Watch: Fire survivor in Castletown soothed by the power of music – Mum seeks ‘empathy and understanding’
A mother and her adopted disabled daughter have moved to Castletown in the hope of finding acceptance and peace.
Dorah, aged 30, is severely disabled after suffering catastrophic burns in infancy and her mum has been worn down over the decades by hurtful comments people have made regarding her appearance.
Our story of meeting Dorah and Bronwen Jones started with a quick snap at the Mey Highland Games this year when they featured in one of many photographs showing King Charles greeting visitors at the event. Dorah could be seen throwing her head back in delight as the King spoke to them.
“We were the last people he saw and Dorah could feel the build-up with people saying: ‘he’s coming’,” Bronwen recalled.
“When he finally got to us, she just did a whoop of joy as she realised the man was there and greeting us. I think he recognised us again at Canisbay Church as we were in the front pew and he said: ‘Good morning’ as he went past.”
Bronwen and her daughter have been living in Castletown for 18 months. They originally wanted to move to Scotland after the Brexit vote in 2016 which made her “very upset”.
In a debate with a “poorly-trained” social worker, Bronwen said facetiously that she felt like moving to the Outer Hebrides. The woman then obstructed their Scottish plans, “meddling without understanding the complexity of protecting a burns survivor,” Bronwen said.
“I’ve looked after Dorah since she was a baby. By that time, I was truly fed up with the English and thought it was time to go north. We want Castletown as our long-term home where we can get a big dog and I can write a book about my work in Africa.”
Bronwen supports burn survivors as part of the UK-registered Children of Fire charity she leads. Children and young people who have been affected by fires in poor communities across South Africa and the continent and who may otherwise not receive adequate treatment, are helped with surgery, medical advice, education and therapy by the charity.
“I still help a lot of children in Africa but I’m looking for a successor. I just want to settle down here in Castletown and find peace. When I first moved, I put all my thoughts down in a letter and delivered 100 of these around the village. With one exception, people have been lovely.
“Two brothers bring us fresh bass from the sea, neighbours invite us for music recitals or homemade shortbread, farmers and churches have been especially kind.”
The letter sent around the community contained a poetic essay that is strongly polemic at times and does not shy away from the prejudice Bronwen and Dorah have experienced over the years.
One passage reads: “My daughter who’s been called more foul names than you can ever imagine, also has no hands. And she has a hole in her skull. And her chest is burned too.
“Her breasts are askew and so judgemental are the dispensers of resources, that they don’t think it is worth their effort to realign them, because even to many in the medical profession, she is a non-person and not worth it.
“If you stare long enough and think long enough, you will recognise that she needs help with almost everything. Almost everything that you can do, she can’t.”
When she was six months old Dorah was severely burned in a shanty town fire. She was turned away from three hospitals as they were convinced she was about to die.
She was abandoned by her biological mother when first injured and despite years of being cot-bound, she made friends with Bronwen’s children who visited her regularly. Bronwen adopted her and it was through Dorah that she started the Children of Fire charity to help hundreds of other youngsters disfigured and disabled by burns.
Due to the severity of the fire and delays in appropriate treatment, Dorah lost her nose, eyelids, lips, bone in her forehead and hands. Fingers fell off one by one. Her ears were deformed by the flames. She has been rebuilt through 45 operations but would still benefit from ear and chest surgery and a toe transplant to one hand.
Over the years Dorah has had her face partially reconstructed, and an attempted corneal graft. She has a prosthetic nose. Developmentally, Dorah has the ability to count and, though she has limited speech, is able to greet people and sing songs. She is also sensitive to what people are saying about her.
Local celebrity musician Brandon McPhee was visiting the Jones household in Castletown and brought hearty cheer along with his accordion. Dorah was delighted with the music and danced around the room with a young South African visitor called Bronwen Mogano, who was named after the older Bronwen.
“I was at the Castle of Mey and got speaking to Bronwen, young Bronwen and Dorah about coming over to Castletown to play some tunes and sing some songs,” said Brandon.
“Music is a powerful thing and has a language of its own. How you can express feeling through music is quite incredible – people can feel happy or sad and have mixed emotions. Music can communicate without any words at all; it speaks for itself.
“Playing the accordion for Dorah you can feel the emotion in the way that she listens and she even tried some notes on the accordion. There’s a powerful connection there.”
Brandon is no stranger to meeting elderly and disabled people, bringing a special charm with his music that heals through emotion and a link to poignant memories. “It’s a really magical thing,” he says.
Bronwen thanks Castletown for its warmth and kindness. She says that all she seeks from the local community is empathy and wants to focus on the humanity of Dorah. Sensitive to how the media has sometimes portrayed her child, she recalls how one headline referred to Dorah as “A Living Nightmare”.
“We are two-tone. One black, one white. That alone is enough to cause a pause mid-sentence if we both walk into a new place. And embarrassed in the gap of silence, they look away.
“To many my child is hideous. To me, she is beautiful. This is my life. And that of my daughter.”
Further details on the charity can be found at: www.firechildren.org
The charity aids young African survivors of burn injuries – whether by fire, chemicals, electricity or hot liquids – and educates the communities in which they live to provide both prevention and cure.
