'You don't have to die before you're dead' - Features - Health & Families - The Independent

'You don't have to die before you're dead'

Acclaimed historian Tony Judt continues to produce books in spite of suffering from a condition that has left him paralysed from the neck down. He talks to Stephen Foley

Tony Judt is coming at us in stereo. The master of European history is booming through the threatening crackles of a speaker in one corner of his sunny study on New York's Washington Square – which is disconcerting, because he is also right here in the room.

Judt's voice is phlegmy and breathy, but still strong. He uses the microphone – attached to the blanket that covers the useless two-thirds of him – so that he doesn't have to strain. He is maintaining his voice. He must maintain his voice. It is a tool he has wielded to devastating effect critiquing the European left, and he is wielding it once again to chide a generation of "pygmy politicians" and to beg for a revival of social democracy. The disease that has paralysed him from the neck down has not silenced his voice, and Tony Judt is coming at us with all his rhetorical guns blazing.

"We have responsibilities for others," he says, "not just across space but across time. We have responsibilities to people who came before us. They left us a world of institutions, ideas or possibilities for which we, in turn, owe them something. One of the things we owe them is not to squander them."

It is barely 18 months since Judt was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig's disease, a condition which comes without pain or any loss of sensation, but which renders sufferers progressively less able to control their limbs, and makes it hard to breathe without the aid of an air pump to assist the diaphragm.

"I just thought they were using lousy cheap corks these days," he says, remembering that the first sign of something wrong was that he found it harder to open wine bottles. "I think subliminally I knew what I had even before I knew it. I was throwing a baseball around with my kids and remember thinking, godammit, I throw this ball as hard as I ever used to and it only goes half the distance. And then I remembered a documentary about the baseball player Lou Gehrig; a journalist watched him train in 1939. He was throwing the ball with his usual power and the ball was hardly travelling at all. And I thought, Jesus Christ, do I have some muscular problem similar to Lou Gehrig?"

As we talk, Judt repeatedly seeks help from his nurse or from his writing assistant, Eugene Rusyn. Sometimes his wheelchair must be adjusted so he is more upright, sometimes a pillow helps, sometimes not. Life is not comfortable. The microphone is clearly an additional irritation, the scratching and crackling requiring its constant adjustment, too. And this is just the daytime. In a piece in the New York Review of Books that generated a flood of thank-yous from those affected by the disease, he gave a raw description of the agonies of night – the cumulatively intolerable itches unscratched, lying "trussed, myopic, and motionless like a modern-day mummy". The piece spawned a series, and a collection of memoirs is next in line for publication.

"That's it for writing," Judt says he had concluded, as he went from still being able to drive in October 2008 to needing help even getting in a car by the end of November. But he had not figured on the importance of his voice, with which he dictates his work these days, in long, lucid sentences in a British accent that he has never been Americanised, despite almost three decades away. "What you lose is autonomy, what you gain is – well, I wouldn't say you gain anything, but you get a sense of what you can do with your head alone.

"There's nothing saccharine about this, it's a crappy disease. It imprisons you, it turns you into a bundle of jelly, it's going to kill you sooner or later, and in a very unpleasant way, because it almost certainly strangulates you or chokes you. So there's nothing good, ok? Having said that, I get satisfaction out of understanding what I'm going through, which I can only achieve by describing it with an almost externalised dispassion. It makes me feel like I'm not dead yet. I also think that it helps my family feel that I've got some control over my situation. I've got young kids so I think that's good – but no, I've nothing uplifting to offer. Except that you don't have to die before you're dead."

Judt has been following the case of Ray Gosling, the BBC presenter who admitted suffocating a terminally ill partner, and has examined the legal lines as apparently dispassionately as he has viewed the rest of his condition. "Obviously I can't ask Eugene just to come along and pull the plug out, because he would be in legal trouble. The agreement I currently have with my wife is that if I could not speak and had to be put on a tube which meant I would never be able to speak, then I would rather not be put on that tube. I don't want to be the passively alert vegetable in the corner that takes in everything but can't communicate, which I think would suck a lot of life out of my family without giving very much to me.

"But no one can predict how they will feel. I might prefer to sit in the armchair and watch my kids grow up even though all I could do is wink and nod. If someone said five years ago, how would you feel about living in a wheelchair with a piece of Tupperware on your face, I would have said no way. But in fact it's perfectly do-able."

It is just a matter, he says, of being "bashed into shape" in the morning – having his throat cleared, being washed and fed – before setting out to write. And at 62, with his 2005 opus Postwar: A History of Europe Since 1945 having catapulted him to a level among the most respected academics of his generation, he is determined to use his voice more ferociously than ever.

Ill Fares the Land, dictated in eight weeks flat to Rusyn, is a call to reclaim the lost language of government action on behalf of a collective good, and revitalise the institutions of the welfare state. It is not, one need only read the title to tell, an optimistic book. The reader leaves with the feeling that this could go either way.

From continental Europe, through the UK, where he grew up in the East End of London, to the US, where he has been a professor at New York University since 1995 – Judt paints a bleak picture of the landscape he surveys.

He also offers the prospect of a profoundly depressing and "disembodied" election in the UK. When Britain goes to the polls, according to Judt, the country faces a choice between a hollowed-out social democratic party and a Conservative party that highlights the "broken society" but can't admit that it was the legacy of Thatcherism that broke it. "Neither side can directly speak to the depths of the problems they claim they would fix. Both are fraudulent."

It was Judt's own Sixties generation that put individual self-expression above collective action, undermining on the Left the justification for activist government. That opened space for Thatcherism and the "corrupted, half-evacuated political culture" that followed. With anger building about the inequalities that this has spawned, and unless the left can revive a faith in social democracy, the spectre of authoritarianism looms.

In this telling, politicians have been "pygmies"; pusillanimous and unable to speak up for moral action – a tragedy in which Judt reserves a special role for Gordon Brown. "Blair grew into pygmyhood. Brown has shrunk into it," he says.

"My father saw Brown in the Labour Party mould of the Twenties and Thirties out of which Attlee and Bevin came, the moral Celtic fringe, slightly austere, focused on the responsibilities of the political class towards society at large.

"You would expect a man who has grown up in the Presbyterian tradition of stark Scottish politics to hate the City of London on ethical, moral and prudential grounds. Instead you have a diabolical pact to combine the rhetoric of social justice with an economy we don't understand but whose primacy we have simply decided to accept as though it was a truth that we could do nothing about.

"Blair famously liked rich people, Brown simply thinks that you have to work with the rich if you wish to govern Britain today. It is a failure of moral will, and Brown is therefore the saddest of all these figures. Mandelson is contemptible and Blair is miserable, but Brown is a sad figure, because he's a reminder of what we've lost."



Ill Fares The Land: A Treatise on Our Present Discontents is published by Allen Lane (£20). To order a copy for the special price of £18 (free P&P) call Independent Books Direct on 08430 600 030, or visit Independentbooksdirect.co.uk

To read the full transcript of Stephen Foley's interview with Tony Judt, go to independent.co.uk/tonyjudt

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