Peter the Human Cyborg on his groundbreaking transformation

If we were to hear you speak, the voice would be a manifestation of your own but what of the words we hear?  Is it an approximation of your thoughts and intentions or a replication of them?

This is an area that I find tremendously exciting. It’s genuine cyborg territory! You see on the film the time when, talking with Lama – the wonderful researcher from Intel who worked with Stephen Hawking – I chose to give up my independence and instead increasingly partner with AI. I say, chose. But in reality it was that or give up any chance of spontaneous communication – at least until the next decade when direct brain-computer interfaces may become practical.

My version of AI puts people in the driving seat. And this is where I think our research has the chance to prove a really important point. You see, to my mind, AI on its own is like a brilliant jazz pianist. But without anyone to jam with. It can give an impressive solo performance. Wow the audience. Yet even so, it’s nowhere near its full potential; if seamlessly merged with another talented performer with noticeably different skills the combined virtuoso performance would seem close to magic.

At the heart of all the research I’m encouraging is Human-Centric AI – in other words, AI merged with people, neither the AI nor the individual giving a solo performance. A mutually dependent partnership, not a rivalry. Synergy, not a zero-sum game. A jazz combo.

As a result, of course, what my synthesiser ends up saying may not be the response, the expressiveness, even the vaguely similar idea, I’d have said unaided. But I keep reassuring my colleagues that I have absolutely no qualms about such collaborative Human-AI technology potentially making me appear cleverer, or funnier, or simply less-forgetful, than I was before. So, in place of ‘Verbal Spontaneity’, read ‘Intelligence Amplifier’. As far as I’m concerned, bring it on!

What are the shortcomings of the technology? Where can it improve?

The technology you see at the end of the documentary is a great setup for throughout the typical day when I’m working in my study, for instance answering your questions. But it’s far from ideal all the rest of the time. So already I’ve started a parallel project with the AI team at the giant IT corporation DXC Technology and a research team at Drexel University. We’re experimenting with a cutting edge augmented-reality visor that projects some supercool computer graphics in front of me, like the head-up display that fighter pilots use. It’s exactly like the way Hollywood portrays the view that a cyborg sees – although, to be fair, my display is unlikely to flash the words ‘ hostile target’.

That’s only the very beginning. All the wild ideas I proposed early in the film are now planned for the next several years. One that we’re just starting is around all aspects of AI controlled movement. As part of this major research challenge, we envision ‘wheelchairs’ taking on far greater responsibility – Robotic Mobility is in reality an AI challenge on wheels. We envision a user outside their house onboard their Wheelchair Accessible Vehicle using their eyes to click on an icon for ‘Bedroom’ and that is it – everything else is automatic until they are safely by their bed. Likewise, even in unfamiliar territory, they should be able to travel fast-but-safely thanks to a sophisticated collision avoidance system. We envision them eventually being able to speed through an obstacle course or safely make their way through a showroom of porcelain vases. [OK, that’s the advanced autonomous driving course.]

Given the R&D costs involved is it realistic to believe this can be made available to other MND patients?

From the start, this was always very much bigger than just me. And very much bigger than just MND.

At the end of the day, as the title of the documentary suggests [the film was originally titled Peter the Human Guinea Pig], I’m just a human guinea pig to try out those of my ideas that would be too risky or unproven or initially unreliable to impose on a member of the public. There is a long tradition of scientists resorting to experimenting on themselves. I am no different. Although in my case, this is literally the experiment of my life.

So, your question cuts to the core of the impact I desperately want to achieve. Frankly, if the only person to benefit from all this is me, then I will consider it a near total failure.

Let me start my answer with a reassuring reminder of what you saw in the film: all of my pioneering surgery did not take place in an American medical institute, or a private healthcare establishment, or even a London teaching hospital. It all took place at my local NHS hospital in Torbay. So that at least is encouraging. And if you’d asked me when filming began how this sort of breakthrough would spread, I would have naively replied that the relevant government bodies and charities and medical communities with responsibilities for extreme disability would have all rallied around.

But by the time we finished, I realised that they needed a bit of help.

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So as filming wrapped, Francis and I set up a charitable research body – The Scott-Morgan Foundation, registered by the Charity Commission (1187386) with the official objective: “For the public benefit, the advancement of science, health and education, by carrying out, promoting and publishing research into the ethical use of artificial intelligence, virtual reality, augmented reality, robotics, and other high-technology systems to enhance the capabilities and wellbeing of those restricted by age, ill health, disability or other physical or mental disadvantage.”

In less official language, every one of us that’s part of The Scott-Morgan Foundation is passionate about using AI and hi-tech to transform what it means to have Extreme Disability, whether through accident or disease or old age. And Francis and I have been unbelievably lucky in being able to interest some of the world’s top brains in getting involved, with a fully independent Board, to act as the focus for a hugely ambitious research program stretching across decades. We’re incredibly proud of it – it’s the only research foundation of its kind in the world. And we hope to attract more and more of the planet’s most free-thinking and innovative corporations and experts to join us in our mission to revolutionise the future of Extreme Disability, and in so doing, change what it means to be human.

Our website will go live on the evening of transmission of the documentary: www.scottmorganfoundation.org

And finally, here is the answer to your question: everything we do at The Foundation is for philanthropic purposes and to benefit the general public; we aim for all our key findings to be made open-source, freely available to everyone. So as far as is possible, I intend that the successful research will eventually benefit everyone. And ultimately, I mean everyone. MND is a great initial research focus because the challenges are so great. But the benefits will reach all extreme disability, even from ‘old age’. One day that may even include you…

The moment in the film when you hear your voice for the first time, singing, is incredibly powerful.  Describe what that moment meant to you.

At school, I was in four choirs. I loved singing. All my life I tended to hum a lot when I was alone. Even sing if no one could hear. Until a bit over a year ago when my lung capacity got so low I could hardly speak, let alone sing. In one sense, losing the ability to sing should have been a trivial event in comparison with everything else I was losing that was truly disabling. However, maybe because it was ‘unimportant’ and only for silly fun since early childhood, it felt hugely symbolic.

What you don’t see in the film is a bit more of the backstory to the moment you refer to. Months earlier, I’d met with [Dr] Matthew Aylett (the world expert on speech synthesis that you see early in the film, he works at Cereproc in Edinburgh ), and I’d said that with the new type of voice we were creating we one day should be able to get it to sing. And he’d agreed, said it was not quite doable yet, but that the perfect song for me would be Pure Imagination, because of the lyrics. He suggested I listen to it. Especially the line that went: ‘Want to change the world? There’s nothing to it.’ Then everything went quiet and I heard nothing more from him. Until I got an email saying to listen to my new voice. Some of my family were visiting at the time, and that’s the moment that was captured on film.

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What you don’t know, but what hit all of us, was that it actually sounded like me singing, even though I had never recorded the words, or ever recorded myself for our research singing a single note. What Matthew and his team had achieved was technically a marvel. But emotionally it was overwhelming. The moment you see on camera is when I gradually realise that all my hopes, all my dreams, really are going to eventually come true. With hindsight, it was the hugely symbolic turning point in my journey.

In 2017 you were told you might only survive two years. You’ve beaten that. What’s a realistic expectation now?

Realistically, I’m in uncharted territory – how cool is that?!? The point is that nearly everyone who dies of MND dies because they can’t eat or they can’t breathe. I’ve had surgery to overcome those hurdles. So what is left to kill me? Well, there is hardly any data. In the UK, a very recent survey conducted by my own NHS respiration expert showed that less than one percent of MND patients choose to have an operation to put a ventilation tube into their lungs. So our sample is already remarkably small. However, the most common reason they die is a form of pneumonia caused by inhaling things like saliva or particles of food straight into the lungs.

But that can never happen to me because I persuaded the amazing NHS ENT surgeon in the film to separate my wind pipe from my throat so I can never have something ‘go down the wrong way.’ This was ground breaking. The only other person with MND that had this sort of surgery in the UK was a patient back in 1985. But that was an emergency, not elective surgery like mine. Coincidentally, it was another scientist. A guy called Stephen Hawking.

So it’s now very unclear whether MND (which the medical textbooks classify as ‘invariably fatal’) will actually get the chance to kill me. Maybe it will be heart disease instead. Or cancer. Both my parents lived till their late nineties. I’ve always stayed slim and fit. And apart from MND, I’m very healthy. So the considered answer to your question is that I may still be around for decades.

And here’s a thought that keeps playing in my mind. Already my diet has improved. I drink no alcohol, and I’m better hydrated (24 hours a day). Thanks to NHS healthcare funding I have people checking me every day. And increasingly I will be able to have technology monitor my life signs 24/7. Maybe, as a result of having MND, I’ll end up living even longer than I would have if I had never contracted it in the first place. Talk about silver linings…

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How would you describe your quality of life now?

You would be forgiven for assuming my quality of life was not ideal. After all, I am answering your questions long after my body stopped working sufficiently well to keep me alive; these days I use sophisticated hi-tech to keep it going for its sole remaining purpose of providing a warm, wet, nutritious environment for my brain. I can no longer move. I can no longer breathe or eat very well or smell or taste properly. I have a heightened sense of touch, but can’t touch anything, so a downside of maintaining redundant limbs is that, although I feel every itch, I can’t scratch a single one. Only my eyes, ears and brain remain active, the three of us trapped together within the apparently claustrophobic straightjacket of our own living corpse.

But you’d be mistaken. Despite these inconveniences, I feel incredibly lucky. I suspect the trick to enjoying total paralysis is simply to imagine you’re in a luxury spa hotel and the maître d insisted you put your feet up and don’t move a muscle. And my overall quality of life is exceptional. I have love. I have fun. I have hope. I have dreams. I have purpose.

Oh, and did I mention, I’m still alive.

I mean really alive. Not just one of the living dead. Not just surviving. Thriving!

I get to luxuriate in constant social interactions with loved ones, family, friends, acquaintances. I get to laugh a lot (at least inside, I can’t physically laugh any more). And I manage to make people laugh. And I get to live in harmony with increasingly sophisticated artificial intelligence that lets me speak in my old biological voice. And I get to express body language with an avatar that looks like me before my facial muscles withered – and which will become exponentially more powerful.

And I’m only just getting going.

What drives you, when many in your situation would have allowed nature to take its course or given nature a helping hand.  Is it a desire to survive or a desire to innovate?

Looking at the film a short while ago, I realised that it actually reveals two stories – the one I’d expected (jaw dropping technology and questions about what it means to be human), and the answer to your question. Which I hadn’t expected, but is in fact far more important to me than the first story.

And ironically, it’s the second story that may be more relatable. I understand that what I have chosen to do may not make sense to everyone. But the reason why I did it will be obvious to anyone who has been in love. Francis and I are into our fifth decade of living as one. That’s all of our adult lives. And much of that time, it was us against the world. Always looking after each other, fighting all comers, back-to-back. Who would now expect me to do anything other than strive with every fibre of my being to still be around for him? From the moment we met, I would willingly have died for him. Now I realise that I will willingly live for him – whatever the cost…

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Do you fear death?

Absolutely not! Only life can be scary.

In truth, over the last three years, death and I have cultivated a healthy disrespect for each other: death keeps knocking at my door; I keep pretending I’m out.

There are many obvious things about your old life that you’ll miss but what simple pleasures should we not take for granted?

Reaching out and touching the people you love. It seems so trivial. So unnecessary. Yet it leaves an aching chasm when it’s gone.

Do you ever get tearful or upset? What are the triggers?

To be fair, I have never been the emotionless Mr Spock type of scientist. Indeed, when the movie Titanic first came out I developed the hypothesis that it was a surefire test of true love because any couple watching it that were meant for each other would inevitably be reduced to blubbing wrecks by the end. A lifetime later, I still get teary at poignant moments in movies. And poignant moments in The Scott-Morgan Show – but to my surprise, these latter triggers are getting fewer, not more frequent as I’d expected.

I had predicted that in the six-months after filming stopped, having recently suffered the trauma of sacrificing my voice, I would go through patches of feeling pitiably sorry for myself. But the wallowing in self-pity never came. I occasionally felt really frustrated that my fancy hi-tech had crashed and I couldn’t make myself understood. It was stressful, certainly. But nothing near traumatic.

To be fair, I spent all my life up till last year speaking far too much. So I’m really now only making up for lost silence. With that said, it would feel awful if (most of the time, when it works) I wasn’t able to generate my own voice using my eyes to spell out the words. Constantly speaking with what is recognisable as my voice, has totally taken the sting out of giving up my biological voice. But why is it that, against all common sense, as I ooze through the final muddy depths towards rock bottom, things are consistently feeling better? A lot better.

All the obvious reasons revolving around Francis, my close family, the team looking after me, technology, unwarranted good fortune. But there is something more, which I consider a crucial discovery. Contrary to the torturous scare stories about how it feels being close to ‘locked-in’, under the right circumstances the brain moves on. It grieves a bit, and then, if you give it the chance, most of the time it forgets. Days may pass when I never once remember that in the past I could walk, or move, or (absurdly) even that I could talk. My brain has its own ‘new normal’. The plasticity of the brain to adapt in this way astounds me. It should also bring tremendous hope to anyone coming to terms with Extreme Disability, let alone MND. It certainly does to me.

The COVID pandemic must have had an impact on how you live your day to day life.  What gives you cause for optimism?

I’ve just given you one immense cause for optimism. And there are others. But as you mentioned the pandemic, let’s start there because I think it’s an example of how you sometimes need to outsmart Fate and create your own causes for optimism.

The beginning of the COVID-19 outbreak was a disruption. I quickly received an official letter saying I was ‘extremely vulnerable’. [This was actually sloppy science because no-one in fact knows how someone with MND and a laryngectomy is likely to react to a spectrum of respiratory infections, because we’ve never had a chance to study it before. But I let that pass.] What was illuminating came from some conversations with the NHS around the same time: even intensive care wouldn’t be able to look after me if I got ill. And no-one could visit us. We were on our own.

So, we turned a liability into an asset and determined to set up our own intensive care unit at home. We were already part way there. When I’d returned from hospital after the second operation in the documentary (when I gave up my voice), we’d been provided by our wonderful NHS with hi-tech equipment ranging from ventilators and cough assist machines to oxygen cylinders, cuff manometers and blood oxygen monitors, so, along with my hospital-style bed, we already had the right props. And, just in case, since my operation Francis had got himself specialist medical training and was probably now one of the very few in the country who was officially signed off to replace the tubing into my bladder, my stomach, my colon, and my lungs.

Also, thanks to NHS continuous healthcare funding, I already had a care team very carefully selected by Francis who we had steadily trained to a high standard; now we upped our game still further. We adopted ICU protocol, with everyone but me dressed in disposable apron, gloves and mask. And we kept progressing from there. Now, if I become seriously ill, we can manage without risk of me blocking an ICU bed. It’s an incredibly secure feeling. All thanks to coronavirus!

And there are far broader causes for optimism. Ever since I knew that my final operation had been a success (I actually got out of hospital in record time), I’ve felt like I got a new lease of life. Realistically, my condition was getting so bad that, because of the form of my deterioration, without that last op, I’d have been unlikely to make it through last winter. Instead, I may now be around for decades. What’s not to feel upbeat about?

Being alive is definitely up there. As is finding myself working seven days a week, harder than at any time in my career. And the extraordinary kindness of strangers should not be a surprise to me, although for some reason in the modern world it is. However, maybe the best thing, or at least the most pleasant surprise, is a bit bizarre. Statistically I should be dead, and according to the relentlessly depressing story of MND that everyone insists on pedalling, I should at the very least be feeling close to suicidal. But instead, I feel alive, excited, I’m really looking forward to the future. I’m having fun!

And the most amazing feeling, my greatest cause of unrelenting optimism, is that thanks to the exponential growth in computing power, things will only get better. Every couple of years that I cheat death, my ability to enjoy life thanks to hi-tech will double. Just imagine what the pandemic would have been like even ten years ago without ubiquitous video conference. The next ten years will see just such leaps forward. And the decade after that. We are moving into extraordinary times.

I intend to be around to see just how far we can push things.

Peter: The Human Cyborg will air on Channel 4 later this month – check out what else is on with our TV Guide