June 23rd 2009
In this Post I invite you to think about the role of the private benefactor.
There are some on the Left who see the State as the great provider and they marginalise as intruders those individuals who try to make a contribution. Meanwhile, some on the Right satisfy their consciences when they leave it to the State to look after those less fortunate than themselves.
In the UK, when we can anticipate a leaner, meaner State, with £175 billion of debt to support, it is worth asking whether either of these attitudes makes sense. A very generous donation of £1,000 to the Death of a Nightingale Fund brings me to Annabelle, to her mother and her younger sister. The donation, made up to £1,500 from the fund, has enabled the whole family, with Annabelle’s helper, afford a holiday in London.
The interesting fact here is that the State generally has been very supportive of the family. It is life itself that has been unfair.
Annabelle’s mum has been the heroine. Both she and her sister had cancer early in their lives; she was diagnosed at the age of 19, her sister at the age of 25. Her sister died of it in 1997, leaving a young child.
She had the agony of deciding whether to have both or one of her ovaries removed, and has now lost both. Before that, in April 1998, she gave birth to Annabelle only to discover after a while that she was severely disabled. Meanwhile in July 1999 she gave birth to Elizabeth. Shortly after this her partner left her to fend for herself withdrawing his financial support.
There is no complaint here against the NHS, only gratitude. Social Services provide a carer for a couple of hours a week to help her to be more inclusive in the community and to spend quality time with Elizabeth. Bullying is not, as I understand it, an issue as it is unfortunately with many children and their parents, nor has there been the misplaced insensitivity of hard hearted officialdom. Life itself has been its own taskmaster.
I have met many mums like Annabelle’s and some dads too. When they had children with special educational needs – sometimes more than one – they could share their love equally, but not their time. Here fairness was the only measure, and not always easy to come by. There is a moral in that. These were the kind of people I was pleased to be able to help save their schools from closure.
It is in that context that deprivation should be of greater concern than disability. With the aid of time, patience and professional help - and you need all three - you can work your way around a disability, and learn to live with it. In many cases these children need time and patience. They need dedicated teachers, carers, school nurses, physio’s, speech and language therapists and others who have the expertise to give them the one chance that they have to find their place in the world. This is what a good special school can provide.
Deprivation is another matter.
A holiday, even in the UK, for a family with a disabled youngster is always going to be more difficult to plan, more expensive too. It is a real loss if it is out of reach especially when everyone else is showing off their holiday snapshots.
It is most unlikely that the State is going to help here. Hence the opportunity for you to get some real satisfaction that comes from personally lending a helping hand.