This piece comes from the stern archives and was first published on January 15, 2023.
My daughter Carlotta was born in the summer of 1999. Since the birth was a cesarean section and took place six weeks before the due date, I didn’t see my child in the intensive care unit until a day later. When the nurse took off the tiny mitten that Carlotta was wearing so that she wouldn’t tear any cables, what I had already been told about but which I had found hard to believe emerged: my daughter had twelve fingers.
This is how my life began with a child who is a very special child. I had no idea at the time that Carlotta had a rare genetic syndrome and that I had a child who would be considered “mentally disabled.” I also had no idea what that would mean for my life, how it would change my thinking and my attitude towards life. And I had no idea what incredible happiness life with Carlotta would have in store for me.
A few years later, in the spring of 2007, my sister Ulla died. She had been a nurse in a special hospital in Hamburg and had a son with whom she had just gone through the hardships of puberty. Thanks to her compassionate, humorous and warm-hearted charisma, her circle of friends was large and her life seemed so rich. Our relationship was close, we had accompanied each other through all the vicissitudes of life and had been each other’s advisor and support. One April night she took her own life. She was 37 years old at the time.
I thought of these two experiences – my happy life with Carlotta and the sad farewell to Ulla – when I was asked a few years ago to give a philosophical lecture on the topic “What is a life worth living?” to keep. It confused and dismayed me that we live in a world in which, on the one hand, people like Carlotta have to fight for their right to a life worth living and, on the other hand, people like Ulla no longer see their lives as worth living. This question has been at the center of my research ever since.
The question “What is a life worth living?” is one that every person probably faces in the course of their life. It can appear at the beginning of life when parents have a child with a disability, it can play a role in mid-life when one becomes ill with a serious illness, or it can be a challenge at the end of life when one is affected by dementia is affected. It is a basic human question. People not only want to live their lives, but also evaluate them.
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