While we wait for the self-imposed media hype to accompany the current deep societal misunderstandings that allow for “Cybathlon” to happen – an unbearably useless and utter waste of money inasmuch as most of the presented prosthetic arms there are concerned, not just because these arms are expensive but technologically wrong for any real physical work, perpetuating history since the times of the Carnes arm – we can refresh our minds with the ideas and attitudes of down to earth and real, socially well integrated people. Like, me : )
As we all know – those of us that do work and work hard – social integration often means that the disability, the handicap, the hosed arm if you will, takes a step back. It means to wear a useful reliable prosthetic arm, one that does NOT attract too much attention, also not by permanent failures or repairs, and so a first step towards actual social integration means to learn to be able to tell shit from shinola.
In short, not all gadget hypes help an arm amputee to be alive and kicking. I wear hooks for the most part and I must say they helped me get ahead on things far more than any other type of prosthetic arm – practically, manually, of course, what were you thinking. And: not per se. As user of body powered arm technology, I inherited unsolved problems from the industry, academia and other R&D that must have slept on these for a few decades. And that – as we can see next week – will sleep on these for a bit longer. But after I – myself – gave these body powered problem areas a most serious make over, things started to work out *a lot* better. Growing up with my grandfather (who built factory lines as an engineer), father (mechanical engineering and robotics), uncle (high frequency electronics patent office engineer), aunt (semi conductor researcher who, as a female, won an IBM Europe Prize 1986) it was clear that only if you were pressed for time or out of ideas, tired, sick or incapacitated you would actually go to a shop and buy some device that others offered; and if then only after serious research into test reports and frequent complaints. Otherwise? There was nothing better than stuff that we did ourselves, both design and build wise (or at least to buy from people that built stuff with the same pride and ethics). That aside: prostheses are good only if they deliver a lot more than they cost, also in terms of attention, time, dedication, money and maintenance. The indication that they admit “technical supporters” for “cybathletes” for a whopping 500 CHF extra fee per supporter shows that the fear of the “prosthetic gadget thingy breaking down” is so tangible and real that participants are absolutely willing to forgo a few weeks of holidays (or whatever else they were doing with their 1000 or 2000 CHF in expenses for on-site tech support).
Real men go for far harder work alone, without prosthetic tech support. Until you have realized what all that encompasses, my guess is that 5 decades will pass. Easily. If not seven or ten.
There are others that work it out that way, too.
From http://www.sbs.com.au/news/thefeed/story/meet-hookie-dj-who-conquered-life
Tom Nash, aka Hookie is a Sydney based DJ, party promoter and music producer.
When he was 19 Hookie contracted a severe case of meningococcal septicaemia which put him in a coma and caused the amputation of both his arms and legs.
“Having a visible disability is very different to having an internal or emotional disability.” says Hookie. “It’s immediately identifiable and people will make assumptions about you.”
“Kids will often ask me if I’m a robot or a pirate and I tell them, yes.”
Meningococcal carries a very high mortality rate and Hookie was lucky to survive. However the illness turned his life upside down forcing him to rethink his career options.
Hookie turned to DJing and was rather good at it. He’s now one of the most sought after DJs around Sydney.
“DJing in front of a live group of people is more or less about ego,” says Hookie. “They’re all having a good time, you’re having a good time… no one should be getting paid to do this.”
“It’s a ridiculous job.”
From http://www.au.timeout.com/sydney/clubs/features/2024/tom-nash-hookie
Limbless at 19, he defied oblivion. Now this amazing man is inspiring the world… all while sound-tracking Sydney’s hottest parties
There’s no escaping the hooks on his hands or the gothic armoury of rigs, clasps, pulleys and pincers. But what disarms you the most is the light he emits. Tom Nash glows. It’s the aura of a man who stared down death and who now says “suffering is a gift”.
Tom talks of two lives. The first begins in South Africa where his oil exec father, Peter, and actress mother, Marilyn, gave birth to their boy. After two years there and six in Texas, Tom moved to Sydney with his Mum.
Living in Kogarah, schooling at Newington, Tom co-founded a computer business at 15 but what he lived for was music. He’d taught himself guitar, fingers sliding up the frets with ever-greater ease as he dreamed of big gigs singing the songs that fizzed in his head.
Tom was 19, living large, studying science-psychology at Sydney Uni and working as a glassie at the London in Balmain when it happened. “I woke feeling flu-ey,” he says, “and that night I was sick – vomiting,sweating, feverish. Next morning I couldn’t even get out of bed.”
Tom’s step-sister had received an SMS the night before: “Can you call me tomorrow to see if I’m alive?” Ha-ha, she thought. But when a cold, purple Tom crawled to the door next morning, she rushed him to hospital.
“I said to the ambo: ‘How long’s the trip?’ ‘Ten minutes,’ he said. I came out of a coma 18 days later.” By then Tom had suffered two heart attacks, his weight had tripled, and circulation to his extremeties was parlous. Diagnosis? Severe meningococcal septicemia. Odds of survival? One in 10.
A virulent bacteria, meningococcus attacks with horrifying speed and carries huge mortality – a fit adult can, it’s said, be well at breakfast and dead by dinner.
But Tom Nash hung on. And on. He woke up to “a horrible psychedelic melodrama – doctors, family feuds, pain.” Tom’s second life now began. “I hit rock bottom. I was a musician, a guitarist, I created with my hands. Legally, I could’ve chosen death. Instead, I just got on with it.”
First, Tom learned to walk again. Then, he got a flat and studied for a sound-engineering diploma while designing a guitar to be played with hooks, forming a band, Kulak, that would tour and cut an album. Offered a job booking gigs for Keith Urban, he opted to DJ Saturday night parties for Club 77 on William Street.
It’s here “Hookie” was born – “a gimmick tag but one that’s testament to how comfortable I am with my situation… and also how often kids ask me: ‘Are you a robot or a pirate?’”
Truth is, Tom Nash is a lot more. He’s now writing a book about his ‘lives’ (working title: Stumped) and in May flies to Brunei for a motivational speaking gig to a billionaire oil firm. In between, Hookie will continue to operate as one half of Starfuckers, “electro-aristocrat” DJs, uber-cool soundtrackers to hot Sydney nights.
A new album, a full DJ diary and a NIDA-graduate girlfriend of two years will keep Tom shining on. “After what I’ve been through, bad news is just fodder for relativity,” he grins. “Suffering is more a gift than a burden – it forces us to reach out for each other.”
People listen to music for very different reasons but one of the main ones is escapism. Music is one of those art forms that really has the ability to completely take you to another emotional state, really really quickly. DJ-ing in front of a lot of people is more or less about ego. You are standing in front of hundreds, maybe thousands of people playing music to them. They’re all having a good time, you are having a good time. No one should be getting paid to do this. It’s well it’s a ridiculous job. Thirteen years ago I had both arms amputated at the elbow, both legs about six inches below the knee. Kids will often ask me if I’m a robot or a pirate, and I tell them… “yes”. The first time someone put these on me I really did not like them they were so foreign, they were such an alien object but I started to get to like them a lot more just because, I don’t know, they were cool I guess. (laughs) I just like them now. Having a visible disability is very different from having an internal or emotional disability. It’s immediately identifiable and people will make assumptions about you. I once was waiting on the side of a road for my friend to bring the car around and some guy threw change at my feet (laughs) I picked it up (laughs) I was recently in New York City with a friend and we were having coffee some place and this middle aged woman ended up buying my coffee unbeknownst to me and I knew it was because she had thought I had been in the war, in Iraq or something like that. She was trying to do something good for, you know, for a vet and it was an internal conflict for me because I wondered whether I could go and tell that the assumption she was making about me was wrong. But then I kinda realized that all she really wanted from this kind gesture was for me to say, Thanks very much – and leave, which is what I ended up doing. But you know, on some level, it doe get to you a bit. Initially, you feel that it is your responsibility to manage people’s misconceptions. And then you just get sick of it. I probably had to answer like over 2000 different taxi drivers as to what’s happened to me which is getting to be a bit tiresome for me telling the story and so therefore I usually swing them a bullshit story like shark attack or I was an acrobat for a while, I’ve had an illustrious carreer. I didn’t have a problem with people being curious or asking me what it is, it’s a natural thing to do. But it’s also natural for me to get extremely bored by it. I’m sick of telling my story, I don’t care any more, if you care, you can google it. When I first lost my limbs I was unsure about what the future held, I didn’t have an idea in my head about what people in that situation did. The more I got do do things myself the more I understood what was possible and what I was capable of. Then you start thinking to yourself, you know I can probably pretty much do anything if I just try doing it heaps. Notwithstanding things there are some things I will never do, i.e, play piano, you know what I mean, you got to cut your losses. Not many people can play a piano anyway. I think that support groups are a fucking waste of time. From my perspective. I was asked to speak in front of a lot of amputees and it was one of the worst things that I have ever done in my whole life. It was like an endless procession of sad stories and it was just dealing with the emotional pain of having lost a limb. And there is room for that. But there needs to be more room for moving on. It was a lot more healthy for me to be around able bodied people who were just living normal lives because if you are around people who are getting on with their lives then you’re going to get on with your life. Nothing that I’ve done has been made any more amazing by the fact that I have hooks for hands. But it becomes less about what you’ve achieved and more about the fact that you’ve achieved it with a disability. And the enjoyment that the crowd gets from what you do and make people have a good time is extremely rewarding. A soon as you stand and have the DJ’s headphones on it’s just you and music. And there’s beauty in being alone in that situation. Being in the moment very subjective many people complain about fairly trivial things. There’s the whole cliché “live every day as though you were lost” but no one does that . I don’t even do that. That’s ridiculous. People would be sky diving and fucking in the streets. There would just be anarchy. Everybody is pretty much in whatever moment they’re in. It’s just making that moment something good. People say I would never have gone through what you have gone through. Which is complete rubbish because people deal with adversity their whole lives. It’s internal or it’s emotional – it never gets commented on and they just see someone in a physical disposition and say I couldn’t do that. Before this happened to me I probably thought that I couldn’t either but you never know what you’re truly capable of until you really test it.