My thoughts precisely – Dr Beverley Jacobson Chief Executive, Norwood

19 June 2019

My life took the biggest turn when my eldest daughter was born. She had meningitis at birth and we didn’t think she’d make it, but she did. Initially, the doctors told us her development was in normal limits. You choose to believe what you want to but, when she was eight months old, we could no longer ignore the signs and decided to get a brain scan.

As long as you have hope you can keep going but as soon as hope is snuffed out you fall. The brain scan showed that she had extensive damage. We were told not to have any expectations.

I was doing quite well until then…

You have to understand that she actually screamed for 24 hours of every day for probably the first five or six years of her life. We used to have to pass her backwards and forwards and I was up with her most nights. At the same time, my mother-in-law was diagnosed with cancer and we were thinking: What is the value of life? So the first thing we tried to do was to have another child and I got lucky. At the point Talya was diagnosed, I was already five months pregnant and I thank G-d every day for that because I don’t believe I would otherwise have had the courage to have another child.

Norwood became my saviour.

A friend told me about Norwood and, when Talya was a year or so old, we joined a support group. It was a lifeline to know there were people in the same situation as me and that this organisation was always going to be there for me and my family.

People start treating you differently when you have a child with learning disabilities. We had recently immigrated to England [from South Africa] and were trying to make new friends in a new community. I was in a mums’ and toddlers’ group and some people there were talking about hydrocephalus. None of them knew anything about it and I’m a medical doctor by training so I told them what causes it and so on. They completely disregarded what I said and carried on talking with their projected ideas. I came home that day and realised that a large part of my self worth had fallen through the ground.

That’s quite disempowering.

Running and fundraising was a way of taking back some control. I started running marathons for Norwood in 1996. I did it because there was so little that was mine any more. That was my way of trying to reclaim a little bit of me.

Dr Beverley Jacobson

A group of little girls helped me realise what I needed to do.

One day I was out in the park with my youngest daughter and a group of her friends when some disabled adults arrived. As they got out of their vehicle these little girls started pointing fingers and laughing. My daughter whispered: “Mummy, my friends don’t understand about being disabled.”

So I gathered this little group around and tried to explain to them what disability was. They didn’t mean to be mean, they just didn’t know what to do. I told them that whenever they see people like that they should be holding out a hand not pointing a finger.

My experience with my oldest daughter has been an amazing one.

She is incredibly resilient and has given me a lot of strength through her own determination. More importantly, there are so many people who have helped us along the way. I’ve had to do what I do. I didn’t have the choice. But when I see people who don’t have any reason to give their lives to these people, it is incredible because it can be so tiring and draining. Every interaction between people who are providing the support and the people we’re supporting is magical. It’s human kindness at its finest.

I am driven by the vision of complete integration. I believe in the innate potential of every individual. The expectation should be one of individuals living independent lives where they have complete fulfilment in whatever they are doing. When I witnessed this approach for the first time it was like all of the hope that had been crushed when my daughter was eight months old was suddenly alight again.

I can clearly remember the moment my dreams for my daughter’s future started to become a reality. One of the best moments came at a year-end review when my oldest daughter was just about to finish school. Someone asked her what she wanted to do with her life and she said: “I want to live independently and have a job.” I think that was partially my brainwashing but if you don’t hold aspirations for your own children, how else are they going to have them?

People with learning disabilities are not inhibited by the same social norms that we are. They often just come right out and say the things most of us are thinking and feeling. It’s so refreshing and reminds you of what’s important in life.

What excites me most is the potential for social reform.

It’s about continuing the process that started with that small group of children. We need to educate the world about disability because the more we do, the more opportunities will open up for people and that’s only right and fair.

Working in this world has been healing and soul-saving. What we at Norwood have to do is to extend our reach and effectiveness in safeguarding our community’s children and families and boldly take our place as a leading provider in the field of learning disability. I came to Norwood to continue my quest to transform lives – to turn despair into hope. To do this we need to adopt a can-do, creative and collaborative way of working.

We are not there yet and at the moment it’s quite hard, but this is the vision that is driving me.

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