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)

This entry was posted on Thursday, February 26th, 2009 at 7:02 am and is filed under NOT2BEMISSED, blindness/visual impairments, caregivers, commentary, epilepsy, international. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.