Fresh Air Interview: Historian Tony Judt On Living With ALS In 2008, historian Tony Judt was diagnosed with ALS, a progressive motor-neuron disease. For the past several months, Judt has been writing a series of essays for The New York Review of Books, charting life in what he calls a "progressive imprisonment without parole."

A Historian's Long View On Living With Lou Gehrig's

A Historian's Long View On Living With Lou Gehrig's

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European historian Tony Judt sits with (from left) his son Daniel, his wife, Jenny, his former student Saul Goldberg, and his son Nicholas. Goldberg is biking across the country in honor of Judt. Courtesy of Saul Goldberg hide caption

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Courtesy of Saul Goldberg

European historian Tony Judt sits with (from left) his son Daniel, his wife, Jenny, his former student Saul Goldberg, and his son Nicholas. Goldberg is biking across the country in honor of Judt.

Courtesy of Saul Goldberg

In 2008, historian Tony Judt was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. ALS is a progressive motor-neuron disease that causes the central nervous system to degenerate. Over time, patients lose the ability to move their bodies, but retain full control over their minds. Judt describes the effects of the disease as "progressive imprisonment without parole."

By 2009, Judt had reached a stage where he was paralyzed from the neck down and using a respirator — which he calls "facial Tupperware" — to help him breathe. He also started writing a series of essays for The New York Review of Books about his illness. In the first, "Night," he describes the experience of losing control of his limbs:

"First you lose the use of a digit or two; then a limb; then and almost inevitably, all four. The muscles of the torso decline into near torpor, a practical problem from the digestive point of view but also life-threatening, in that breathing becomes at first difficult and eventually impossible without external assistance in the form of a tube-and-pump apparatus."


Tony Judt On ALS

In an interview on Fresh Air, Judt tells Terry Gross how he felt after his initial diagnosis.

"The first six months of this disease, from diagnosis to wheelchair, I spent fighting the reality of it," he says. "And I think that's probably a common experience. I thought towards myself, 'OK. I've still got legs, even though the hands are gone.' Then one leg would go, and I'd think, 'Well, I've got one leg left.' And so as long as you can imagine, however unrealistically, a future in which only bits of you work, then you feel frustrated [that] they don't. But once nothing does, the frustration goes away."

Though many parts of his body no longer work, Judt — the author of 10 books including Postwar: A History of Europe Since 1945 and Reappraisals: Reflections on the Forgotten Twentieth Century — has continued to write, with the help of an assistant who transcribes his dictation.

Cover: Ill Fares the Land by Tony Judt

"I'm productive," he says, "because I look at the body with some sense of detachment. 'You've let me down. I can't do this. I can't do that.' And so I think, 'Well, what can I do?' I can still boss people around. I can still write. I can still read. I can still eat, and I can still have very strong views."

Ill Fares The Land
By Tony Judt
Hardcover, 256 pages
Penguin Press
List price: $25.95
Read An Excerpt

His newest book, Ill Fares the Land, is a letter to young people about applying the past to the future — as well as a critique of what Judt calls the "deteriorating social contract" in the U.S. and Europe. Based on a lecture he gave at New York University, where he teaches, the book argues that "something is profoundly wrong with the way we live today."

"For 30 years," Judt writes, "we have made a virtue out of the pursuit of material self-interest. ... The materialistic and selfish quality of contemporary life is not inherent in the human condition. Much of what appears 'natural' today dates from the 1980s: the obsession with wealth-creation, the cult of privatization and the private sector, the growing disparities [between] rich and poor. And above all, the rhetoric which accompanies these: uncritical admiration for unfettered markets, disdain for the public sector, the delusion of endless growth."

Judt says he wrote the book to help young people make sense of the many changes in the world.

"It's about not forgetting the past. About having the courage to look at the present and see its faults without walking away in disgust or skepticism. ... I do think we're on the edge of a terrifying world, and that many young people know that but don't know how to talk about it."

Interview Highlights

On how living with ALS makes him feel:

"You mustn't focus on what you can't do. If you sit around and think, 'I wish I could walk,' then you'll just be miserable. But if you sit and turn around and think, 'What's the next piece I'm going to write?' then you may not be happy, but you certainly won't wallow in misery. So it's an active choice every day to renew my interest in something that my head can do, so I don't think about the body."

On what he has learned from his ALS:

"Unlike cancer, which I've had in the past, or AIDS or some other major organic breakdown or disease, no one has any ideas how to fight it. So once you get past the thought that this is ridiculous — Why can't they do something? — you stop thinking of your body as the object to fight. ... I was a very controlling person. And for me, I did not like to be in the push car, to be in the stroller — because it meant my mother was in charge. ... And from very early on, I've hated depending on the kindness of others. And I'm learning to do so, and it's a very good sentimental education."

On his religious views:

"I don't believe in an afterlife. I don't believe in a single or multiple godhead. I respect people who do, but I don't believe it myself. But there's a big 'but' which enters in here. I am much more conscious than I ever was — for obvious reasons — on what it will mean to people left behind once I'm dead. It won't mean anything for me. But it will mean a lot to them. It's important to them — by which I mean my children or my wife or my very close friends — that some spirit of me is in a positive way present in their lives, in their heads, in their imaginations and so on. So [in] one curious way I've come to believe in the afterlife — as a place where I still have moral responsibilities, just as I do in this life — except that I can only exercise them before I get there. Once I get there, it will be too late. So, no God. No organized religion. But a developing sense that there's something bigger than the world we live in, including after we die, and we have responsibilities in that world."

On whether history matters to him as much:

"I think it does. It really does. I know that sounds funny, but I believe the reason is this: that all I ever wanted to do in life professionally [and] occupationally was teach history and read and write it. There are times when I've thought, 'My God, you're a dull man, Judt. When you were 13, you wanted the same thing, and now you're 62 and you still want it.' And the upside of that is that I get as angry at bad history writing, or the abuse of history for political purposes, as I ever did."

On losing control of one's body:

"I don't feel at all like I'm being buried alive. I feel like this body is the accidental case in which I lie for six hours at night thinking. And that really does work. I sleep more in the days than I do at night. So nothing has gotten better, but my capacity to live within it has grown hugely."

On what gives him pleasure:

"The thing about ALS is that there are only two things left, beyond your head, which still work. One is the reproductory apparatus, and one is the excretory apparatus. Then you keep those until you die. So you still get pleasure from sex, and you can still get pleasure from anything you can see, anything you can say — and although this may not last much longer, anything you can eat. ... Sometimes, I think, well, all the good things in life are still with me. Food. Sex. Videotapes. I've got it all — what's the problem?

On what he misses:

"The only thing that I miss that I can't reproduce is travel. I can pretty much do anything else, but I can't travel easily. And I miss that terribly, because I was a person who moved all the time. My history writing was based on what I saw in strange, exotic places rather than just reading books. ... So I miss that."

Excerpt: 'Ill Fares The Land'

Cover: Ill Fares the Land by Tony Judt


A Guide for the Perplexed

"I cannot help fearing that men may reach a point where they look on every new theory as a danger, every innovation as a toilsome trouble, every social advance as a first step toward revolution, and that they may absolutely refuse to move at all."

--Alexis de Tocqueville

Something is profoundly wrong with the way we live today. For thirty years we have made a virtue out of the pursuit of material self-interest: indeed, this very pursuit now constitutes whatever remains of our sense of collective purpose. We know what things cost but have no idea what they are worth. We no longer ask of a judicial ruling or a legislative act: is it good? Is it fair? Is it just? Is it right? Will it help bring about a better society or a better world? Those used to be the political questions, even if they invited no easy answers. We must learn once again to pose them.

The materialistic and selfish quality of contemporary life is not inherent in the human condition. Much of what appears 'natural' today dates from the 1980s: the obsession with wealth creation, the cult of privatization and the private sector, the growing disparities of rich and poor. And above all, the rhetoric which accompanies these: uncritical admiration for unfettered markets, disdain for the public sector, the delusion of endless growth.

Ill Fares The Land
By Tony Judt
Hardcover, 256 pages
Penguin Press
List price: $25.95

We cannot go on living like this. The little crash of 2008 was a reminder that unregulated capitalism is its own worst enemy: sooner or later it must fall prey to its own excesses and turn again to the state for rescue. But if we do no more than pick up the pieces and carry on as before, we can look forward to greater upheavals in years to come.

And yet we seem unable to conceive of alternatives. This too is something new. Until quite recently, public life in liberal societies was conducted in the shadow of a debate between defenders of 'capitalism' and its critics: usually identified with one or another form of 'socialism'. By the 1970s this debate had lost much of its meaning for both sides; all the same, the 'Left-Right' distinction served a useful purpose. It provided a peg on which to hang critical commentary about contemporary affairs.

On the Left, Marxism was attractive to generations of young people if only because it offered a way to take one's distance from the status quo. Much the same was true of classical con­servatism: a well-grounded distaste for over-hasty change gave a home to those reluctant to abandon long-established routines. Today, neither Left nor Right can find their footing.

For thirty years students have been complaining to me that 'it was easy for you': your generation had ideals and ideas, you believed in something, you were able to change things. 'We' (the children of the '80s, the '90s, the 'aughts') have nothing. In many respects my students are right. It was easy for us -- just as it was easy, at least in this sense, for the generations who came before us. The last time a cohort of young people expressed comparable frustration at the emptiness of their lives and the dispiriting pur­poselessness of their world was in the 1920s: it is not by chance that historians speak of a 'lost generation'.

If young people today are at a loss, it is not for want of targets. Any conversation with students or schoolchildren will produce a startling checklist of anxieties. Indeed, the rising generation is acutely worried about the world it is to inherit. But accompanying these fears there is a general sentiment of frustration: 'we' know something is wrong and there are many things we don't like. But what can we believe in? What should we do?

This is an ironic reversal of the attitudes of an earlier age. Back in the era of self-assured radical dogma, young people were far from uncertain. The characteristic tone of the '60s was that of overweening confidence: we knew just how to fix the world. It was this note of unmerited arrogance that partly accounts for the reactionary backlash that followed; if the Left is to recover its fortunes, some modesty will be in order. All the same, you must be able to name a problem if you wish to solve it.

This book was written for young people on both sides of the Atlantic. American readers may be struck by the frequent references to social democracy. Here in the United States, such references are uncommon. When journalists and commenta­tors advocate public expenditure on social objectives, they are more likely to describe themselves -- and be described by their critics -- as 'liberals'. But this is confusing. Liberal is a venerable and respectable label and we should all be proud to wear it. But like a well-designed outer coat, it conceals more than it displays.

A liberal is someone who opposes interference in the affairs of others: who is tolerant of dissenting attitudes and unconventional behavior. Liberals have historically favored keeping other people out of our lives, leaving individuals the maximum space in which to live and flourish as they choose. In their extreme form, such attitudes are associated today with self-styled 'libertarians', but the term is largely redundant. Most genuine liberals remain disposed to leave other people alone.

Social democrats, on the other hand, are something of a hybrid. They share with liberals a commitment to cultural and religious tolerance. But in public policy social democrats believe in the possibility and virtue of collective action for the collective good. Like most liberals, social democrats favor progressive taxation in order to pay for public services and other social goods that individuals cannot provide themselves; but whereas many liberals might see such taxation or public provision as a necessary evil, a social democratic vision of the good society entails from the outset a greater role for the state and the public sector.

Understandably, social democracy is a hard sell in the United States. One of my goals is to suggest that government can play an enhanced role in our lives without threatening our liberties -- and to argue that, since the state is going to be with us for the foreseeable future, we would do well to think about what sort of a state we want. In any case, much that was best in American legislation and social policy over the course of the 20th century -- and that we are now urged to dismantle in the name of efficiency and "less government" -- corresponds in practice to what Europeans have called 'social democracy'.

Our problem is not what to do; it is how to talk about it.

The European dilemma is somewhat different. Many European countries have long practiced something resembling social democracy: but they have forgotten how to preach it. Social democrats today are defensive and apologetic. Critics who claim that the European model is too expensive or economically inefficient have been allowed to pass unchallenged. And yet, the welfare state is as popular as ever with its beneficiaries: nowhere in Europe is there a constituency for abolishing public health services, ending free or subsidized education or reducing public provision of transport and other essential services.

I want to challenge conventional wisdom on both sides of the Atlantic. To be sure, the target has softened considerably. In the early years of this century, the 'Washington consensus' held the field. Everywhere you went there was an economist or 'expert' expounding the virtues of deregulation, the minimal state and low taxation. Anything, it seemed, that the public sector could do private individuals could do better.

The Washington doctrine was everywhere greeted by ideological cheerleaders: from the profiteers of the 'Irish miracle' (the property-bubble boom of the 'Celtic tiger') to the doctrinaire ultra-capitalists of former Communist Europe. Even 'old Europeans' were swept up in the wake. The EU's free-market project -- the so-called 'Lisbon agenda'; the enthusiastic privatization plans of the French and German governments: all bore witness to what its French critics described as the new 'pensee unique'.

Today there has been a partial awakening. To avert national bankruptcies and wholesale banking collapse, governments and central bankers have performed remarkable policy reversals, liberally dispersing public money in pursuit of economic stability and taking failed companies into public control without a second thought. A striking number of free market economists, worshippers at the feet of Milton Friedman and his Chicago colleagues, have lined up to don sackcloth and ashes and swear allegiance to the memory of John Maynard Keynes.

This is all very gratifying. But it hardly constitutes an intellectual revolution. Quite the contrary: as the response of the Obama administration suggests, the reversion to Keynesian economics is but a tactical retreat. Much the same may be said of New Labour, as committed as ever to the private sector in general and the London financial markets in particular. To be sure, one effect of the crisis has been to dampen the ardor of continental Europeans for the 'Anglo-American model'; but the chief beneficiaries have been those same center-right parties once so keen to emulate Washington.

In short, the practical need for strong states and interventionist governments is beyond dispute. But no one is 're-thinking' the state. There remains a marked reluctance to defend the public sector on grounds of collective interest or principle. It is striking that in a series of European elections following the financial meltdown, social democratic parties consistently did badly; not­withstanding the collapse of the market, they proved conspicuously unable to rise to the occasion.

If it is to be taken seriously again, the Left must find its voice. There is much to be angry about: growing inequalities of wealth and opportunity; injustices of class and caste; economic exploitation at home and abroad; corruption and money and privilege occluding the arteries of democracy. But it will no longer suffice to identify the shortcomings of 'the system' and then retreat, Pilate-like: indifferent to consequences. The irrespon­sible rhetorical grandstanding of decades past did not serve the Left well.

We have entered an age of insecurity -- economic insecurity, physical insecurity, political insecurity. The fact that we are largely unaware of this is small comfort: few in 1914 predicted the utter collapse of their world and the economic and political catastrophes that followed. Insecurity breeds fear. And fear -- fear of change, fear of decline, fear of strangers and an unfamiliar world -- is corroding the trust and interdependence on which civil societies rest.

All change is disruptive. We have seen that the specter of terrorism is enough to cast stable democracies into turmoil. Climate change will have even more dramatic consequences. Men and women will be thrown back upon the resources of the state. They will look to their political leaders and representatives to protect them: open societies will once again be urged to close in upon themselves, sacrificing freedom for 'security'. The choice will no longer be between the state and the market, but between two sorts of state. It is thus incumbent upon us to reconceive the role of government. If we do not, others will.

The arguments that follow were first outlined in an essay I contributed to the New York Review of Books in December 2009. Following the publication of that essay, I received many interesting comments and suggestions. Among them was a thoughtful critique from a young colleague. "What is most striking", she wrote, "about what you say is not so much the substance but the form: you speak of being angry at our political quiescence; you write of the need to dissent from our economically-driven way of thinking, the urgency of a return to an ethically informed public conversation. No one talks like this any more." Hence this book.

From Ill Fares the Land by Tony Judt. Copyright 2010 by Tony Judt. Reprinted by permission of The Penguin Press. All rights reserved.

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