Could you introduce yourself quickly?
I am a 44 year old journalist, I live in London (Notting Hill). I have a brother called Tom, he is currently 41 and lives in the west of England near Exmouth in a residential care home. Tom has Fragile X Syndrome, an inherited learning disability. My other brother, William, is 37 and also lives in London (Tufnel Park), he is a commercial filmmaker.
Tom’s dream is to meet Lars, what was the trigger to help him to achieve this dream?
Tom had asked many thousands of time to meet Lars over about a 15 year period, we (as I think often happens to learning disabled people) would just say, 'Yes Tom, yes Tom' while never doing anything about it. He asked so much, I think the neurological term is ideational perseveration, but I might be wrong. One day, finally, I just said, "OK Tom, let's find Lars, but we're going to have to make a film of it and it isn't going to be easy." I didn't want him to have what they call in the business a grip and grin, it had to mean something to all of us, to be an adventure and a real journey, for it to be a mission.
Why did you want to make this mission a documentary? Who are you targeting by this movie?
We had to make it a documentary for several reasons, firstly, William and I do not have much money, to take the time off work and the money a trip would cost we had to validate it with some work. second, it's a great story, why not tell it. thirdly, we know how cool our brother is, the wider world really doesn't pay any attention to learning disabled people, perhaps we could make the world realise Tom is a cool guy.
fourth, we thought it would be a fun roadtrip and a great document of our sibling relationship. The last one didn't work out at all as we found it very difficult and we had fights the whole time. We aren't targetting anyone in particular, anyone who likes a good story, a good soundtrack. Inevitably people who work with learning disabled people will see it, as will Metallica fans, but there is no 'classic' fan. All sorts have enjoyed it.
Did this experience help you to better discover your brother? Did it help you to discover more about Fragile X syndrome?
yes and yes. we learnt so much about FXS, about Tom and about each other and about our relationships (and how they were broken and needed to be fixed)
We see in the film a very strong bond between you and Tom, though at first we feel like you owe him. Where does this come from, according to you, this sense of guilt? It’s only your feeling or a kind of “brotherhood” feeling of all the brothers and sisters of Fragile X syndrome?
It comes from Tom being my brother and me loving him to the moon and the sun and back. We grew up together. We are connected in that deep part of the soul that any siblings are (or at least they are in my family - even if they drive me crazy sometimes). Yes, we had drifted away from Tom, and I think both of us deeply deeply wanted to reconnect with him, it wasn't just guilt. Guilt is a rubbish emotion. It was love, and wanting to know him better and be closer to him and to show him a good time...
Your movie is an immersion in the life of your family: are you expecting to change the way society treats disability?
All I wanted was for people to see past the label that society has given him and see the man that I know and love. I think we succeeded in that. I would love to think I could have a wider impact, I don't know if we do. I hope we make people think a bit more and see Tom as no different from anyone else with hopes, dreams and a love of a good cup of tea or coffee.
As a sister or brother what is the biggest fear for Tom?
That he is not safe, cared for, fulfilled or respected, that he is being bullied, ignored or treated like a second class citizen, that he is seen as a nuisance, that he is unloved. These are all things that happen to learning disabled people ALL THE TIME
The Jerôme Lejeune Foundation is helping with scientific research, what are you expectations of this research?
Science should not breed neurodiversity out of our society, I believe. I celebrate neurodiversity, but I would love to improve Tom's quality of life and his ability to communicate with the world and ensure he is as healthy as he can be and that he is understood.