<And the Importance of being Holistic.
Those who can think only in terms of “Outcomes”, and not in meeting the individual needs of children and their families, (Revisit Post 3) may as well delete this without reading it.
Each of these Posts can be read on its own, but they inter-relate; they can be read forwards or backwards or you can pick one with a pin. They explain the thinking behind Death of a Nightingale. This comes partly from my involvement in Special Educational needs as Chair of Governors of a special school for over ten years. It comes partly from a range of quite different experiences. (Revisit Post 10) In due course they will be added to the third edition of Death of a Nightingale.
I would not be writing this particular Post had I not been involved in special educational needs over many years and had I not, a few years ago, also been a Director of the Community Foundation for Tyne, Wear & Northumberland, an organisation that owes its success to matching the cause of an individual donor to a need nearest to it.
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. In the United States they are less common.
A very generous donation of £1,000 to “Death of a Nightingale Fund” in the Community Foundation serving Tyne, Wear and Northumberland gives me the opportunity to consider the question here.
This brings me to Annabelle, to her mother and to 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, as it can be for some people.
Annabelle’s mum has been the heroine. If she hadn’t been, she and her family would have gone under. 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, sadly a not unusual occurrence in this kind of situation.
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, and a few battles to tap into scarce resources.
When I was Chair of Governors of a special school I met many mums like Annabelle’s and some dads too. When they had children with special educational needs – sometimes more than one – and sometimes without special needs, they could share their love for them equally, but not their time. Here fairness was the only measure, and not always easy to come by: there is a moral in that. (Revisit Posts 4 and 5) These were the kind of people I was pleased to be able to help save their school from closure.
The mission statement for the school was “Whole School – Whole Child”. I always thought it was a very good one. But as you read the story of Annabelle you may think that the mission statement for a special needs policy should be “Whole Child – Whole family”, not social “Outcomes”.
This is what I am getting at when I write in Death of a Nightingale
The Prologue
Just how sensitive is the system today to individual needs that are far more numerous and varied than most people realise? Does it even begin to think in terms of a holistic approach to learning difficulties?
It is in that context that I have already suggested that deprivation should be of greater concern than disability. (Revisit Post 27) 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. I make this point more than once in the Prologue.
In many cases these children need time and patience which can sometimes be a scarce resource. And 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, if a mainstream school finds it difficult. Hence the importance of choice.
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 taking theirs, and afterwards 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 or, more precisely, a helping £ or two.
Some moralists bemoan the selfish gene. They are wasting their breath. Most people will always have their own agenda. But a proper agenda will always have an item A.O.B.- any other business.
I suggest that this should be for the world outside oneself.
I hope that I have made out a case to you for this small little bit of it.
Please go to the MAKE A DONATION page on this website, and help another family with a disabled child get a holiday in London.
AND COPY THIS WEBSITE TO YOUR FRIENDS SO THAT THEY CAN DO THE SAME
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