x Abu Dhabi, UAE Friday 21 July 2017

The boy with the bionic arm

Patrick Kane's biggest challenge is not how to use his prosthetic hand, it is how to change people's negative attitudes to disability.

Patrick Kane, 13, is the youngest person to be fitted with a myoelectric, multiarticulating prosthesis - which his family simply calls his bionic hand. Like any science-fiction-crazy teenage boy, he enjoys showing it off.
Patrick Kane, 13, is the youngest person to be fitted with a myoelectric, multiarticulating prosthesis - which his family simply calls his bionic hand. Like any science-fiction-crazy teenage boy, he enjoys showing it off.

It must have been about three hours into my son's first visit to Dubai. Then an energetic nine-year-old, his only thought was the hotel swimming pool, and we hurried down after check-in to take that first liberating dive into the blue water. It was wonderful, but as we relaxed later on sun loungers, I just could not stop myself: "And what do you think YOU'RE looking at?" I shouted at a startled family nearby. They had been staring at my boy from the moment we arrived. I had tried to ignore it, but it kept nagging at me, and they kept staring.

My son Patrick is disabled. When he was nine months old he fell victim to a horrible strain of meningitis. He was close to death for days, unconscious for weeks and in hospital for months. But he pulled through, though at a terrible cost to his infant body. His right leg was amputated below the knee; his left hand lost all the fingers. The disease also damaged the growth plates in the bones of his left arm, leaving it progressively shorter than the right as he grew up. He learnt to walk with a prosthesis (and to swim without one), but as he got older it became more obvious that his left arm was going to be a problem. As a limb, it was practically useless, weak and puny, with no fingers. And people stared.

Patrick didn't particularly like being stared at, but he just got on with life. It was my problem, really, that I found it so annoying. In Dubai, where so much time is spent in the wide outdoors, in shorts and T-shirts, or on the beach, I found it particularly maddening. There were several outbursts from me like the one above. In the UAE, where there is a relatively high incidence of disability at birth, I found the social attitude towards it irritatingly intrusive. It was as though people with disabilities - physical, mental or neurological - were expected to be hidden away from public view; provided for, certainly, by way of big expenditure by the UAE government, charities and individuals, but not accepted fully into everyday life.

But then there is no easy way, for individuals, societies, or governments, to deal with disability. Disabled people the world over have to cope not only with their mental or physical problems, but also with society's ambivalence, which veers from curiosity, to pity, to condescension and (sometimes) to revulsion. The disabled are frequently celebrated (the Paralympics is an obvious example), but often left to handle their problems unaided. Occasionally, they are hidden away as an embarrassment the world would rather forget.

Government policies in virtually every country reflect this uncertainty. Legislation outlaws discrimination against individuals on grounds of disability, but resources to back up these fine intentions are often inadequate. And no amount of legislation can prevent ignorance, or prejudice, or just plain insensitive curiosity. Patrick has largely come to terms with his problems. He is a "normal" early teenage boy who's into music, computers, football and movies. He goes to a "normal" school in London where he does very well academically, and is popular with his "normal" friends. His tough prosthetic leg has earned him a reputation as a fearsome tackler on the football pitch.

Slowly, his approach to disability has changed. Early on, and probably at the prompting of me and his mother Emma, he wanted a skin-coloured cosmetic covering for his leg. We even had an imitation hand made that he could fit over his stump. Made of rubbery plastic, it was a work of art, incredibly life-like, but totally useless. We just wanted him to look as "normal" as possible. Now, he doesn't care. His leg is shocking black carbon fibre with a steel ankle shaft, and he is proud to show it off in shorts and swimming trunks whenever possible. Before he moved to the hyper-cool black, he had a particularly eye-catching multicoloured prosthesis. If you've got it, flaunt it, he seemed to be saying.

Last July, the process went a stage further. Patrick became the youngest person in the world to be fitted with what the medical technicians call a "myoelectric multi-articulating prosthesis". That's the accurate scientific terminology, but we just called it the "bionic hand." It's an impressive bit of kit. A hard-case sleeve is moulded to fit snuggly over his stump. On the inside of this are two electronic sensors touching his skin to detect muscular movement in the lower part of his arm. This is then transformed via battery into electro-mechanical power for the fingers and thumb of the "bionic" limb.

By flexing and relaxing the muscles in a set of co-ordinated movements, he can open and close the fist of the limb, and move the fingers in the fashion of a real hand. With soft clicks and whirrs, it looks and sounds incredibly like a limb belonging to Arnold Schwarzenegger's Terminator robot. The appeal for a science-fiction crazy teenager is obvious. The prosthetic is called the i-LIMB Pulse, and is manufactured by a company based in Livingstone, just outside Edinburgh, called Touch Bionics. The company has its origins in a medical scandal of the 1960s, when pregnant mothers were prescribed a "harmless" drug called thalidomide to prevent morning sickness. Marketed in Britain by a Scottish company, the drug actually caused hundreds of babies to be born with shocking deformities. Scottish health authorities ordered research and development of prosthetic equipment to mitigate the scandal, and this project was spun off from government ownership to become Touch Bionics in 2003.

After an initial consultation, Patrick and I travelled to Scotland together with an air of great excitement. If it all worked out, he would at last have a functioning hand on his left arm. But there were obstacles to overcome. The i-LIMB has been fitted to around 1,400 amputees since it was developed in 2007, but the vast majority of these were adults who had some recollection of using their limbs normally.

Many are former US servicemen who lost limbs in Iraq and Afghanistan. Touch Bionic's cutting edge technology has been appreciated, and paid for on behalf of patients, by the US military authorities from the outset. Other governments are not so generous. (Touch Bionics says, incidentally, that it has received a great deal of interest in its product from the Middle East, and is considering opening an office in the Gulf to deal with this demand.)

Patrick would be the youngest, and smallest person to have the limb fitted. Would he be able to master the tricky muscle co-ordination required to drive the fingers? Could the Touch Bionic technicians pack all the necessary equipment - electro-mechanical parts, batteries, wiring - into the "sleeve" section of the limb? Would the limb be too heavy for a boy who had never used his left arm properly?

After five days of training and therapy, the answers to those questions were all positive. Patrick learnt to operate the limb easily, impressing the prosthetic therapists with the speed with which he mastered the techniques. The highlight came mid-way through when, for the first time in his life, he tied his shoelace - alone and unassisted. Such a mundane task, yet there was a real and very emotional sense of achievement, as there was, too, when he later cut his dinner steak, or picked up a coffee cup. Accomplishing everyday chores like these became occasions of pride, for him and for me.

The finished limb was practical, functioning - and very impressive to look at. He rejected the cosmetic imitation skin (though this is convincing and available) and went straight for the Terminator look. Matching his leg in jet-black carbon fibre, Patrick is the "bionic boy", and proud of it. There are serious lessons here for how we all deal with disability. The first is to embrace the best technology possible. Fitting an i-LIMB, at £20,000 (Dh113,000) a tißme, will not be possible for every disabled person, but governments and health-care authorities should consider greater investment in this area. If a relatively small company such as Touch Bionics can develop such a hi-tech solution to disability on comparatively slender resources, how much better, and more affordable, could the product be with positive promotion by the authorities and greater financial investment by the big medical technology companies?

The second lesson requires a psychological shift that may be more difficult than the first. Disability is partly a state of mind for its victims, and all those affected by it. My boy will always have to live with its effects, but his life has been made vastly more tolerable thanks to technological advances, and to his own stubborn determination to have as "normal" an existence as possible. It is up to the rest of us to see the person before the disability.

Patrick goes back to school in a few days' time, his first opportunity to show his friends the brand new, hi-tech limb of which he is so proud. This time, he will not mind at all if they stare.