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Written by: Jessica Lerner, Eurocarers Young Carer Working Group

Jessica tells us about caring for her brother John and how she would like to share her own personal experiences in order to help others.

My name is Jessica Lerner and I live in Stockholm, Sweden. I have a brother and he is three years older than me. His name is John and he is one of my best friends. He has lived with cerebral palsy and epilepsy from birth and is in a wheelchair. He needs help with everything in his everyday life. He is usually the happiest person in the room. This is something that fascinates me as well as other people close to him. His laughter really comes from his heart. When he laughs, it’s really hard for me and other people not to laugh. He is a very stubborn and determined person. Actually, we both are and we both like to listen to music and to watch sports. As a sibling, it’s very important for me that he is treated with dignity and respect. Something that should be a matter of course. But sadly we’ve seen too many examples when it’s not. During our childhood and during the time when we grew up together, a lot of people often stared at him or commented something mean. Some people even asked me if he was an alien or a robot. When we were young we often played together and today we have a very close relationship.  I am so thankful for that because it has not always been that way.

During a specific and longer period of time in my life, I had to distance myself from my family. It just simply became way too much for me to handle as a sibling as well as an individual. When I was younger I often felt very disoriented, clenched between different worlds. I had difficulty identifying myself with other people in the same age. This is one of the main reasons why I do what I do today. I don’t want other siblings to feel that they are alone with their thoughts and feelings. I want to share my own personal experiences in order to help others. I want to increase the knowledge and create a deeper understanding when it comes to the sibling perspective as well as the family perspective. I try my best to be the change I want so see in the world.

I grew up with my mum, dad and my older brother. He is my only sibling and he really means so much to me. In so many ways he has given me perspective on life. He makes me grow as a human being. Today, since I started speaking openly about my personal experience, I’m a public speaker and a member of the Eurocarers Young Carer Working Group (this link will take you away from our website). I was in Edinburgh for the first time in October this year and I really fell in love with the city – it’s now my favourite weekend destination. I speak about my personal perspective as a little sister to an older brother with cerebral palsy and epilepsy from his birth. I was recently on Swedish live television (this link will take you away from our website), where we discussed this specific topic and also do other creative collaborations to highlight this hugely important perspective.

For me, it’s important that we work together as a team to create a positive development world wide. Together we can create significant improvements as well as necessary changes. And this work makes a huge difference in so many different ways, for so many people world wide. I want my brother to be seen as a human being with human rights and needs needs, just like anybody. It is about time he’s being treated in the way he deserves. Both my parents still need to struggle with this and I really don’t think that should be the case at all.

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