Thursday, February 18, 2010

Mercy killing? Never. I'll always fight like a lioness for my darling boy

Victoria Moore from the UK's Daily Mail wrote an article about Elisabeth Shepherd who has been caring for her 36 year-old son James since he was 8 years old.

Shepherd contacted the Daily Mail after they published articles supporting Kay Gilderdale, who was acquitted of attempted murder in the death of her daughter Lynn.

Shepherd stated to the Daily Mail:
"Your admiration for the mother of Lynn Gilderdale frightens me. Across the hall from me is a young man. His name is James and he is my son. Quadriplegic since the age of eight, he has no controlled use of any limbs, nor even a finger tip. If his nose itches, he has to holler for help.

Like Lynn Gilderdale, he envies those who roll over in bed with ease. Sadly, we've had the "who will ever love me?" talk more than once, and when my dear daughter gave birth to her first child there were tears of sadness for James's lost opportunities mixed in with those of joy at new life."

The article explains the concerns that Shepherd has for the life of her son. The article states:
Her account of the ups and downs of life with James was immensely moving. But there was something else, too: an impassioned desire to provide a balancing voice against those whom she felt may -- following coverage of the Gilderdale case and the impassioned support that a number of personalities have shown for assisted suicide, such as actress Brenda Fricker who revealed in an interview this month that she was one of the 29 Irish people who have signed up to end their lives at Swiss clinic Dignitas -- be viewing this matter too lightly.

Shepherd then explained why she is concerned for her son. She said:
'been at the place where I've considered helping James and myself to die. It's this close involvement in his care that convinces me that we must maintain the protection of the courts for people like my son, even from me, his mother'. ... 'My fear, ' she says, 'is that if people begin to think of assisted suicide as an option then the balance will change. As a society, we will shift towards a different mindset. A mindset in which people like James begin to appear expendable.

'I also fear it may mean that people like James begin to feel that being such a burden on a carer, who is very often a close relative, is a choice they are actively making by not committing suicide. That guilt may be enough to tip the balance into them taking their life.'

The article explained that:
James was an ordinary, healthy boy until November 29, 1981, when he went out with his father and older brother, Paul, to buy some sweets. He was standing at a crossing when a driver leaned across to the passenger seat of her car to add an item to her shopping list, mounted the pavement and hit James.

To care or not to care:
Doctors warned Elisabeth that the chances of her son ever regaining enough consciousness to recognise her were virtually zero.

They kept trying to tell me how severely handicapped he was. They told me he would never speak again.

They advised me to put him into ward care where they thought he would last about a year. All I knew was, all of a sudden, I had really become a mother. I was a bit like a lioness. I couldn't leave my young. He was warm and pink and I could touch him. He still felt like my child.

AND three-and-a-half months after the accident, a miracle occurred: Elisabeth noticed James moving his head and then, when a disbelieving doctor came to examine him, James reached up with an arm, pulled the man towards him, and gave him a kiss.

Elisabeth's marriage broke down
'James's father left not because he didn't love him, but because he did, and he was in so much pain'. Family life, of sorts, slowly recommenced and two-and-a- half years after the accident, on a visit to a safari park ('we used to prop James up in the back of the car between sandbags and the other children') he uttered his first word: 'zebra'.

Today James and Elisabeth share a home. She works parttime as a ceramics restorer ('I do not claim income support') and is his principal carer.

James lives an active life:
But it's clear Elisabeth ensures he has as active a life as is possible. Despite his restricted movement, he recently swam a length to raise money for charity.

She takes him bowling, to archery, for rides on a specially designed bike. In his room there are Harry Potter books, shelves of ceramics he has made using a mouth-stick, a photograph of him sitting proudly beside the vivid mauves, cerises and pinks of a shock of sweet pea plants he exhibited in a local flower show.

They're much healthier than any I've ever managed to grow. 'Did you use tomato feed?' I ask, as he watches from his wheelchair, proudly wearing a red Liverpool FC shirt. 'My grandma always says that's the secret.'

He animates immediately. 'I used tomato feed,' he confirms haltingly and then, bringing us back to the point, 'I had an accident when I was eight.'

What does it mean to be human?
Elisabeth worries that in the debate about assisted suicides we are in danger of corrupting our idea of what it means to be human. 'I do believe in a God, but my instinct that life is precious is not just grounded in that. It's partly from watching doctors fight so hard to preserve the least glimmer of life.

'It's also because I feel we're sold an ideal and people feel that if they don't have it they're not enough. But if we become a tickbox society, where we say no because someone can't have sex or cannot feed themself, where will that leave us?

'What is a human being? Is my son any less of a human being? Am I, because having done a law degree I didn't pursue my legal career and became a carer?

'Does that make me, or James, any less of a contributor to society? We all want something. But my aspirations and James's are different. Others might long to be an air hostess; we just want to see him flex a finger.'

Attitudes toward people with disabilities.
Elisabeth once had to call an ambulance out to resuscitate James and was horrified when the woman on the phone said to her: 'You do know he's a DNR? [Do Not Resuscitate]' 'Do you know you're speaking to his mother,' was Elisabeth's retort, who had, in fact, not known. The DNR instruction has now been removed, but the incident makes a powerful point.

James's life has value:
Elisabeth is adamant that her son's life does have value -- not only to him, but also to the rest of the family and to those who meet him and come up to her to say: 'Your lad's all right, he is.'

Yet for all this maternal ferocity, Elisabeth still feels her son -- and those like him -- needs protecting from her, his mother and primary carer.

This is partly because of what she calls the months and years of 'insanity' and 'mental chaos', in the aftermath of the accident, in which state she says it would be close to impossible to make a fair decision on whether you should help your child to end their life. It is also because Elisabeth fears the breaking points you encounter on such a hard journey can make an unreliable carer of even the most devoted parent.

Shepherd has also felt overwhelmed:
Her toughest point came four years ago when she was rundown, ill and emotionally exhausted, and James wet the bed. 'I got him up and put him in the wheelchair, lifted his mattress and the mess went all over me.

'And I hit him. I was just so exhausted. I tapped him across the shoulders with my fingertips and in that moment I crossed a line. I felt I became untrustworthy. The shame was utterly overwhelming.'

SHE told her GP, and the social services. She also, for the first time, began to feel that if James asked her, it might be better to help him end his life, and hers, too.

'This violence is a dark secret. We need to be more open about it, because we need to get more help for carers -- not just physical support, but a way to rebuild mental confidence in yourself.'

James is not a burden, his life has value.
'Sometimes I see my son watching me out of the corner of his eye. How easy might it be for people like James to begin to feel they were a burden, and to want to give up?'

Like Kay Gilderdale, Elisabeth says she would like those who are seriously ill to have access to a panel of experts who could provide a more balanced support system, and a more open, rounded debate than any carer could be expected to give, should the person express a wish to kill themselves.

Most of all, though, she wants to give voice to all those whose lives are no longer what they intended them to be.

'I have my son and I can put my arms round him, and he's still pink and warm and I'm still grateful.' This is not only about a mother's love, though -- it's about James, too.

Elisabeth wants those like him to realise their lives have worth. 'My son is like a celebration. I'm so very proud of him.'

There are over 160,000 carers in Ireland, but of these only 27 per cent are in receipt of some level of carer's allowance.

Link to the article in the Daily Mail:

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