Why I've Written a Book About Living with Down Syndrome
Actor and campaigner Tommy Jessop has written his memoir A Life Worth Living to help others understand what life with Down syndrome can look like
People living with Down syndrome are not all the same. We have different gifts and personalities, like any other group of people, and we can live and love and sing and dance and feel emotions like everyone else. I’m lucky because I’ve had great opportunities, but I believe that everyone has a gift; we just need to help them dig it out, then we will really see what they can do. We need to give people the chance to live life to the full. We need to tell our good stories so that other people are inspired to believe in us and help us follow our ambitions.
As a child I did not know that I had Down syndrome. I didn’t find out until about twenty years later, when I got a lead role in a play about a boy who also had Down syndrome. I grew up feeling just like any other kid. Finding out didn’t really make any difference to me because I understood that people with Down syndrome have something extra: an extra 21st chromosome. And that is a gift. It makes us special. One of the many perks of living with Down syndrome is that some of us are double-jointed, which might mean we are doubly special, actually. My party trick is to put both my feet behind my head.
Where does Down syndrome get its name?
Dr John Langdon Down first described our special features about 160 years ago, but I think we have always been around because archaeologists found the body of a child with Down syndrome who was carefully buried 5,500 years ago, having been breastfed by their mum. Then in the 1970s Dr Langdon Down’s name started being used as a label for people like me.
That is just the label, though. I think this is a mixture of good and bad. The good thing is that I think that means people could and should understand us better. We should celebrate the lives of people living with Down syndrome. What is bad is being told what to do in life because of being labelled. This is why I have a personal grudge against labels. They separate us from making choices in life, because people just see a label and not the person. A label does not have a voice, but people with Down syndrome should start having their own voices heard. I myself might be a voice for those people who cannot speak up as such. So I might be a human version of a message being sent around the UK and the world. I really want to help improve other people’s lives.
I have great sympathy for people who are not able to have their voices heard, and I really can relate to them because if anyone tells me what to do I do not react at all well. Beware of repercussions!
I don’t really think about living with Down syndrome. I tend to just get on with my life. If I do think about Down syndrome it feels like a label, which is quite depressing. I might be different from others, but not because I have Down syndrome. I’m the exact opposite of many people, really. Other people tend to be serious, and I see the fun side of life and have a laugh.
I don’t think Down syndrome is anything to be frightened of. It is part of me, but it is not who I am. I am a human being called Tommy Jessop, not a human being called Down syndrome.
I also have a grudge against labelling anyone with anything, really. I’m not sure it ever is helpful. I am a man on a mission to get rid all of the labels by seeing past them to what the person is truly like and what they are truly are capable of doing.
I have written my book because I’m a man on a mission to show that life with Down syndrome can be exciting and is worth living. I want other people to understand, and to give us the chance to live life to the full and to be fulfilled.
We are all different, with different gifts and skills.
I’m a professional actor, dancer, campaigner and public speaker trying to make a difference, and I’m a Doctor of the Arts and now a writer. I’m also a brother, son, uncle, friend and best man. That is my story.
Other people have their own exciting stories to tell.
After I was in the BBC TV series Line of Duty someone kindly offered to write a book about my life, but I decided I wanted to write it myself, so here you are.
I really do hope you will enjoy yourselves reading my memoir, and that it will not be too emotional for you – or at least that it will be emotional for you in a good way.
I will take you to award ceremonies, onto film sets and behind the scenes, into my campaigns and public speaking, tease you about sport and share some emotional moments along the way. I will talk about what it takes to play a character on stage or on screen, and there might be a few puns. I quite like puns! We might also talk about music and Shakespeare and growing up.
In some of my work there have been hard-hitting stories, but these stories need to be told.
I hope my book can influence other people’s lives, and show how others have influenced my life as well.