A hot, cross conundrum

The inability to carry out simple actions such as drinking a cup of tea can be hugely frustrating for disabled people.

‘The prime function of design is to solve problems,’ said Victor Papanek in Design for the Real World. Few have the problems of my friend Julius. His world seemed to end in June 2002, when, on a warm-up lap on the Nürburgring in Germany, he crashed his Honda Fireblade and woke up a month later unable to move or speak. He had broken his neck and suffered some core brain damage. Only 1 per cent of tetraplegics return to work. Julius is one, thanks to willpower, family, friends, Stoke Mandeville, carers, an empathetic employer and technology.

In his purpose-built house we discuss his daily life and the role of design within it. What he wants isn’t ‘pity, admiration or shallow concern’, but understanding of the difficulties he faces. ‘You’re separated from people in a physical way. Your persona gets so wrapped up in your disability that you get disconnected from life, even from your own body. Then, imagine, never to scratch an itch… hug a loved one or have a warm handshake with an old friend and always having to look up,’ he says. We discuss prototypes of wheelchairs with adjustable heights and a stair-climbing facility.

‘The disabled hate being treated as objects and defined by their limitations,’ says Julius. ‘I can be almost as good on a computer as a person with arms.’ What he can’t do is compensate if something goes wrong and he would rather suffer than ask.

In hospital he thought that movement was his top priority, but he was wrong. ‘Without communication you can’t do anything. I can’t point. I can’t gesture,’ he says. What he can do is use his thumb to drive the wheelchair, the back of his head to press a foam pad which works the remote control screen on the chair’s left arm so that he can operate doors, lights, heater, fan, phone, video and TV.

He can now speak, somewhat falteringly, with the aid of a microphone and amplifier. ‘But it only works when it’s on my face. Why can’t it be part of me? Will I ever be able to make a phone call that’s not broadcast to the rest of the house?’ He craves, above all, little bits of independence. ‘If only I could remove my glasses, clean them, pick up a mobile phone.’

Soon he will be able to answer and initiate calls using the mobile phone via the remote control device on the wheelchair. ‘What I want is proper communication. My mind works better when I have dialogue with people,’ he says. His preferred form of communication is e-mail. By moving his head he can activate a camera-mouse, which in turn moves a pointer on an on-screen keyboard.

Julius thinks a lot about form and function. ‘Being functional isn’t enough. The disabled appreciate style. And why not? Disability is so focused on misery that, if anything, design should more than compensate.’

Julius is luckier than most wheelchair users. His is stylish, slimline and versatile. ‘Most’, he says, ‘are chunky, dangerous to other people and unsightly.’ He is impatient with clever design. ‘It’s good when it forces us to rethink what we normally know, but it can lead to misuse if old behaviours persist.’ He wants things that are simple to use and to explain to others (a new carer, for example, possibly foreign) by means of pictures.

He has a cupholder and drinks through a flexible straw. Previous versions were complicated to use and unattractive. It took time for a helper to get the position optimal. Then he called on Remap (www.remap.org.uk), the charity that custom-makes ‘technical aids which help disabled people enjoy a better lifestyle’. It operates through a network of 1500 volunteers, professional engineers, technicians and craftspeople in conjunction with medical and paramedical staff from community services and hospitals. The company’s new design is one-piece, easy-to-use and even stable enough to allow mobility. Julius’s eight-year-old daughter ‘fitted it first time without any training’.

However, there is one problem remaining – hot drinks. He can’t sip. The straw delivers scalding liquid straight into a sensitive inner mouth. He either waits or gets someone to add cold water. ‘Is there,’ he asks, ‘a way of cooling the drink to your needs, of reducing the degree of cooling as the tea is drunk so that it will cool naturally and tolerance to heat increases, while at the same time not compromising on taste?’

Julius used to be my client. He still sets a mean brief. Solution anyone?

Please e-mail comments for publication in the Letters section to lyndark@centaur.co.uk

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