Written Commission: In Heaven, I’d Be BlindJonathan Craig

“Have you been told about the great hope that one day you will see?”

The woman, middle aged I’d guess, sits cross-legged on the mat. Is she looking steadily into my eyes? I can’t tell, but I’m probably not looking back. I’ve never been great at that sort of thing. Between us, the screen door, which I’ve pointedly left closed.

Calm and serene, she’s unaware of her miscalculation. Behind her though, I perceive for the first time her shy young cadet, revealed by uncomfortable fidgeting. Is she aware that she’s just seen the Jehovah’s Witness equivalent of her general stepping on a landmine? Or is every encounter with the lost equally painful for her?

I try to be patient, as I explain that I’m too busy to wish for sight, as I work through the surprise that yes, I have a job. I believe I have a responsibility to make a difference in the world. Besides, if miraculous healing was part of God’s plan, wouldn’t He have done it by now?

The general apologises. She wasn’t clear. What she means is that when I die, if I’m anointed, I will go to Heaven, and become a perfect spiritual being with no defects. She appears to believe that suggesting I should look forward to my death will help me understand her better. The cadet hangs back, ready for a quick retreat.

As usual when I need to concentrate, my thoughts won’t line up or stay on task. They mill about chatting and bumping into each other unhelpfully. The knock at the door had interrupted my reading of Grace Chan’s Every Version of You, a science fiction novel about a different kind of heaven, a post-scarcity digital paradise.

Mind uploading is the theoretical process of translating the entire content and makeup of the human brain into computer code. This is one of the options proposed by transhumanism, a movement which aims to help us escape our biological limitations, and defeat death.

The idea is that when we’re about to die, we’ll be converted into digital versions of ourselves, which live in the cloud. It might be possible to then transfer us into new bodies. But given that the Earth is already over-populated, immortality would be much more sustainable if we ran our uploads in a virtual reality, where food and space weren’t at a premium.

In his new book, The Singularity is Nearer, futurist and Director of Engineering at Google, Ray Kurzweil stood by his 2005 prediction that mind uploading will be possible by 2045. He suggests that advancements in neuroscience, artificial intelligence, and nanotechnology will allow for the complete mapping and digitalisation of the human brain, enabling consciousness to be transferred to a digital substrate.

Many scientists are far more sceptical of this vision, which essentially relies on the idea that the brain is merely a complex computer, and all we need to create is the equivalent of a USB port to transfer data at sufficient resolution. Anyone who has worked with the human brain understands that much about its operation is still mysterious to us, despite decades of data.

If you’ve ever gone through the process of picking an SSRI (Selective serotonin reuptake inhibitor), you’ve probably suspected at least once that your clinicians are almost as in the dark as you are about which will help most and what the side-effects will be. And that’s not considering questions about whether consciousness is a function of biology, or something more spiritual, about whether reverse engineering the brain could reveal the workings of the soul.

Nonetheless, I have personal reasons to take Kurzweil seriously. In his early career he created the first practically useful software for Optical Character Recognition (OCR), the translation of writing into digital text. This led to the development of the Kurzweil reading machine, which would let a user place a page of text on a scanner and have it read aloud to them.

I was too young to use, or even see, the original reading machine, but decades later in school, I accessed books and worksheets using the software named after him, connected to newer versions of the speech synthesiser and flatbed scanner, both invented to make his machine viable. As a young man, Kurzweil solved a difficult problem and laid the foundations for future innovations. The proven clarity of his vision, to my mind, gives extra weight to his predictions.

The next innovation in assistive technology might be even more revolutionary, and co-incidentally, might help with the whole brain USB port issue. Neuralink’s Blindsight project aims to implant a microchip in the visual cortex, which would stream picture from camera glasses into the brain. If it works, this will be profoundly empowering for people with vision loss. I’ve witnessed the grief, fear and despair people feel when they lose something they’ve had all their life. I welcome any breakthrough which might spare someone that feeling.

I suspect the general at my door wasn’t the type to follow Elon Musk. If she were, she might have worried that an Earthly cure might have weakened her argument for conversion. Or she might have felt this was God working out His plan through men. But she probably wouldn’t have suspected that this device holds no appeal for me.

Because I’ve never had sight, I would have no way to process the sudden input of visual data. I would spend years learning to associate the shape of an apple with the feel of one, to accurately assess distance and depth, to distinguish people from shadows. I’d be a child again, laboriously sounding out Dick and Jane. Maybe, eventually, I would gain some extra independence from all this indignity. And there would be much rejoicing, for I’d be cured!

God isn’t limited by neurology. She could simply snap Her fingers and give me the full, unadulterated experience of sight. In John Chapter 9, Jesus meets a man who was blind from birth, spits in some mud, and tells him to rub it in his eyes. After washing the mud off, the blind man can see. He is immediately able to recognise friends and neighbours, so clearly doesn’t require any adjustment period. If only it were so easy these days.

Theoretically, there are also technical workarounds to this problem. At the point where we can simulate the human brain, we might also be able to adapt it. If I chose to upload, I could then essentially receive digital brain surgery. My visual cortex could be substituted for a standard issue one, and a memory of learning to see in childhood copied in to make it useful.

But recent research has revealed that the visual cortex of a blind person is repurposed for other tasks rather than remaining unused and the way we adapt is highly individual. Visual brain activity for a sighted person is pretty consistent. The visual cortex of a person born blind is as unique as a fingerprint.

If my brain were renovated, the pathways my thoughts travel redirected, how would that change me? How would it feel to alter the familiar rhythm of my mind? In the book of John, the Pharisees summon various people to verify the miracle. Obviously the sighted dude who emerged from the water is the same guy who went in blind, or the story would make no sense. But after such a profound transformation, who would I be?

I may have the chance to find out in my lifetime. Elderly or terminally ill wealthy people will be the first to access any potential mind uploading technology. Disabled people could well be close behind. The National Disability Insurance Scheme (NDIS) is a world first, empowering approach to disability support, which despite inevitable teething issues, every Australian should be proud of. But a decade on from its introduction, public support for the scheme is wavering. Almost daily, I see news stories saying it, and by extension we, are too expensive.

Whether or not the NDIS survives the next two decades, I know how governments react to mounting financial pressures, like those we know are on the horizon – climate change and job insecurity being the most obvious examples. They will weigh up the unpredictable costs of a lifetime of care against the one-off investment in a subsidised brain scan. “Discover the ultimate choice and control by being pioneers on the digital frontier! It’s reasonable. It’s necessary. For King and country. For your own good.”

If your life has led you to my words, you’re probably shocked and appalled by the idea of a future government encouraging the mass suicide of disabled people. If you imagine such a thing could never happen, you’ve clearly not heard “I’d rather be dead than blind” half as much as I have. And that’s in relation to a disability which, according to the NDIS, causes relatively minimal functional impairment.

Technology designed to help people escape death would very quickly be repurposed to help people escape difficult lives. In an era where we’re defined more and more by our minds rather than our bodies, the idea of leaving behind inferior meat could become widely accepted.

Australian moral philosopher and animal rights activist Peter Singer has argued that infanticide should be legal for severely disabled babies. When originally proposing this in the 1970s he was discussing infants with spina bifida, which is now largely eliminated. Pressed on the issue recently, he stood by his original contention, though he was unwilling to specify what severe disability he meant. Anyway, if you can humanely mercy kill a baby, then still raise it like a Tamagotchi in VR, everyone wins, right?

When I was born, I was initially misdiagnosed. A doctor told my parents I would be “blind, deaf and dumb”. His words, not mine. Had that been the case, I know they would have loved me just the same. But were I born in the bright future of 2045, they might have faced a more complex choice about how to love me best.

Relegating the disabled to cyberspace is all very well if it’s a fun place to hang out. The virtual worlds in The Matrix or in Black Mirror episode “San Junipero” are almost indistinguishable from reality. But given where we are now, that level of immersion seems just as big a leap as the hard problem of consciousness.

Most VR experiences I’ve attempted rely pretty much entirely on visual tricks to convince the user they’re somewhere else. Sound is an afterthought. The sighted version of VR hell is approaching what looks like a thriving forest only to realise up close that it’s the same four trees on repeat. My version is living forever, but in mono.

In the world of the National Disability Upload Scheme, healthy people could keep their physical bodies if they chose. But those whose bodies were imperfect and/or costly would be sent to a half-life in the cloud. There might be no taste, smell or touch, but there’s also no pain and suffering. In the new VR institutions, people could finally be free of their disabilities. I can’t wait!

The wall between transhumanism and eugenics has always been thin. In 1997, Nick Bostrom, co-founder of Humanity+, formerly the World Transhumanist Association, wrote an email complaining that the statement “blacks are more stupid than whites” could be mistaken for racism. In a recent apology he repudiated his “disgusting email”, but then tied himself up in knots trying to explain his current views.

The writers of the Humanity+ mission statement are better at PR. “Humanity+ advocates for the ethical use of technology and evidence-based science to expand human capabilities. We want people to be better than well.” They discuss the need to clear up misconceptions about transhumanist thought, e.g. they’re definitely not eugenicists. “Often opinions are made that are based on errors in both academic works and mainstream articles that skim off the top of faulty information without checking for accuracy,” they say.

Interestingly, they use the example of the smartphone, which made previously expensive technologies affordable for most of the world’s population. Most blind people would agree that the smartphone has caused profound improvements in our quality of life in the last decade. It’s a great example of how new technology can benefit us.

I hope that Neuralink’s interfaces, now available to only a few test subjects, will one day be within reach of anyone who needs them. When you watch that video of a man playing chess with his brain, you can clearly see its value. At the same time, I’m aware of Elon Musk’s history of interesting decisions regarding disability, such as:

1. Firing the entire Twitter accessibility team, with the result that for months it was impossible for a blind person to independently create an account
2. Accusing a recently fired Twitter employee of taking advantage of his disability to avoid work
3. Using Tourette’s as an insult against another fired Twitter employee
4. Complaining about the fun police after the US Government prohibited electric vehicle users from changing the sounds their cars made at low speeds, and of course
5. Endorsing a US Presidential candidate who told a father to let his disabled son die and move to Florida

Then again, I think any technology can outlive its creator’s blind spots. It’s hard to tell if Kurzweil has much awareness of his impact on the blind community. For him, the reading machine might well have been just an interesting theoretical challenge, a fun way to prove his metal.

I also think the intentions, and even the early results, of Neuralink are clearly good. And who am I to question the transhumanist intention of freeing people from pain and suffering? A person with full body paralysis, who has never been able to speak, and must rely on people 24/7 for their entire life, might feel my reservations are a luxury of my privilege.

Who am I to pretend that even the minor suffering I’ve experienced and my partial dependence on others, hasn’t led me to dream of freedom?

When the correct diagnosis finally arrived, it was good and bad news for my parents. No, I wasn’t Deaf. Dumb would remain on the table for a while yet. But I wasn’t only blind. My rare genetic condition, which effects around one in 2 million people, also caused brittle bones.

I think I probably fell about as often as most blind children, but usually at a higher cost. As I grew up, I learned caution, and got into the habit of careful risk assessment. From age 13, I managed to avoid a fracture for 20 years.

My streak was broken by a new medication, ironically designed to maintain my bone density, which caused an unexpected dizzy spell. The little finger on my left hand, caught under a slat of the dining table as I fell backward, cleanly snapped just after the last knuckle. The ring finger next door was also injured. I never felt that first familiar flash of pain. In the moment before the break, the cool shock of a fast faint flowed over me, parting mind from body.

It still surprises me how mechanically bones are treated. In the first attempt to “stabilise” the fracture, the doctor numbed my hand and tried to manually move the broken tip into the correct position, based on what she saw from the Xray. Having failed, the next step was surgery to connect the tip to the rest of the finger using a very thin wire, so the bone, now touching, could knit back together.

The wire was more successful. The bone had healed, though incorrectly, the finger permanently misshapen. Meanwhile, the ring finger had inexplicably swollen and locked up. So they prescribed more mechanical work – splints which would be regularly remoulded to straighten the finger joints through brute force.

We managed incremental improvements, but as soon as we removed the splints, both fingers sprung back to their new, bent positions. Perplexed and defeated, the hand therapy team eventually discharged me. They explained, very gently and kindly, that given funding constraints, it was hard to justify ongoing treatment for such a minor injury.

Two fingers might not seem like much, but my hands were the part of me I was most proud of. I was scared for a long time to play again, worried my musical dexterity would be permanently ruined. I tried not to notice the strange way my new fingers moved, but of course I use my hands for everything. There was no escape.

All this was close to the surface as I went to answer the door, as I listened to these two women, come to offer me hope. In the moment, I could articulate very little of what came to mind. It was easy enough to explain that sight wasn’t the lifeline they thought it was. Harder perhaps to describe how nice it would be to take a tumble and come up smiling.

My minor injury was a reminder of my fragility. It helped me remember that our bodies are complex, and doctors may do their best but often, especially in my case, they have no idea what will happen when they try something. The physical world isn’t like a computer program. There are too many variables to calculate. Results are unpredictable.

It doesn’t matter what kind of heaven you believe in. Maybe it’s a digital afterlife where you live in a video game. If you mess up and break something, you can just respawn, with whatever avatar you choose. You can even stay disabled if you want. Maybe it’s something more like the Bible describes, where you hang out in an endless paradise with God and the angels and your grandparents and their grandparents, and somehow it never gets awkward. Wherever you hope to end up, right now, we live on Earth.

The general thought she was being empathetic when she talked about my life as a period of pain I must endure before I get to the good bit. I’m not sitting here waiting around to die. But that’s not because I’m “such an inspiration”. Most people, when given a life, choose to live it. This is human nature.

In that life they accumulate a vast range of experiences, of which disability may be just one. It’s the one I’ve focused on in this piece, to show you that I know what I’m talking about. And yes, my disability probably does impact me a great deal. But it’s only one of the thousands of things that influence my worldview.

Some disabled people believe in God. Others can see only the incredible harm organised religion has done to our community. Some are very content with their bodies, while others rail against them and would eagerly take up any new freedom they’re offered. Some are early adopters, some are luddites. Some don’t know what they think.

If there’s one thing we all have in common, whether or not we can articulate it, it’s that we’re all people. And we want to be seen as people. We aren’t defined by how much we cost, or how much we suffer. And we know better than anyone else how we want to live. Like anyone, we want choice. We want to control our own destiny.

The influence of religion may be waning, but the influence of technologists is on the rise. Both belief systems encourage charity and empathy for the disabled, but both also sometimes rob us of autonomy and silence our voices. Certainly, people who subscribe to either philosophy are eager to use us as props in the stories they tell about how the world is and should be.

I have no idea whether mind uploading is a viable technology. However clever Ray Kurzweil has been in the past, the idea that in the next two decades we’re going to overcome all the barriers and store humans in the cloud could ultimately be just tech bro science fiction.

Science fiction claims to be about the future, but it’s usually about the present. I hope that discussing how this technology could play out might help give some people new ways into the conversation about attitudes towards disability. Yes, we’re doing better than ever before, but if you think my scenarios are too cynical, I envy your naivety.

Our recent Disability Royal Commission recommended laws against involuntary sterilisation of disabled people. In Australia, that is still legal. It may not be common and it’s certainly not common knowledge, but somewhere, it’s happening, right here, right now. I’m sure the people doing it think it’s “for their own good”.

We have a lot of work ahead of us. And 20 years is not a long time.