Andy Kelmanson, 73, still becomes tearful when recalling growing up as a sibling of a young person with a profound disability.
Her brother Michael showed signs of “brain damage” from birth but it was not until his early 20s that he was eventually diagnosed with epiloia, a rare genetic congenital disorder.
“It was a shock to us all,” Mrs Kelmanson said. “But suddenly we had an explanation for Michael’s disabilities.”
At the time, there was not the support for siblings of those with a significant disability that exists today in the community. Mrs Kelmanson wonders if things would have been different for her if such backing had been available.
“Michael, his life and his death are still with me; travelling at my side, in my heart and my head, and continuing to significantly influence my life.
“I can’t possibly be the only adult person who carries the experience of their disabled sibling with them, even after a whole lifetime.”
As a former Norwood trustee, the Potters Bar resident has approached the charity with the idea of setting up a support group or network for adults with a disabled sibling. And Norwood would be prepared to administer it if the demand was shown.
She told the JC that her brother was considered “uneducable” because of his regular seizures and “unmanageable” behaviour. The best her parents could do for him was have him admitted to Normansfield Hospital, an institution for those with severe learning issues.
Visiting Michael was traumatic as “we never ever knew if he even recognised us. He was non speaking and seemed fundamentally unaware of his external world”. When she married, she wrote to her parents, reassuring them that she would look after her brother “if they were no longer around, or able to do so”. But Michael died from pneumonia soon afterwards at the age of 24.
At his funeral, her mother said that arranging it was “the only useful thing I have ever been able to do for him”.
As a result of their experiences, Mrs Kelmanson’s family became advocates for better care for Jews with learning disabilities, helping to launch Ravenswood, which is now part of Norwood.
Mrs Kelmanson believed there were others like her, and adults currently supporting siblings with disability, who would benefit from talking to someone who understood their situation.
Norwood CEO Dr Beverley Jacobson said that “at the time Ravenswood was established, the emotional consequences for a family dealing with disability were ignored. So it is very likely that there are many people out there who feel the same as Andy.
“We have helped Andy to air her feelings in the hope it will bring others to the fore. If this is the case, Norwood would facilitate the development of a support network.”