‘The love at shul for our disabled daughter was epic’

8 May 2024 – 30 Nisan 5784

The family with Josephine at her 16th birthday party

Sheila Brill has written a powerful article in this week’s Jewish Chronicle on her profoundly disabled daughter Josephine and the love she received at Bristol and West Progressive Jewish Congregation.

Josephine was born, in May 1993, with catastrophic brain damage due to medical negligence at multiple stages of her birth. Sheila, who suffered from PTSD as a result, recently submitted evidence to the All-Party Parliamentary Group on birth trauma and works with nurses at the University of the West of England using her experiences to ensure better practice in future.

In the JC article – and her book Can I Speak To Josephine Please? – Sheila writes about the “wonderful” experiences Josephine enjoyed in their Progressive community, including an “epic” Bat Mitzvah.

She says: “Josephine was non-verbal and found it difficult to move, but always responded to hearing Hebrew. On Friday nights, when we lit the candles and said the blessing, she would swing around to listen. I honestly don’t know why. Perhaps it was because it was clearly a different sound, or maybe the way we did it meant she picked up on some sort of emotion. But it always astonished me.

“Although I was brought up in an Orthodox shul, I was never religious. My husband Peter and I have for years been very involved in our local Liberal synagogue in Bristol. They are a wonderful community and were always accepting of Josephine in her own right. The synagogue is a fully-accessible building and whenever Josephine came to shul, she roared and snorted during prayers, but we never felt embarrassed.

“When Josephine was 12, the Rabbi’s wife suggested that we celebrate a bat mitzvah for her. She added that it would be good for the community. It was an incredible event, such a rite of passage, and so moving. At the service, Asher paraded the scroll for her, as she couldn’t do it, Peter read her portion and I did the haftorah. About a hundred people were crammed into the synagogue that day.

“Afterwards, we had a party in the garden, with a marquee. We turned our garage into a sensory zone with bean bags, and Josephine greeted all the guests from her bean bag. There were people playing guitars and singing, a harpist a flautist, plus a touch therapist. Several people spoke about Josephine; I had to preview their speeches so I didn’t descend into tears.

“The love in that space that day was epic.”

Josephine had many health issues and procedures throughout her life and in January 2017, at the age of 23, she died.

Speaking about her work now, Sheila added: “Thirty years after Josephine’s birth, women are still going through terrible birth experiences, and they needn’t be happening. I want nobody else to experience what I went through.”

    • Sheila’s book about her experiences, Can I Speak To Josephine Please, can be bought from Amazon here. You can read the JC article in full here.
  • Picture: The family with Josephine at her 16th birthday party

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