I had two options. One was to remain silent and wait to be killed. And the second was to speak up and then be killed. I chose the second one. I decided to speak up.

Deprivation of the ability to speak is more like an attack of impotence, or the amputation of part of the personality. To a great degree, in public and private, I “was” my voice. All the rituals and etiquette of conversation, from clearing the throat in preparation for the telling of an extremely long and taxing joke to (in younger days) trying to make my proposals more persuasive as I sank the tone by a strategic octave of shame, were innate and essential to me. I have never been able to sing, but I could once recite poetry and quote prose and was sometimes even asked to do so.

Writing became a therapy. First of all, it meant I was reconstructing my own existence. It was also an act of defiance. I wasn’t supposed to write. ... I evolved all kinds of mental exercises, even went back to those subjects which I said I hated in school, in particular mathematics. ... You know, anything to keep the mind alive.

Back in Montgomery during my growing up there, it was completely legally enforced racial segregation, and of course, I struggled against it for a long time. I felt that it was not right to be deprived of freedom when we were living in the Home of the Brave and Land of the Free. Of course, when I refused to stand up, on the orders of the bus driver, for a white passenger to take the seat, and I was not sitting in the front of the bus, as so many people have said, and neither was my feet hurting, as many people have said. But I made up my mind that I would not give in any longer to legally-imposed racial segregation and of course my arrest brought about the protests for more than a year.

I see the future as something that could come crashing down very fast. Let me put it slightly by way of a comparison. Normal people, and I use the term very deliberately, by this not otherwise able situation - I'm disabled. I'm abnormal. Normal people dont think very much about the medium term future. They think only about the present, which is constantly changing for them or the very far future, which is just an abstraction. For me, its the other way around, my present never changes. So I dont really think about. But the medium term involves my death so I'm quite conscious of what is going to happen to me in about a year, maybe two years, who knows, whereas no one else I know thinks like that.

But if I was sitting in an armchair with bits and pieces of rubber sticking out of me and my son came over and said, you know, would you like a banana? Wink once for yes, wink twice for no, I dont think the interest of the conversation would get me past the sense that this is horrible. It's horrible for me but above all, horrible for them. There are things worse than death.

It could really have an impact if I get it right. Something that will get the next generation to see there is a way to think about politics that is not just the way we've been habituated to do it. I care about that and I think I can do it.

This cockroach-like existence is cumulatively intolerable even though on any given night it is perfectly manageable. “Cockroach” is of course an allusion to Kafka’s Metamorphosis, in which the protagonist wakes up one morning to discover that he has been transformed into an insect. The point of the story is as much the responses and incomprehension of his family as it is the account of his own sensations, and it is hard to resist the thought that even the best-meaning and most generously thoughtful friend or relative cannot hope to understand the sense of isolation and imprisonment that this disease imposes upon its victims.

I was forced to think very hard about what it meant to be me, what it means to be a person who is only a brain. Pascal's 'thinking reed' really does capture it, because I'm just a bunch of dead muscles thinking.

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, of 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. ... 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'll be too late.