Here's the view out of my hotel this morning. TED2010 is held in a beautiful theater inside the Long Beach Performing Arts Center. In front we're building spaces for people to gather during breaks. The tent right in front of it is an eco-village, to the right the domes will house high-tech exhibits, the big tent front left is a "global village" and the registration area is right at the front. Much more inside...!
I hear from my team that there are TED banners all over town ahead of next week's conference. Some snaps! I'm flying out tonight ;-)
Tonight in the UK, science fiction author Sir Terry Pratchett used the famous platform of the Richard Dimbleby lecture to describe his battle with Alzheimer's and to make the case for assisted suicide. Indeed he proposed the establishment of a tribunal to decide such cases and volunteered to be the first plaintiff. I found the whole thing incredibly moving. Here are excerpts.
Shaking Hands with Death
My name is Terry Pratchett and I am the author of a very large number of inexplicably popular fantasy novels.
Contrary to popular belief, fantasy is not about making things up. The world is stuffed full of things. It is almost impossible to invent any more. No, the role of fantasy as defined by G K Chesterton is to take what is normal and everyday and usual and unregarded, and turn it around and show it to the audience from a different direction, so that they look at it once again with new eyes.
I intend tonight to talk about Alzheimer’s disease, which I am glad to say is no longer in the twilight, but also about another once taboo subject, the nature of our relationship with death.
When I was a young boy, playing on the floor of my grandmother's front room, I glanced up at the television and saw death, talking to a Knight and I didn't know very much about death at that point. It was the thing that happened to budgerigars and hamsters. But it was death, with a scythe and an amiable manner. I didn't know it at the time, of course, but I had just watched a clip from Bergman's Seventh Seal, wherein the Knight engages in protracted dialogue, and of course the famous chess game, with the Grim Reaper who, it seemed to me, did not seem so terribly grim.
The image has remained with me ever since and death as a character appeared in the very first of my Discworld novels. He has evolved in the series to be one of its most popular characters; implacable, because that is his job, he nevertheless appears to have some sneaking regard and compassion for a race of creatures which are to him as ephemeral as mayflies, but which nevertheless spend their brief lives making rules for the universe and counting the stars.
Alzheimer's creeps up very gently over a long period of time, possibly decades, and Baby Boomers like myself, know that we are never going to die so always have an explanation ready for life’s little hiccups. We say, "I've had a senior moment. Ha! Ha!" we say, "everybody loses their car keys," we say, “oh, I do that, too. I often go upstairs and forget what I have come up for!” we say, “I often forget someone’s name mid sentence” and thus we are complicit in one another’s determination not to be mortal.
I have touch typed since I was 13, but now that was going wrong. I got new spectacles. I bought a better keyboard, not such a bad idea since the old one was full of beard hairs and coffee, and finally at the end of self-delusion I went to see my GP. Slightly apologetically she gave me the standard Alzheimer's test, with such taxing questions as “what day of the week is it?” and then sent me off locally for a scan. The result? I didn't have Alzheimer's.
So off I went, reassured, about my business; I did a signing tour in Russia, a signing tour in the USA, which included breakfast at the White House, (there were lots of other people there, it wasn’t as if I handed Mrs Bush the cornflakes or anything) and then I did a signing tour in Italy, where the wife of our Ambassador very diplomatically pointed out that I had made a fist of buttoning up my shirt. Well, I had got up early for the flight, and had dressed in the dark, and so we all had a little chuckle, followed by lunch, and I hoped that everyone but me forgot about it.
Back home my typing was now so full of mistakes that it was simpler for me to dictate to my personal assistant. I went to see my GP again and she sent me to Addenbrooke’s Hospital in Cambridge. I have never discussed the interview with her, but either by luck or prescience, I ended up in front of Dr Peter Nestor one of the few specialists in the country, or maybe the world, who would recognise Posterior Cortical Atrophy, the rare variant of my disease. He and his colleagues put me through a battery of tests, and he looked again at my scans, this time, importantly, in a different place. When he gave me the news that I had a rare form of Alzheimer's disease I quite genuinely saw him outlined in a rectangle of flaming red lines. We had a little bit of a discussion, and then, because the facility was closing for the day, I went home, passing another doctor putting on his bicycle clips – this was Cambridge, after all, and such was my state of mind that he too was outlined in red fire. The whole world had changed.
I was lucky in several ways. PCA is sufficiently different from 'classic' Alzheimer's that I have met fellow sufferers who dislike it being linked with that disease, even though the pathology and the endgame are ultimately the same. The journey, however, is different. PCA manifests itself through sight problems, and difficulty with topological tasks, such as buttoning up a shirt. I have the opposite of a superpower; sometimes, I cannot see what is there. I see the teacup with my eyes, but my brain refuses to send me the teacup message.
The first draft of this speech was dictated using TalkingPoint on my computer which, while not perfect, produces a result that is marvellously better than anything I could tap out on the keyboard. From the inside, the disease makes me believe that I am constantly being followed by an invisible moron who moves things, steals things, hides things that I had put down a second before and in general, sometimes causes me to yell with frustration. You see, the disease moves slowly, but you know it’s there. Imagine that you’re in a very, very slow motion car crash. Nothing much seems to be happening. There’s an occasional little bang, a crunch, a screw pops out and spins across the dashboard as if we’re in Apollo 13. But the radio is still playing, the heater is on and it doesn’t seem all that bad, except for the certain knowledge that sooner or later you will be definitely going headfirst through the windscreen.
I have heard it said that some people feel that they are being avoided once the news gets around that they have Alzheimer's. For me it has been just the reverse. People want to talk to me, on city streets, in theatre queues, on aeroplanes over the Atlantic, even on country walks. They want to tell me about their mother, their husband, their grandmother. Sometimes it is clear to me that they are extremely frightened. And increasingly, they want to talk about what I prefer to call “assisted death”, but which is still called, wrongly in my opinion, “assisted suicide".
The people who thus far have made the harrowing trip to Dignitas in Switzerland to die seemed to me to be very firm and methodical of purpose, with a clear prima-face case for wanting their death to be on their own terms. In short, their mind may well be in better balance than the world around them.
I got involved in the debate surrounding “assisted death” by accident after taking a long and, yes, informed look at my future as someone with Alzheimer’s and subsequently writing an article about my conclusions. As a result of my “coming out” about the disease I now have contacts in medical research industries all over the world, and I have no reason to believe that a “cure” is imminent.
I said earlier that PCA at the end game is effectively the same as Alzheimer's and that it is the most feared disease among the elderly and although I was diagnosed when I was 59, it has struck adults in their thirties. I enjoy my life, and wish to continue it for as long as I am still myself, knowing who I am and recognising my nearest and dearest. But I know enough about the endgame to be fearful of it, despite the fact that as a wealthy man I could probably shield myself from the worst.
I have made my position publicly clear; this seems to me quite a reasonable and sensible decision for someone with a serious, incurable and debilitating disease to elect for a medically assisted death by appointment.
A major objection frequently flourished by opponents of “assisted dying” is that elderly people might be illegally persuaded into “asking” for assisted death. Could be, but the Journal of Medical Ethics reported in 2007 that there was no evidence of the abuse of vulnerable patients in Oregon where assisted dying is currently legal.
That’s why I and others have suggested some kind of strictly non-aggressive tribunal that would establish the facts of the case well before the assisted death takes place.
The members of the tribunal would be acting for the good of society as well as that of the applicant, horrible word, and ensure they are of sound and informed mind, firm in their purpose, suffering from a life threatening and incurable disease and not under the influence of a third party. It would need wiser heads than mine, though heaven knows they should be easy enough to find, to determine how such tribunals are constituted. But I would suggest there should be a lawyer, one with expertise in dynastic family affairs who has become good at recognising what somebody really means and indeed, if there is outside pressure. And a medical practitioner experienced in dealing with the complexities of serious long term illnesses.
Those opposing “assisted death” say that the vulnerable must be protected, as if that would not have occurred to anyone else. As a matter of fact there is no evidence – and evidence has been sought – that anywhere in the world where assisted dying is practiced, of the sick or elderly being cajoled into assisted death by relatives and I see no reason to believe why that would be the case here. Doctors tell me that, to the contrary, family members more often beg them to keep granny alive even when granny is indeed, by all medical standards, at the end of her natural life. Importantly, the tribunal would also serve to prevent, as much as humanly possible, any abuses.
Let us consider me as a test case. As I have said, I would like to die peacefully with Thomas Tallis on my iPod before the disease takes me over and I hope that will not be for quite some time to come, because if I knew that I could die at any time I wanted, then suddenly every day would be as precious as a million pounds. If I knew that I could die, I would live. My life, my death, my choice.
The journey: TEDxShekhavati
I have lived in Dubai all my life and ‘hated’ going back to India because I would fall sick very often and I thought India was insane—there were too many contradictions and I could not accept how all of them co-existed. Somehow, 2009 became home-coming of sorts. To escape a high-flying job that was materialistically fulfilling but was lethal to my spirit and self-esteem, I went to India to teach the first 8-Day Academy. And I felt I belong to rural India. I loved the colours, I loved the people. The same insanity that had made me reject the idea of India, now brought me to it. When I spoke at TEDxDubai, I was surrounded by so many people crying because of how my work touched them. I had a week of sleepless nights. I scribbled ideas all night to make 8DA a global education movement. And once, I was talking to Mehmood Khan whose work inspires me so much and I made a list of people I had to meet during my next trip to India. Then, a random crazy idea came: how about organising a TEDx conference in Fatehpur? Instead of me going to meet people individually, let’s get them all on one stage. Instead of just me benefitting from these people, why not let the whole village be inspired? I discussed this with James and he loved the idea but reminded me that it’s not an easy task and I must be dedicated. I applied for a license...and in the last week of October 2009, I got the license to organise TEDxShekhavati.
I didn’t know many people in India because I had stayed away from it for so long. I had more non-Indian friends! I began searching the net, connecting with people from India and especially Rajasthan. I made a list of people who had a story to tell. I looked for people who came from villages and small towns and had a great success story. They were not working to earn money for themselves, but gave back to the society too. It is easier to get people to Delhi, Bombay and other cities but a challenge to get them to Fatehpur. Apart from one speaker (who has researched Shekhavati region since 1977), no one else knew where Fatehpur was! I also looked for speakers who would be ‘genuine’ speakers—not there for the prestige of being on a TED stage. I had confirmed ten speakers. Then, one night, I came home from an event to find my father on phone till after 11pm which is very unusual for him. My mother comes to me crying, telling me to stop all my 8DA and TEDx event because it is a hassle and there’s no benefit to b derived from it. And then, I found out. Schools in our ‘mohalla’ (area) are all community schools, funded by prominent families of the village. So, one person cannot be the decision-maker. The only place where TEDxShekhavati could be held was the community school. Some of the men in this cabinet decided that TEDxShekhavati was a threat to the village culture and should not be allowed. They also found it un-Islamic for a girl to be single-handedly organising this, for her to be on stage in front of many people and to be talking. They organised a small committee to specifically look into TEDxShekhavati. Of course, none of them knew TED and didn’t care to research or at least visit the TED website. They scheduled a meeting; I was asked many questions. I gave them names and talk details of all speakers, talked to them about Babar Ali, William Kamkwamba and others. They were so fearful of this conference, saying that the Mullahs would oppose it and find faults with it. I was bringing headache to them.Until that day, when I would read about other TEDx events in India and abroad, I identified with their passion and the way the crowd responded to them. In a moment, I suddenly felt so alienated from those emotions. I had no idea what TEDxShekhavati would look like. I had no idea where it would happen and how many speakers and attendees would show up. But I knew one thing: it would happen. If not anywhere else, then it will take place in my house—with 20 people, 50 people..whoever. I contacted the speakers and explained the situation to them. Told them that if they can’t make it or accept such an uncertain scenario, then they can opt out. None of them did. Instead, they all stood behind me and said they were now more than certain they wanted to be part of this because they wanted it to happen. Everyone else thought I was crazy. I was talking a language nobody would understand. People wouldn’t care. But I wouldn’t accept what they said—I wanted to see it to believe it. People want change, I wanted them to tell me that they didn’t and maybe, I’d believe. Then, there was a Swine Flu scare. Four death in a week in Fatehpur. My parents said they’re cancelling their tickets (which were booked for January 5, 2010). I told them I am still going. If I have to die of Swine Flu, I’ll die of it in Dubai and if it’s not written for me to doe of Swine Flu, I can be seated in a room full of SF patients and I’ll come out alive. I can risk my life but I didn’t want anyone else to get into problems because of me, so I told my family that I would travel alone. My cousins called me from Fatehpur and told me not to come, ‘it is very bad here’, they said. I stocked up on hand sanitizers and face masks for all [planned] 300 attendees and speakers. My parents decided to stay in the city (Jaipur) while I travelled to the village. On Jan 7 morning, I arrived. The smell of the village, the pollution, the dirty streets, open drains, children running off to school, dogs and goats on the streets...just made me smile. I felt at home. I knew I was doing the right thing. I started visiting schools and talking to people in the market about TED. First two days, they gave me a very blank expression, not understanding anything I said. Simply smiling and listening. One of them said ‘I don’t know what this TED is but your accent in Marwadi is nice!’. On the second day, I was drained from all the talking, breaking down the TED concept and explaining TEDxShekhavati to people. One young man came to me and said: ‘Are you Masarat? I have heard a lot about you from village people.’ He was heading one of the local schools. I spoke to him about TED and TEDxShekhavati and he smiled and said: ‘I am so inspired after listening to you! I will surely come!’ I was so happy that SOMEBODY used the word ‘inspire’. That’s what I was looking for. It was also the energy I needed to continue this. Exactly one week before the event, the community school heads withdrew the venue. They said that until I don’t wear a ‘niqaab’ (covering for my face), I will not be allowed to talk on stage. My father was furious. He immediately came to the village with my mother to help me organise TEDxShekhavati. I was surprised to see them. He told me the village school will not host this anymore. I told him not to worry. I got in touch with a school I had visited a day before. It was a ‘Hindu school in a Hindu area’. They are the biggest school in Fatehpur and very expensive but had better facilities. They welcome TEDxShekhavati and I confirmed them as the venue. Six days remained and all planning had changed.We invited two main newspapers that people read locally. The reporters came with camera people. With the help of two local school teachers, I translated some basic information on TED and TEDxShekhavati in Hindi and Urdu. I gave them those sheets and also explained it in very, very basic terms. Until the next three days, nobody printed anything. They didn’t understand what to write. Then, they started asking for money. Starting from 10,000 Indian rupees! Since nobody was willing to publish a story, we placed an ad in the local newspaper informing people of the event and to contact us if they wanted to come. We got a call from a nearby village where they said they will bring 50 students! My mother starting talking to our relatives and women in the neighbourhood informing them of TEDxShekhavati and told them they must come. Most women worked till late night so they can be free the next morning. One of my aunts told her husband to handle the goats and their feed while she’s at the conference. Then, my father gets a call from the Head of the community who says they are willing to give us back the venue! I refused. My father refused. All preparations were on. Posters were printed and distributed in bazaars. People were talking about it in the barber’s shop, in the auto-rickshaws. Banners were put up in the neighbourhood and in the bazaar welcoming people on January 19, 2010. Buses were booked in different locations so that people could have transport access. The educated men in the community supported the event and praised it as a big positive change led by ‘the daughter of the village’. Hotel rooms were booked for the guests. Transport was arranged. Since the event was outdoors, we needed a better projector. One guy says the cost will be 80,000 Indian Rupees! And he said such a facility was not available anywhere. So we agreed. I needed more funds! So far, the cost of the entire event was covered by the money fundraised by the UAE Twitter community. I tweeted about needing more funds; a friend from Twitter in India contacted me immediately and offered 50,000 Indian rupees! Here I have to mention, people were not willing to advertise for the event because no one wanted Fatehpur. Cities are more attractive! A day before the event, projector guy calls and says the solution he offered us will not work. We must rent a LED screen for 210,000 Indian Rupees. I cancelled it. We stuck to a normal projector. We told the guys who were making the tent to make it dark so we can have a better viewing. I will admit: I was so nervous; my fingers were ice-cold the entire day. The temperature was between 1 to 3 degrees C. I was so nervous that I thought I should cancel my talk because I might make a fool out of myself. On January 18, 2010 the speakers started arriving. Sitting for dinner with Samar Jodha, Aman Nath, Amrita Choudhary, Shrot Katewa and Anwar Ali, I felt so calm. As all of them got into great conversations with my father, brother and uncles, I just observed and got such a good feeling in my heart. These speakers were real people who were here for the purpose, not for any glory. They all connected so well and we heard each others’ talks and discussed ideas from them, gave feedback, laughed and had a great time. I finished some last-minute work in the night. I slept for an hour. Then, I was awake all night. Tomorrow was The Day. On the day, I reached school in the morning. Everything looked alright. We thought we can accommodate more people here because the venue was bigger, so we placed 600 chairs. One of my uncles told me the night before he had ordered 200 extra chairs. I hoped people would turn up! The projector stopped working. It wasn’t reflecting the images. I didn’t panic because what doesn’t work...doesn’t work. Just accept it. I informed the speakers and they took it in stride. I opened the event and told all attendees that projector wasn’t working so I will narrate the TED talks instead of showing them. I had prepared TED talks with Hindi voice-overs. Oh and another thing: the sound guys did not have a connection from the laptop to the Sound System! One of the speakers, Mehmood Khan, could not make it because of a last-minute trip. So, he had sent his 7-minute talk as an audio file. I was going to lose a speaker because of the sound system! But...I figured a solution J We started the event with the Langa musicians who were amazing. I thought some fundamentalists will walk off but surprisingly, everyone were enjoying the music. I saw people laying thick carpets and I thought: ‘OMG! The chairs are all full!’. There were 250 people seated on the carpet and another 100 standing near the tent opening, so we did have more than 1,000 people. I couldn’t Livestream the event because the net connection is very poor. It took me 25 minutes to attach photos that I had e-mailed you (that’s 25mins per e-mail). The talks went smoothly, the crowd listened, children were well-behaved. Instead of Chris’ video, I spoke to people about TED and TEDx concept. I spoke about Babar Ali and also narrated Michael Pritchard’s talk. (When I compared the 200nm TB bacteria to the size of their water filter, everyone went ‘OHHHHHH’. They all clapped throughout the event!)
When Mehmood Khan’s turn came (the audio file), I increased volume on the laptop and put a Mic against the speakers...viola! Many people came to me and said ‘Where was this guy talking from? How could we hear him? Was he talking from the Internet?’ I ended the talk with a beautiful clip from the Indian national anthem. Everything went well. Lunch was organised for speakers and guests. Feedback so far has been great!
Most common: “We had always seen such people on TV. We cannot believe that we were invited to an event where we can hear them talk and see them in front of us.” “This is the start to bigger community change in Fatehpur.” “You have raised the bar for all the girls. Now, the women community is very inspired and parents will educate their girls.” “A very proud thing for all of us that first TEDx in Rajasthan took place in our Shekhavati area.” “It was such an educational event. Beyond any of our expectations. We never knew such people came out of our villages!” It make me incredibly happy to see that it worked. There was someone who said: “This was not for people like us. This was for people who have the jazba (passion).” I think that was a compliment, no? Personally, I believe that the urban India has adopted a wannabe-culture. They think it’s cool to lose the identity/culture. But rural India is the heartbeat of India. My main aim is to empower them in their circumstances. I always tell them—no one will come from ‘Amreeka’ to solve your problems. You have to solve them yourself. TEDxShekhavati showed them that it could be done. Attendees were given handkerchiefs with the TEDxShekhavati logo hand-woven by slum women in Jaipur. There were five street children who came with one school teacher (who is their relative) and those boys were so happy, so inspired. They told me that at next TEDxShekhavati, they will be standing on stage. I told them: I would be honoured.
The ever thoughtful author and futurist Juan Enriquez is angry. He's throwing his weight behind a radical new constitutional amendment. If it resonates with you, forward this link. or copy the text, paste and email. Why not? The sub-text here, at least for me, is the widespread revulsion at how dysfunctional Congress has become. Most of us can't see how to hit back. Maybe this is one way.
TED is all about ideas worth spreading. And Twitter is the perfect medium to share your favorite TED talks. But I've noticed some people struggling with the long web addresses on TED talk pages, creating tweets that look like this:
So we created a feature that allows you to quickly tweet a talk using a shortened web address which we automatically create. You just enter the text of your tweet in the box below the video player.
We then send you to your Twitter home page with the tweet ready to go, complete with short web address added. You will still be able to edit the tweet before sending if you wish. So for example if you enter the text "Watch.." you'll end up with this tweet all ready to go.
Try it! It's quicker to do, and much more likely to get retweeted. (And if you notice someone sending out a longer TED address, feel free to point them to this page!)
Here's just one example of a thrilling Charter for Compassion event. We're hearing of similar all over the world.
If you haven't done so, please add your name here http://charterforcompassion.org (by clicking the 'Affirm' button). Better yet, consider organizing your own event to celebrate the Charter and spread compassion!
