The divided self: "Portrait in Ruby and Blue" (2012) by Daniel Gordon. Image: Daniel Gordon Studio
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The agony and the ecstasy

The creative power of illness.

The first time I experienced severe physical pain, I was 13 years old. It was a new sensation: nauseating, deep and gnawing; centred in my abdomen and the base of my spine, it also radiated down both legs. I lay on the floor of the lounge, one moment curled on my side like a comma, my knees pulled up to my chest; the next on my back; the next on my front with my legs spread as wide as they would go. None of these positions brought relief. I was vaguely aware of shaking and of being unable to talk. My skin, I learned later, was so unnaturally pale that had I not been moving, I might have been taken for dead.

More than a decade of similar episodes followed, until, aged 26, I was diagnosed with endometriosis. I still have the condition today, and sometimes, in the middle of a bad episode, I have longed not to exist. But always after the pain comes the gradual, miraculous release from pain, and with it the sense that my stay in that other strange realm to which illness transports us is by no means over. It seems to me that these periods are vacations, in the truest sense of the word – intermissions, voids, times in which my normal life has in effect been emptied of my presence.

Most people have never seen me suffering: a few (ambulance staff, doctors, night cleaners) have never seen me well. It is as if, since the age of 13, a secret self has existed alongside my everyday self; one for whom, from time to time, the so-called real world, with all its duties and dreary preoccupations, ceases to be. It’s striking how often the notion of the divided self crops up in relation to physical illness. Sometimes the division is literal, as described here by Dorothy Molloy in the title poem of her collection Gethsemane Day:

They’ve taken my liver down to the lab,
left the rest of me here on the bed;
the blood I am sweating rubs off on the sheet,
but I’m still holding on to my head.

Sylvia Plath also presents an account of the self splitting into two while undergoing medical treatment. In December 1952, she found herself in hospital after breaking her leg in a skiing accident. Her response, “In Plaster”, details a struggle between two different selves:

I shall never get out of this! There are two of me now:
This new absolutely white person and the old yellow one,
And the white person is certainly the superior one.

Superior, it transpires, only inasmuch as the plaster self doesn’t need food to sustain it and is “whiter and unbreakable and with no complaints”. But it is the old, yellow self that plays host to this gleaming other. Clearly, we’re in the realms of metaphor: Plath believed that a life lived by a false self or selves was both cowardly and senseless; time and again her poems propound the wisdom of shedding false identities.

Much has been made of the link between creativity and mental illness, but the link between physical illness and the creative life, though less discussed, is just as significant. For some artists, it led directly to a choice of career. Matisse – famous for his intense, saturated colours that seem to blaze with life – initially studied law and had begun work as a court administrator when an attack of appendicitis forced him to take time out. His mother bought him art supplies to keep him occupied during his convalescence and it was only then that he made his first paintings. His subsequent decision to quit law and become a painter was, it is said, the cause of deep disappointment for his father.

Hilary Mantel, a fellow endometriosis sufferer, believes the disease was at least partly responsible for her choice to become a writer, as she explains in an interview at the back of her memoir, Giving Up the Ghost: “A lot of people know they’re going to be writers when they’re children, but I made a conscious decision to become one when I was 22, when, because of my poor health, I saw other career prospects slipping away from me.”

Like Matisse, Mantel read law at university but her studies were interrupted by severe episodes of pain that resulted in a succession of inappropriate medication. She explains, “It was in the nature of educated young women, it was believed, to be hysterical, neurotic, difficult, and out of control, and the object was to get them back under control . . . by giving them drugs which make them indifferent to their mental pain – and, in my case, indifferent to physical pain too.”

Baffled by the symptoms, Mantel’s doctors seem to have resorted to a sort of annihilation of the self. Though the circumstances aren’t usually so extreme, the sensation of surrendered identity is a common reaction to medical intervention – as the bed-ridden speaker in Sylvia Plath’s “Tulips” describes:

I have given my name and my day-clothes up to the nurses
And my history to the an aesthetist and my body to surgeons.
They have propped my head between the pillow and the sheet-cuff

Like an eye between two white lids that will not shut.

This feeling is by no means the preserve of female writers. In 2006, in County Donegal, the Nobel laureate Seamus Heaney suffered a stroke that he wrote about in his most tender collection, Human Chain. In conversation with the Observer, he explained, “The trip in the ambulance I always remember because Marie [Heaney’s wife] was in the back with me . . . To me, that was one of the actual beauties of the stroke, that renewal of love in the ambulance. One of the strongest, sweetest memories I have.” In “Chanson d’Aventure”, he describes that same journey: here, the speaker’s sense of powerlessness is powerfully expressed in a series of passive verbs, as he finds himself

Strapped on, wheeled out, forklifted, locked
In position for the drive
Bone-shaken, bumped at speed

Later in the same poem, Heaney finds himself reflecting on the word bell:

. . . the one I tolled in Derry in my turn
As college bellman, the haul of it there still
In the heel of my once capable

Warm hand, hand that I could not feel you lift
And lag in yours throughout that journey
When it lay flop-heavy as a bellpull.

The merging of present and past that Heaney articulates here is another familiar feature of illness. In the midst of severe pain it is difficult to be anywhere except the present, but at times of injury or shock it is common for different time phases to merge.

Disease can open up unique perspectives for the sufferer and a surprising amount of the work that makes up our artistic canon has emerged from it – work that would otherwise never have existed. An obvious example is Paradise Lost, dictated by Milton after he had lost his sight completely.

More poignant still is the story of Mahler’s Ninth Symphony. In middle age, and shortly after the death of his young daughter, Mahler learned that his heart was defective. The first movement of the symphony opens with a tentative, syncopated rhythm that many, including Leonard Bernstein, have suggested echoes the composer’s irregular heartbeat. The motif returns seven times over the course of the movement until, at its climax, it arrives as a sudden intrusion, as Bernstein put it, of “death in the midst of life”. This time it is announced by trombones, underpinned by a booming bass drum and marked in the score mit höchster Gewalt (“with the greatest violence”) – as if death must finally have its say.

My latest poetry collection, The World’s Two Smallest Humans, concludes with an assertion of life – a sequence of poems based on the IVF treatment I received for fertility problems related to endometriosis. The sequence is fictional but the two smallest humans of the title are real enough: there is an extraordinary moment during the IVF process when the embryologist walks into the treatment room with your live embryos attached to the end of a pipette. In she walks, in a little scrub cap and tunic, looking more like a bakery worker than someone who is carrying in her latex-gloved hands the smallest human beings possible. Moments later, those same beings are transferred to the patient’s womb to do their best.

After three operations, my worst pain episodes are few and far between, but they still occur. The most recent happened a few months ago. The two-person ambulance crew that arrived at my cottage door in the dead of night was led by a woman called Jo, for whose professionalism and compassion I shall be eternally grateful.

Philip Larkin said of ambulances, “They come to rest at any kerb:/All streets in time are visited.” According to the poem, a journey in an ambulance signals the end, first of our identity and then our existence: such a trip, the poem concludes, “Brings closer what is left to come,/And dulls to distance all we are.”

That may be true but more often than not it is a temporary truth: Larkin’s poem wilfully disregards the possibility of recovery. In some ancient cultures there is a deity for illness, which strikes me as refreshingly clear sighted. If such a god existed for us today, I would be glad of the chance to offer up a prayer of thanks for the rich crop of art he has nurtured into being.

Julia Copus’s recent collection, “The World’s Two Smallest Humans”, was shortlisted for the T S Eliot Prize and the Costa Book Awards

This article first appeared in the 28 January 2013 issue of the New Statesman, After Chavez

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Are smart toys spying on children?

If you thought stepping on a Lego was bad, consider the new ways in which toys can hurt and harm families.

In January 1999, the president of Tiger Electronics, Roger Shiffman, was forced to issue a statement clearing the name of the company’s hottest new toy. “Furby is not a spy,” he announced to the waiting world.

Shiffman was speaking out after America’s National Security Agency (NSA) banned the toy from its premises. The ban was its response to a playground rumour that Furbies could be taught to speak, and therefore could record and repeat human speech. “The NSA did not do their homework,” said Shiffman at the time.

But if America’s security agencies are still in the habit of banning toys that can record, spy, and store private information, then the list of contraband items must be getting exceptionally long. Nearly 18 years after TE were forced to deny Furby’s secret agent credentials, EU and US consumer watchdogs are filing complaints about a number of WiFi and Bluetooth connected interactive toys, also known as smart toys, which have hit the shelves. Equipped with microphones and an internet connection, many have the power to invade both children’s and adults’ private lives.

***

“We wanted a smart toy that could learn and grow with a child,” says JP Benini, the co-founder of the CogniToys “Dino”, an interactive WiFi-enabled plastic dinosaur that can hold conversations with children and answer their questions. Benini and his team won the 2014 Watson Mobile Developer Challenge, allowing them to use the question-answering software IBM Watson to develop the Dino. As such, unlike the “interactive” toys of the Nineties and Noughties, Dino doesn’t simply reiterate a host of pre-recorded stock phrases, but has real, organic conversations. “We grew it from something that was like a Siri for kids to something that was more conversational in nature.”

In order for this to work, Dino has a speaker in one nostril and a microphone in the other, and once a child presses the button on his belly, everything they say is processed by the internet-connected toy. The audio files are turned into statistical data and transcripts, which are then anonymised and encrypted. Most of this data is, in Benini’s words, “tossed out”, but his company, Elemental Path, which owns CogniToys, do store statistical data about a child, which they call “Play Data”. “We keep pieces from the interaction, not the full interaction itself,” he tells me.

“Play Data” are things like a child’s favourite colour or sport, which are used to make a profile of the child. This data is then available for the company to view, use, and pass on to third parties, and for parents to see on a “Parental Panel”. For example, if a child tells Dino their favourite colour is “red”, their mother or father will be able to see this on their app, and Elemental Path will be able to use this information to, Benini says, “make a better toy”.

Currently, the company has no plans to use the data with any external marketers, though it is becoming more and more common for smart toys to store and sell data about how they are played with. “This isn’t meant to be just another monitoring device that's using the information that it gathers to sell it back to its user,” says Benini.

Sometimes, however, Elemental Path does save, store, and use the raw audio files of what a child has said to the toy. “If the Dino is asked a question that it doesn’t know, we take that question and separate it from the actual child that’s asking it and it goes into this giant bucket of unresolved questions and we can analyse that over time,” says Benini. It is worth noting, however, that Amazon reviews of the toy claim it is frequently unable to answer questions, meaning there is potentially an abundance of audio saved, rather than it being an occasional occurrence.

CogniToys have a relatively transparent Privacy Policy on their website, and it is clear that Benini has considered privacy at length. He admits that the company has been back and forth about how much data to store, originally offering parents the opportunity to see full transcripts of what their child had been saying, until many fed back that they found this “creepy”. Dino is not the first smart toy to be criticised in this way.

Hello Barbie is the world’s first interactive Barbie doll, and when it was released by Mattel in 2015, it was met with scorn by parents’ rights groups and privacy campaigners. Like Dino, the doll holds conversations with children and stores data about them which it passes back to the parents, and articles expressing concerns about the toy featured on CNN, the Guardian, and the New York Times. Despite Dino’s similarities, however, Benini’s toy received almost no negative attention, while Hello Barbie won the Campaign for a Commercial-Free Childhood’s prize for worst toy of the year 2015.

“We were lucky with that one,” he says, “Like the whole story of the early bird gets the worm but the second worm doesn’t get eaten. Coming second on all of this allowed us to be prepared to address the privacy concerns in greater depth.”

Nonetheless, Dino is in many ways essentially the same as Hello Barbie. Both toys allow companies and parents to spy on children’s private playtimes, and while the former might seem more troubling, the latter is not without its problems. A feature on the Parental Panel of the Dino also allows parents to see the exact wording of questions children have asked about certain difficult topics, such as sex or bullying. In many ways, this is the modern equivalent of a parent reading their child's diary. 

“Giving parents the opportunity to side-step their basic responsibility of talking to, engaging with, encouraging and reassuring their child is a terrifying glimpse into a society where plastic dinosaurs rule and humans are little more than machines providing the babies for the reptile robots to nurture,” says Renate Samson, the chief executive of privacy campaign group Big Brother Watch. “We are used to technology providing convenience in our lives to the detriment of our privacy, but allowing your child to be taught, consoled and even told to meditate by a WiFi connected talking dinosaur really is a step in the wrong direction.”

***

Toy companies and parents are one thing, however, and to many it might seem trivial for a child’s privacy to be comprised in this way. Yet many smart toys are also vulnerable to hackers, meaning security and privacy are under threat in a much more direct way. Ken Munro, of Pen Test Partners, is an ethical hacker who exposed security flaws in the interactive smart toy “My Friend Cayla” by making her say, among other things, “Calm down or I will kick the shit out of you.”

“We just thought ‘Wow’, the opportunity to get a talking doll to swear was too good,” he says. “It was the kid in me. But there were deeper concerns.”

Munro explains that any device could connect to the doll over Bluetooth, provided it was in range, as the set-up didn’t require a pin or password. He also found issues with the encryption processes used by the company. “You can say anything to a child through the doll because there's no security,” he says. “That means you've got a device that can potentially be used to groom a child and that's really creepy.”

Pen Test Partners tells companies about the flaws they find with their products in a process they call “responsible disclosure”. Most of the time, companies are grateful for the information, and work through ways to fix the problem. Munro feels that Vivid Toy Group, the company behind Cayla, did a “poor job” at fixing the issue. “All they did was put one more step in the process of getting it to swear for us.”

It is one thing for a hacker to speak to a child through a toy and another for them to hear them. Early this year, a hack on baby monitors ignited such concerns. But any toy with speech recognition that is connected to the internet is also vulnerable to being hacked. The data that is stored about how children play with smart toys is also under threat, as Fisher Price found out this year when a security company managed to obtain the names, ages, birthdays, and genders of children who had played with its smart toys. In 2015, VTech also admitted that five million of its customers had their data breached in a hack.

“The idea that your child shares their playtime with a device which could potentially be hacked, leaving your child’s inane or maybe intimate and revealing questions exposed is profoundly worrying,” says Samson. Today, the US Electronic Privacy Information Center (EPIC) said in a statement that smart toys “pose an imminent and immediate threat to the safety and security of children in the United States”. 

Munro says big brands are usually great at tackling these issues, but warns about smaller, cheaper brands who have less to lose than companies like Disney or Fisher Price. “I’m not saying they get it right but if someone does find a problem they’ve got a huge incentive to get it right subsequently,” he says of larger companies. Thankfully, Munro says that he found Dino to be secure. “I would be happy for my kids to play with it,” he says. “We did find a couple of bugs but we had a chat with them and they’re a good bunch. They aren’t perfect but I think they’ve done a hell of a lot of a better job than some other smart toy vendors.”

Benini appears alert to security and the credibility it gives his company. “We took the security very, very seriously,” he says. “We were still building our systems whilst these horror stories were coming about so I already set pipelines and parameters in place. With a lot of devices out there it seems that security takes a backseat to the idea, which is really unfortunate when you’re inviting these devices into your home.”

As well as being wary of smaller brands, Munro advises that parents should look out for Bluetooth toys without a secure pairing process (ie. any device can pair with the toy if near enough), and to think twice about which toys you connect to your WiFi. He also advises to use unique passwords for toys and their corresponding apps.

“You might think ‘It's just a toy, so I can use the same password I put in everything else’ – dog’s name, football club, whatever – but actually if that ever got hacked you’d end up getting all your accounts that use that same password hacked,” he says.

Despite his security advice, Munro describes himself as “on the fence” about internet-connected smart toys as a whole. “Most internet of things devices can be hacked in one way or another,” he says. “I would urge caution.”

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Is all of this legal? Companies might not be doing enough ethically to protect the privacy of children, but are they acting responsibly within the confines of the law?

Benini explains that Dino complies with the United States Children's Online Privacy Protection Act (COPPA) of which there is no real equivalent in the UK. COPPA says that companies must have parental permission to collect personal information over the internet about children under 13 years of age. “We’ve tried to go above and beyond the original layout of COPPA,” says Benini, when describing CogniToys transparent privacy documents. Parents give their consent for Elemental Path to collect their children’s data when they download the app that pairs with the toy.

Dino bears a striking similarity to Amazon Echo and Google Home, smart speakers that listen out for commands and questions in your home. Everything that is said to Amazon Echo is recorded and sent to the cloud, and an investigation by the Guardian earlier this year discovered that this does not comply with COPPA. We are therefore now in a strange position whereby many internet of things home devices are legally considered a threat to a child’s privacy, whereas toys with the same capabilities are not. This is an issue because many parents may not actually be aware that they are handing over their children’s data when installing a new toy.

As of today, EU consumer rights groups are also launching complaints against certain smart toys, claiming they breach the EU Unfair Contract Terms Directive and the EU Data Protection Directive, as well as potentially the Toy Safety Directive. Though smart toys may be better regulated in Europe, there are no signs that the problem is being tackled in the UK. 

At a time when the UK government are implementing unprecedented measures to survey its citizens on the internet and Jeremy Hunt wants companies to scour teens’ phones for sexts, it seems unlikely that any legislation will be enacted that protects children’s privacy from being violated by toy companies. Indeed, many internet of things companies – including Elemental Path – admit they will hand over your data to government and law enforcement officials when asked.

***

As smart toys develop, the threat they pose to children only becomes greater. The inclusion of sensors and cameras means even more data can be collected about children, and their privacy can and will be compromised in worrying ways.

Companies, hackers, and even parents are denying children their individual right to privacy and private play. “Children need to feel that they can play in their own place,” says Samson. It is worrying to set a precedent where children get used to surveillance early on. All of this is to say nothing of the educational problems of owning a toy that will tell you (rather than teach you) how to spell “space” and figure out “5+8”.

In a 1999 episode of The Simpsons, “Grift of the Magi”, a toy company takes over Springfield Elementary and spies on children in order to create the perfect toy, Funzo. It is designed to destroy all other toys, just in time for Christmas. Many at the time criticised the plot for being absurd. Like the show's prediction of President Trump, however, it seems that we are living in a world where satire slowly becomes reality.

Amelia Tait is a technology and digital culture writer at the New Statesman.