John and I.

“And when the ground was white with snow,
And I could run and slide,
My brother John was forced to go,
And he lies by her side.”

“How many are you, then,” said I,
“If they two are in heaven?”
Quick was the little Maid’s reply,
“O Master! we are seven.”

“But they are dead; those two are dead!
Their spirits are in heaven!”
’Twas throwing words away; for still
The little Maid would have her will,
And said, “Nay, we are seven!”

Comments

Jan Needle said…
What a wonderful mixture of human kindness and human cruelty. When will we ever learn?
Griselda Heppel said…
What a sad story which raises so many questions. I wonder if James made it clear in his request to the charity that his parents are dead? It may not have occurred to him, and thus he got a standard reply. If he did tell them, then he got an idiot jobsworth answering him, because there must be a way around this. But awful for an autistic person on his own to have to fight such battles.
Julia jones said…
Yes, I feel inclined to have a quiet ask...
fiona flynn said…
Please ask. There is something quietly but lethally toxic about the preoccupation with “safeguarding” and how it’s used in a managerialist way to restrict and obstruct. It’s endemic.
Lydia Bennet said…
As usual Julia your piece is compassionate and moving, though it makes me so furious... it seems that a certain type of person can be attracted to some of the 'caring' professions, basically in search of power and control and an outlet for sadistic urges. You do so much good work, as all know who've followed John's Charity and the fight for the rights of care home residents.
Unknown said…
Very moving and surely the dead give permission all the time. If they left wills there should be an executor of those wills and if all their property was left to James then their voice recordings were left to James and the executor could give permission on behalf of the estate for the recordings to be used in this way. Recordings of famous people after they are dead are presumably dealt with like this? If they did not leave a will then the same might still work. The Charity would ask James as the heir for permission to use the recordings, in that sense the dead can and do give permission.
Ruth Leigh said…
What a moving piece, Julia. The last few lines made me rage.

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