Tom Spicer is not your typical film star. For a start he has fragile X syndrome. It’s the most common inherited learning disability.
In fact, he has a bundle of disabilities, including autism, and he’s lived for 25 years in a residential care home in the West Country.
He’s also a huge Metallica fan and has an obsession with the band’s drummer Lars Ulrich. For years he has repeatedly asked his brother and sister when he will meet Lars.
After 15 years of ignoring the question or fobbing him off, his siblings, Sunday Times journalist Kate Spicer and filmmaker Will, finally tell Tom that they will help him try to find Lars.
As adults, the pair have drifted away from Tom. In the process their “normal” sibling guilt about their disabled brother has deepened.
Metallica are on the road. The trio plan to fly to America to follow the West Coast leg of the band’s world tour.
Tom will go from Exmouth in Devon to Los Angeles and beyond – and with luck they will get to go backstage and meet Lars.
Kate and Will have high hopes for their mission – a Brady Bunch-style holiday to appease their guilt and make Tom happy.
At first Tom is a willing player and he contributes to plans and preparations for the road trip.
Their parents offer cautionary advice and concerns.
But as their date of departure for America approaches Tom’s co-operation wavers and then disappears completely.
On the first day of their mission, as they prepare to fly to LA, Kate and Will prove unworthy of the weight that they have taken on.
Tom runs away.
And things don’t get any better. In America, just as Metallica’s management start saying that a meeting could well happen, Tom says he doesn’t want to see Lars.
The trio are trapped together in a Winnebago, dirty and tired, and look like they’re falling apart.
Will and Kate can’t provide any of the things that their parents have insisted Tom needs – and Tom looks like he’s having the worst time of his life.
In Vegas, Tom chooses to stay in van eating biscuits while Metallica are on stage.
Will and Kate are having to learn to include their brother and to respect his wants and needs.
In learning about Tom, they make life on the road better for him.
Meanwhile, Metallica’s people send AAA passes and the hints are that Lars might meet Tom. But does Tom want to meet him now?
The next stop on the tour is Sacramento, which is also home to the Mind Institute, where the world’s foremost expert on fragile X explains Tom’s syndrome to his brother and sister.
The professor thinks that it will be great if Tom can meet Lars.
Things start to fall together. And by the time the Anaheim gig comes around, Tom is finally ready to meet his hero.
When Lars Ulrich meets Tom Spicer a chain of events takes place that ends with our hero meeting his hero and both walking past 20,000 howling fans at the Honda Centre towards the stage.
It’s hard not to be moved.
Kate Spicer answered some questions about the whole escapade.
Why did you decide to make the film?
My brother has fragile X syndrome, the commonest cause of inherited learning disability and single gene autism.
For a long time we didn’t know this. Tom was just “special”, “different” or a “problem”.
He was only diagnosed when he was 15. Tom’s 40 now. I’m 42.
Our younger brother, Will, a filmmaker, is 36. For nearly 20 years Tom has been fixated on Lars Ulrich the drummer with Metallica.
At first we dismissed him, just thought it was part of his disability and, I think, for the record, we were really wrong.
As we grew up and found our adult lives, Will and I found ourselves drifting apart from Tom. I think he often felt left out and separate from us.
Will and I decided that the way we could come together again as siblings was to set off on the road and try to find Tom his hero and, into the bargain, mend some of the sibling ties.
Sounds great doesn’t it? Well, it wasn’t. It was very hard work, very challenging and stretched Tom to the limits of his abilities.
Eventually though, yes, there was a happy ending. But I’m not going to tell you too much or you won’t come and see the film.
What is the message in the film?
Overall, I’d say Mission to Lars questions what it really means to be “normal”.
At the end of the film, most people find themselves warming to Tom more than anyone. He is the real dude in the whole story.
It’s not often learning disability is represented in a cool way. I think this film does.
Has the film changed Tom?
Hell yeah! Since we got back he’s been going off on some missions of his own. He has a bus pass, a mobile phone and even went to Plymouth one day when he was only meant to be going to Exmouth.
I’m so proud of how he has changed. He is much more confident. But best of all, without question, is that Tom, Will and I are much closer.
We will always have this trip for the rest of our lives and I will never take Tom for granted again.
The trip changed our lives – as well as making a cool film.
How did you raise the money to make the film?
It was very difficult to raise money. We were first-time filmmakers, a family, making a documentary about learning disability (which no one finds “sexy”).
Aside from Metallica, we didn’t have a lot to get your average investor aroused.
So instead of hectoring my cashed up contacts and friends for investment, I threw big parties and had auctions.
People were so kind and generous and somehow we managed to find a shirt signed by the whole of Chelsea, thanks to a friend of mine who knew Joe Cole.
We got a guitar signed by Kasabian, again through a connected mate. My friend the photographer Sophy Rickett donated work, as did Gavin Turk and Julian Wild.
The auction lot that always gets people’s interest is that I had recently written a story for Esquire magazine about a new breed of pornography being made by a guy called Justin Ribeiros Santos at Joybear Pictures.
He had given me, as part of the story, a part in one of his films. A walking, talking, not a rutting and grunting, part, you understand.
I asked Justin if he would donate a similar thing for our auctions and he said yes. We auctioned off two in the end at around £2,000 a pop.
I imagine if I had richer friends I might have made even more. It’s quite a fun prize, no?
We also got a grant from the Wellcome Trust and money from a private individual called Peter Cundill, a financier who was very clever and very rich, but had sadly been affected by a fragile X-related illness late in life.
He died while we were in post-production and we dedicated the film to him.
What is fragile X syndrome?
Fragile X syndrome is caused by an inherited gene that is mutated on the X chromosome.
Depending on the degree of mutation, it can cause anything from mild depression to some really very serious learning disabilities and everything in between.
It’s now thought this could affect as many as 1 in 125 women and around 1 in 400 men.
It’s a genetic disorder that still isn’t always well or properly diagnosed.
For more information visit www.fragilex.org.uk.
How did you make the film?
I did not direct the film. I merely raised the money and made things happen.
The film was directed by my brother William and his business partner James Moore. Will filmed inside the family unit, and James stood back, watching us.
Will, James and I weren’t exactly great friends after we finished filming. But everyone loved Tom.
Tom comes out of the film a lot better than me or Will!
You have started a campaign you call Mission Mencap off the back of Mission to Lars. Can you tell me more about this?
We never wanted to profit from this, or to feel that we had exploited Tom.
Any profits from the film will go into a fund called Mission Mencap which will help to update Mencap’s leisure clubs, called Gateway.
We are just putting together a competition too that will put talented filmmakers together with a learning disabled person who is prepared to go through a similar Mission as we did to Lars.
What we want is to create lasting beautiful and meaningful documents that show learning disabled people in the proper, human light, and not as victims or different.
Are you looking forward to coming to Brighton?
Hell yeah! I love Brighton. Some of my favourite people live in Brighton and I know that we will not only be embraced for the film but also for our love of a party.
Why do you think people love the film?
It’s got highs, lows, tears, laughter and a proper happy ending. It’s a story that all of us can relate to.
For more details about Mission to Lars visit www.missiontolars.com.
Quiz Kate about Lars – and Tom
The Duke of York’s is screening Mission to Lars at 9pm tomorrow (Thursday 12 July).
The 80-minute movie will be followed by a question and answer session with one of the stars of the film, Kate Spicer. Brighton TV presenter Annabel Giles will be in the chair.
The Q&A will be followed by a short set from Heavy Load. The Brighton band is made up of musicians with and without learning disabilities and starred in a film of their own.
Mencap in Brighton
There are estimated to be 5,000 adults with learning disabilities living in Brighton and Hove – just over 2 per cent of the population.
More than 800 receive support from Brighton and Hove City Council to help them live as independently as possible, with more than 250 living in residential care homes.
The local branch of Mencap supports 33 adults with learning disabilities through its outreach service.
Some are given help around the home or as they get around town. Others are given help with their finances. The support workers can be involved in planning and preparing meals or trips to the shops, or providing help with sport or leisure outings.
The local office is based in Queen’s Road, Brighton.
For help and advice, the organisation can be contacted by phone on 0300 333 1111 or by emailing mencapdirect@mencap.org.uk.
Information is also available at www.mencapdirect.org.uk. To raise money or volunteer, visit www.mencap.org.uk/get-involved.
