Big things to think about

Tom in a limo at my Dad's retirement rave up. Probably one of my favourite pictures of him ever.

Dad's pretty new to the internet, he's spent most of his adult life operating on very sick kiddies, and now he's retired and he's tinkering with facebook and email, and, ah, bless. Anyway, he tried to put something in a comment box and it didn't work. God knows why not. The over sixties can struggle with technology even though they can decline Latin verbs, or whatever it is you do with Latin verbs.

Anyway, this is what he wanted to say.

"In many ways Tom is a better person than a lot of "normal" people in terms of empathy, sympathy and altruism.
Some years ago (and I must emphasise that his current care environment is excellent) Tom was the victim of malicious acts by persons supposed to have care of him, was referred by them to doctors and ended up on sedative medication because of his supposed aggression.  It was eventually revealed that he was being abused and his aggression was frustration that nobody was listening to his point of view. After the evil carers were ousted he came off the medication and exhibited no further aggressive behaviour.
Tom's natural behaviour is caring and generous and he relishes spreading happiness to those around him"

Will's thoughts about Tom

I won't inflict on my brother, Will, the tendency I have to splurge personal information in an incontinent style, he has rather more dignity than I do. But he did put two quotes about Tom at the end of a treatment, which I reproduce here. Will has the keys to this blog, so if he wants to hack in and offer his point of view, then am sure he will:

"Tom is my big brother, and I am his little brother. I am married with children, run my own business and am fast becoming a boring middle aged man. Tom is still young at heart and manages to retain the passion and obsession for his heroes that I left behind with my youth. He is lucky in some ways." 

"I recently went through a very challenging period when I decided to start my own family and had to suddenly confront the possibilities that I might have children with Fragile X - to be honest it was a very frightening sense of what could happen and how it would affect my new family's life - these feelings are complicated by an absolute love and respect for my big brother Tom." Will Spicer - Tom's little brother

Brotherly Love

I was going to go to bed. But I got in and my Mum had sent me this picture of Tom and my brother Will, who is shooting the film. And I really don't think family pictures get much better than this. Had the most brilliant night, surrounded by loads of BBC bods trying to help me get the film on telly, but I was just thinking, nah, let's just make it, let's not have any more commissioning editors going, "Are they experienced enough, will she cry enough." We're making a small, sweet film and I do not need anyone else to ask me heavy questions about my relationship with Tom, I think all that will certainly come out in the wash of this film. This blog is already making me think, imagine what making a film will do. Christ, I'm three martinis to the wind and still I'm thinking about our little crazy plan that just might work. Sometimes you just have to crack on. No more meetings, please...

We've got a mascot and we're gonna use it

What is Fragile X

We've been applying for funding from various sources, and asked our Dad, a sciencey sort with a flair for singing and Latin and German (so not a total test tube geek), to write a bit of medical background to our story. Here it is, if you're interested.

Almost everybody knows about Down syndrome (Trisomy 21) but very few people have heard of Fragile X syndrome  (FX) which is almost as common and the second commonest chromosomal disorder known to cause mental retardation.

The condition was first described in 1943 by Martin and Bell and initially known as the Martin Bell syndrome until1969 when the chromosomal disorder was described. However it was not until the early 1980s that the laboratory test was refined to a point where the diagnosis  could be readily made and confirmed  by clinicians.  It was at this time that Tom ( who had been taken to many specialists over a period of about 10 years) was eventually diagnosed.

The sad fact is that many children with FX  are still going undiagnosed in 2009 despite seeing specialists for associated medical conditions.  Though there is no curative treatment for the condition we know from our experience with Tom that having a definite diagnosis made it so much easier to manage his emotions, social interactions and learning difficulties We could read about what to expect and the experience of others.. Before that it could be very difficult to cope with  him veering from extreme anxiety to great hilarity.  FX has considerable crossover with autism but information about pure autism is of limited value to those caring for someone with FX..

FX can be diagnosed prenatally by amniocentesis and it is vital that those seeking this service are fully informed and have the benefit of consultation with a specialist clinical geneticist who is well-versed in FX and its complexities.

Both the general public and the  medical profession should be much more aware of Fragile X. 

Tom Spicer's heroes, first installment

I rang my Mum last night, and spoke to Tom to try and persuade him to extend his holiday til the weekend so I can see him. Tom and I usually spend a lot of time saying goodbye on the phone, it's not because Tom is sad to see the back of me, more that for some reason he just will not be the last to say bye and put the phone down. So we play goodbye ping pong with pauses while one of us waits for the other to brutally put the phone down, when no click comes another big round of bye byes come around.

Anyway, none of this yesterday, Tom was off for dinner with one of my Mum's neighbours, Franco, a man I call the Howard Marks of Ashburton. Franco rides a very fast motorbike, is a true eccentric, his girlfriend is an ex-groupie from the seventies with some very amusing stories. Franco's done two turns in jail for being caught in Canadian waters with around 10 tonnes of hash, that he and others had sailed over from Pakistan. He wrote a cookery book in jail and looked after the library. He works as a builder now, but if you stop for a chat when he's up a ladder the conversation soon turns to philosophical matters.

Tom absolutely loves Franco, he fits the template for a Hero of Tom. Into music, fast modes of transport, confident, big, big characters, indisputably MEN! Lars is not the first of Tom's heroes, but he is the longest and most persistently spoken about. I hope I can introduce some more of Tom's heroes because, dude, some of them have been insanely unique characters. Don't get me started on Big Al.

Anyway, Franco and Jo had asked Tom round for dinner, without my Mum. Tom said they were going to be eating "chicken" but it came out "ch'n", eventually he got a k in there, but it took me a long time to understand the word chicken. (Am really hoping on the road that I'll get better at understanding Tom and that his speech will improve. It does go up and down, much like my mood and conversation does too.) He had a bottle of wine to take. I know that Tom would have been absolutely made up about this dinner.

And there it is, the guilt again. That very often Tom doesn't get to do the fun things we all take for granted, even though he loves and appreciates them just as much. I think about how much I love him, and how I want to do this roadtrip with and for Tom, but I also want to encourage more people to think about the learning disabled having a jollier and cooler place in our shared world.

Still, let's not get too well-meaning and earnest, I don't want to lose my 'cold' image.

What it's really all about is...

Angry flash of insight

THIS IS WHAT WE SPICERS GIVE TO ALL THE HATERS OUT THERE, A PROPER RUDE FU BIRD, AND NOT TOM'S USUAL POLITE INDEX FINGER ONE (note how bossy older sister is forcing him into this rude gesture).

I was just looking at some pictures of Tom and was suddenly moved by how desperately all my life I have wanted to protect him from other people's cruel judgement. Once on holiday in Cornwall I turned to see two girls trying to drown him in the sea. There was a girl at another comprehensive near mine in Devon who was notoriously sexually molested and then had dog shit forced into her mouth by a group of boys.

There are 1.5 million learning disabled people in the UK. And many of them will have stories like the ones above in their history, but not all of them are able to articulate it.

I hate the way we all too commonly treat learning disabled people. They routinely die because of poor healthcare, they are ignored and feared, they are not valued as members of society.

It is our moral duty as evolved human beings to value those weaker than ourselves, and have some compassion and patience. We should be far removed from the sort of backward societies that still lock up their LD citizens and neglect them to a heart wrenching extent.

No brainer, surely?

Thai River, buddy therapy

I went for Thai with some of my best ever girlchums last night. Poor Will came along, describing himself as "the gay at the hen", and naturally conversation turned to our crazy plan that just might work. The enthusiasm and shared excitement was thrilling, and made me feel jolly happy. That happiness is cutting through the fog in my brain (why do I always have two drinks too many?).
Will and I have got very used to a kind of negative undercurrent that runs through a lot of meetings with various media professionals, the 'can't do' attitude of big risk averse organisations. I don't begrudge them this, it's totally understandable. But it serves to demotivate and dispirit passionate newcomers to the game.
Just the night before last I'd been sitting mulling over the project with a guy who has spent a long time working in teevee and by the end of the conversation I was near suicidal and chewing my knuckles, rocking back and forth, sweating in anticipation of our imminent failure. In a way though, it was good; where with a normal project you could, possibly, just let it fizzle and phut to a non-starter filed under 'self belief failed to launch', with this one there is Tom to consider. We cannot let him down. Tom's dream is our mission.
I had to gird the loins of my confidence and get the fuck on with the task in hand, no room for flap rabbiting about and concentrating on the negatives.
Will and James, who will be making the film with one other cameraman, have a lot of experience. They both have interesting and original views of the world. Sitting in teevee offices I see the same cautions and concerns that you don't get from film people. Film people offer constructive advice and always end their conversations with, 'Just get out there and make it'.
Now, in a more confident state, with the whiny naysayers behind me, I have to say that I am a kind of glad that teevee isn't taking a risk on the project in the form we want to make it in. I want to make the film we want to make, funny and honest, not confected into some camera ready emotional tellybox shape. I'm laughing now at the suggestion that I am 'cold'. By that they mean, I assume, that I can't grin from ear to ear, weep on demand or get sentimental and mawkish about everything.
Christ alive, if we were all like that nothing would ever get done and Kleenex would be worth more than Microsoft.
Anyway, I love telly, and I love film. Hopefully we'll get the film on both. So I'll stop here before I've shot my foot full off, because with the other one in my mouth, I'll fall to the ground and hurt my bum.

Lars Silas Toy

I put the blog up on facebook and all sorts of interesting people messaged me and commented. My favourite today is my mate Skinny Chris, who pledged us his Lars Silas toy, pictured below. I'm thinking we can stick that on the RV and let it be our lucky mascot. Obviously I am still smarting from being told that the BBC said about me, "She's not Stephen Fry" or in another game of media whispers, "not easy to warm to" and "cold". And there's still the matter of finding a second cameraman who'll work for peanuts and beer.

But having a really cool toy totally wipes out that trifling fact and has set me back on the road to the Mission to Mars.

Yeah, who needs the BBC to like you when you have rocking Lars toy to put on your dashboard.

As Tom would say in moments of celebratory shouting, "Yeah, Metallicaaaaaa!!!"

Let me just clear something up...it's a common mistake

A learning disability - mental handicap, or mentally retarded as it used to be called in a murky depths of a not very nice linguistic past - is very different from mental illness.

Tom is not mentally ill. He has a learning disability, which, for my parents was hard work. For me, it meant growing up with a brother who was more complicated and challenging than most, who could not always communicate his needs and desires and who required extra care, compassion and understanding: he was terrible at playing shops but very good at kicking fights and eating crisps. So we always found a way to play together. The extra care and understanding required of me as a sister wasn't always there when I was a kid, and sometimes still he doesn't get from me now. If you can look beyond the disability he's just another regular guy who has a beautiful lack of the mannered artifice and bullshit, which seems to coat a lot of ordinary life. He still has enormous value as a human being, but getting to that value takes more effort than just small talk and checking out where his jeans are from (usually Tescos, if you're interested).

I'm seeing Tom this weekend and I'll get some words from him. But meanwhile this is how the UK's biggest LD charity Mencap defines it, significantly better than me:

A learning disability is caused by the way the brain develops.

There are many different types and most develop before a baby is born, during birth or because of a serious illness in early childhood. A learning disability is lifelong and usually has a significant impact on a person's life.

Learning disability is not mental illness or dyslexia.

People with a learning disability find it harder than others to learn, understand and communicate. People with profound and multiple learning disabilities (PMLD) need full-time help with every aspect of their lives - including eating, drinking, washing, dressing and toileting.

There are 1.5 million people with a learning disability in the UK. Like all of us, they are individuals who want different things in life and need different levels of support.

The first post

I woke up this morning in a proper state. In a month I am getting on a Virgin flight to Las Vegas with my brother Tom to try and find his absolute hero Lars Ulrich, the drummer in Metallica. If I had a penny for every time I've heard Tom say, "Wanna meet him Kate, wanna meet Lars", I'd be able to pay for a new eardrum to replace the one he's worn thin with his incessant pleading. Obviously this is going to be hard, Metallica are the biggest metal band in the world - although I read the other day Metallica bothered to meet a 90 year old female fan, so hey, it's not impossible.

But there's a couple of extra challenges. First, Tom has Fragile X, meaning he is learning disabled (the old fashioned among you might prefer the words mentally handicapped; the ones who deserve a good kicking would probably use the word 'retard'). He lives in a quiet residential care home with about 20 other learning disabled folk. His speech is pretty hard to understand and, well, Tom's a complex character. Hopefully one day you'll get to meet him.

I am in a proper state not because of Tom though, christ no. I'm in a flap because I get in flaps easily, and because I've decided this Mission to Lars should be a film. It's going to teach me a lot about Tom; I'll admit it's really easy to dismiss, overcompensate and kind of ignore a brother with a learning disability. It's time I confronted that shit in my psyche and grew on from it. I also think it'll be very entertaining. Tom has some very funny character traits. Tom is a pisstaker, and once you cut through his disability and see the man on the other side, he's a dude. My other brother, Will, is going to be one of the cameramen, he's a dude as well. Between the two of them I am fairly sure they will put me in my place. (Which will probably be cleaning the toilet in the RV.)

The Mission to Lars is a true gonzo, rock n roll roadtrip. Obviously no TV company wanted to touch us. So we thought, sod it, let's make a fuckin' movie man.

Dealing with professional feedback ("She [me] just isn't big enough to carry a TV programme about this...if it was Stephen Fry maybe..."), raising money, arguing with my brother Will, keeping up the promises to Tom, while searching for pennies down the back of the sofa to fund it, and generally doing all the things one needs to do to make a film is pretty, no very, hairy.

I'm trying to raise enough money to make a low budget feature film. So far we have about £12,000, a sixth of what we need. None of us have got any money or property we can put in, so me and my mates are having to find investors. (Thank God for mates, they're being fantastic) We're issuing shares in the film.

I always think if all else fails, have a party so two days before we leave on 28th November I'm having a rave for 500 people with ETA, we'll give half the money to the learning disability charity Mencap and put the rest towards production costs.

Whole thing's quite challenging, that's for sure. Especially on those mornings when you wake up feeling like a useless little worm.

I'll keep talking to myself here, I think it'll help. I get so scared sometimes, and I can't ring my Mum because I don't want to freak her that her three kids are embarking on a period of low budget mayhem. I know everything will be cool.

I'll throw up some pictures to try and bring us all alive.

Love from the Spicer crew on a Mission to Lars xx