Disbelief about Scopes decision.
Good morning guys. I am sat in my house in the sunny Vale of Glamorgan reeling from some news I heard last night that Scope, the disability charity, have moved away from their initial core principals of supporting families with children with Cerebral Palsy.
First of all I thought that would break the charities constitutional foundations, and secondly, as Cerebral Palsy is on the rise, surely there is still a place for a dedicated disability charity focusing purely on Cerebral Palsy.
It is estimated that 1 in 400 babies born in the UK have a type of Cerebral Palsy. Figures indicate that with the birth rate in excess of 700,000 per year there may be as many as 1,800 new cases of Cerebral Palsy in children each year. Source — http://www.cerebralpalsy.org.uk/
I think it is visible from these numbers that a dedicated Cerebral Palsy charity is definitely needed. You may be asking yourself why I’m so passionate about this, its because my Cerebral Palsy was caused by an incubator failing to deliver oxygen not once, but twice. It has left me with complications ever since.
When cerebral palsy was identified by Dr. William John Little, he said that it was a complex condition and that we needed to focus research onto it. Some of the most brilliant minds in medicine and psychoanalysis have helped learn more about this condition. Below is a brief history of the identification of Cerebral Palsy.
Who discovered Cerebral Palsy?
The origin and history of Cerebral Palsy include a number of great minds, generous hearts, and dedicated people striving to improve the lives of individuals with disabilities. In the mid-1800s, Dr. William John Little pioneered the study of Cerebral Palsy using his own childhood disability as an inspiration. His innovative techniques are still helping people today.
Sir William Osler, considered an important figure in furthering modern medicine, wrote the first book on Cerebral Palsy. Dr. Sigmund Freud, the father of psychoanalysis, proposed the idea that Cerebral Palsy might result from abnormal fetal development — decades before the medical field embraced the concept.
Innovators continued to bring Cerebral Palsy into the national consciousness, as well. Marie Killilea wrote a book, titled “Karen,” a novel about her daughter’s life with Cerebral Palsy. The book which is still in print today hit the New York Times bestseller list in 1952. Isabelle and Leonard Goldenson and Ethel and Jack Hausman were also parents of children with Cerebral Palsy. Both couples were giants in their respective industries and well-known philanthropists who used their influence to found the organization that eventually became the United Cerebral Palsy Association (UCP).
Breakthroughs in medicine, such as blood typing, the use of phototherapy to cure jaundice, and the development of a vaccine for rubella helped prevent Cerebral Palsy, and continues to do so today. Meanwhile, technological advances allow people to redefine what it means to function with disability.
So I repose the question, surely the UK needs a dedicated Cerebral Palsy charity. I’m not one of these people who says everything that is wrong with citizens should be fixed by charities and in some circumstances I oppose the use of charities to fill spaces where the state should be delivering services. I do believe organisations that can further the exploration of certain conditions are needed and under this circumstance I really do passionately believe there needs to be a Cerebral Palsy charity here in the UK. When I was studying my masters in pediatrics in child health I saw how important it was for families to have dedicated advice lines about Cerebral Palsy once we had delivered the diagnosis that their child will have Cerebral Palsy.
The picture aside this text is me in one of those incubators that may have caused my Cerebral Palsy. I was born at 3 pounds 14 ounces, the equivalent of one and a half bags of sugar. If I didn’t have dedicated health care practitioners, I wouldn't be able to dictate this article to one of my team because I couldn’t speak until I was five years old. My mother still recounts with some anguish, me banging my head on the floor through frustration caused by Cerebral Palsy.
I would like to call on the people of the UK to stand with me and either get help realign Scopes values back to just focusing on Cerebral Palsy or set up a dedicated Cerebral Palsy charity. With a mission to further the research into Cerebral Palsy, support families when first told the diagnosis of Cerebral Palsy and help people live with the complex issues which Cerebral Palsy bring with it.
If you would like to carry on this conversation, or possibly even help set up a charity, or perhaps you would just like to talk about your experiences with Cerebral Palsy, please feel free to email me: Damian@executivecoaching365.co.uk to carry on the conversation.
