Dominic Lawson on Ivan Cameron and the meaning of life

Writing in the [UK] Sunday Times, columnist Dominic Lawson says the recent death of young Ivan Cameron, son of British opposition leader David Cameron, is a reminder that there remains a “visceral public fear and even horror” of people with disabilities. Ivan had cerebral palsy and epilepsy. Lawson’s daughter Domenica has Down syndrome.

Lawson totes up recent examples of negative attitudes:

• Parents who lodged formal complaints to the BBC because they feared their children might be upset at the appearance of TV host Cerrie Burnell, who was born without a lower half of her right arm.
• A girl with disabilities who died in a hospital because health care workers concluded her life was not worth living and therefore not worth fighting to preserve.
• (more…)

Writing in the [UK] Sunday Times, columnist India Knight says Ivan Cameron, the son of British opposition leader David Cameron, left a legacy that will fundamentally change the public’s perception of disability. Ivan had cerebral palsy and epilepsy, and died last week at the age of six; his father is heavily favored to be Britain’s next prime minister.

Knight, whose daughter has a genetic disability, salutes David and Samantha Cameron for allowing the public to share in their experiences as parents of a child who lived with disability and chronic illness. They showed the public, she says, that parents of ill, disabled children can love their kids “in the same way and with the same burning intensity” that everybody else does.

An excerpt:

… Ivan Cameron’s short life has, thanks to his parents, had an enormous and significant impact on us all, and made a real and positive difference. Among all the pain and sorrow, this needs to be celebrated.

… Ivan’s glamorous parents’ love for him … changed the landscape. Ivan’s life gave the public a crash course in the modern, sane take on disability. It opened a much-needed window and blasted clean, fresh air into a stuffy, musty room where everything had been dark and hidden for decades — if not centuries — under layers of embarrassment and shame.

… What remains is the transformative level of understanding — of disability, of what makes a family, of love, of what matters — that Ivan’s short life sparked into being, not just for our potential future prime minister, but by osmosis for the country as a whole, regardless of what anybody’s politics might be. It’s an amazing legacy for a brave little boy who died as he lived, surrounded by love.

See also: Child’s life and death show British politician’s human side, by John F. Burns in the New York Times

Earlier posts here.

More from India Knight here. She pens a blog called Isn’t She Talking Yet?

(Photo from the New York Times)

Ian Birrell, deputy editor of the [UK] Independent and the father of a teenager with complex disabilities, reflects on the recent death of Ivan Cameron, the six-year-old son of UK Conservative leader David Cameron.

Over the years, Birrell says, he Cameron bonded over their shared understanding of the “hidden world of disability” and the need for improvements in government supports for the families of people with disabilities. Birrell’s daughter Iona is blind and has a seizure disorder.

An excerpt:

Over the years, we have swapped notes, discussed schools and doctors, and talked about how our disabled children have impacted on our lives and our beliefs. We have been thrust into the hidden world of disability, a land shockingly ignored by the rest of society. This has opened our eyes to the terrible failures of public services, the paucity of respite care, the endless battles against bureaucracy – and also to the immense service performed by an army of poorly paid carers and under-appreciated health workers. It has changed my views on the health service and hardened my support for immigrants, the unsung heroes of the caring world. It has increased his determination to support carers and health workers, sort out special schooling and hand power back to the users of public services rather than the providers.

… Listening to some of the coverage in the media yesterday, there is a common sentiment expressed that Ivan’s death will be a form of closure, that there might be a sense of relief that the struggle is over. This is a view that reveals so much about attitudes to people with disabilities. No one should be fooled: the only feeling will be one of numbing grief at the death of a cherished member of a family. People have asked me if the death of a disabled child is less traumatic, given that it is always a possibility. I can’t imagine that the trauma is any less intense.

We are fortunate that Iona is still with us and that we can still enjoy her life. But no parent ever gets over the death of a child – and a disabled child, even one with profound learning difficulties for whom life is a struggle and filled with pain, is no different. Our daughter’s life brings us sorrow, but it also brings us intense joy and meaning. Ivan’s death means only that, beside the happy memories, there will be a scar on his parents’ hearts that can never be healed.

Earlier posts here.

(Photo from the [UK] Independent)

‘Parents see the world through their children’s eyes. And Ivan Cameron changed his father’s view of everything.’

Writing in the [UK] Independent: columnist Deborah Orr says the life and death of Ivan Cameron  profoundly shaped the views of his father, UK Conservative leader David Cameron — and thus, perhaps, the future of a nation. Six-year-old Ivan, who had cerebral palsy and epilepsy, died this week.

Through Ivan, she says, David Cameron came to understand the challenges faced by people with disabilities, many of whom cope daily with  poverty and isolation. Cameron is considered likely to be the UK’s next prime minister.

An excerpt:

Young as he was, Ivan had a place in the public life of the nation, at least by proxy. He featured in speeches. His influence could be seen in Conservative Party policy. Cameron admitted that his views, especially his views about the National Health Service, had been altered by the experience of caring for a son with complex needs. Cameron also opted for state-sector schooling for Ivan, and admitted that his son’s special needs prompted him to think hard about the limits of inclusive educational policy.

… The failures of the present government, rather than his own clarity of purpose, are the factors likely to deliver Cameron to power at the next election. But Cameron is the first to acknowledge that his experience of being a father to Ivan has already had a strong influence on the direction in which Cameron wishes to steer Conservatism.

In this way, Ivan’s short life will continue to have a highly significant legacy: He changed his father, and his father has ambitions to change the country. This is, of course, just as it should be.

See also: The quiet heroism of carers, editorial in the [UK] Independent

An excerpt:

[The Camerons'] devoted parenting has illuminated the predicament of all those caring for severely disabled children. And the reality is that too many of these families are offered inadequate support.

(more…)

Had cerebral palsy, epilepsy

From the BBC, [UK] Telegraph:

Six-year-old Ivan Cameron, the eldest son of UK Conservative leader David Cameron, has died after a brief stay in the hospital.

In a statement, Prime Minister Gordon Brown said he and his wife Sarah were “very saddened” by Ivan’s death. “I know Ivan was a child who brought joy to all those who knew him and his was a life surrounded by love,” he said.

An excerpt:

Describing the moment when he learned of Ivan’s disabilities, Mr Cameron told the Sunday Times in 2005: “The news hits you like a freight train.

“You are depressed for a while because you are grieving for the difference between your hopes and the reality. But then you get over that, because he’s wonderful.”

The BBC’s political editor Nick Robinson said Mr Cameron’s experience of looking after Ivan, who needed round-the-clock supervision, had shaped Mr Cameron’s character and his attitude to the NHS.

Friends have previously attributed Mr Cameron’s “modernizing” leadership of the Conservatives to the National Health Service care Ivan received.

The illness has also helped the Tory leader realize that there is more to life than politics, they have said.

In a 2007 speech, Mr Cameron said: “I help care for a severely disabled child — my son.

“It’s what I do at the start of each day. It’s sharpened my focus on the world of care assessments, eligibility criteria, disability living allowance, respite breaks …

From the Toronto Globe and Mail, Hamilton [Ontario] Spectator, Toronto Sun:

A 22-year-old man described as having intellectual disabilities was held captive, beaten, burned and sexually abused for three weeks in an apartment in Hamilton, Ontario, police say. He was near death when authorities responding to a 911 call discovered him hidden in a closet.

Four people face charges in the case. The only apparent motive, according to Hamilton police Superintendent Bill Stewart, was sadism.

Police described the young man, whose identity is being withheld, as “trusting and vulnerable.” They said he had been living on his own, and said his disappearance went unreported. The man’s mother, whose name also was not released, said he has epilepsy.

From the New York Times:

John Bramblitt, who has epilepsy and has gradually lost his vision, says he found independence and confidence through painting after he became completely blind in 2001.

Bramblitt’s painting have the appearance of “hazy daydreams.” He says he distinguishes shapes and colors on the canvas by the feel of the texture and viscosity of the oil paint he uses.

“It wasn’t until I lost my sight that I became brave enough to fail,” he said. “Even if the paintings didn’t look good, I didn’t have to see them.”

… Along with this success has come quiet confidence and acceptance. “I don’t think of myself as being a blind person or an epileptic,” Bramblitt said. “It’s just another aspect of who I am.”

(New York Times photo)