A second class life?

In September 2008 a young man of 23 from the UK took his own life at an assisted dying clinic in Switzerland. He had been paralysed from the chest down in a rugby accident and reportedly feared a second class life.

In another time and place a similar man did things differently.

In March 1973 a young man of 17 from the UK contemplated his future whilst being rehabilitated at a spinal injuries clinic in Switzerland. He had been paralysed from the chest down in a skiing accident. He didn’t really know what to expect of the rest of his life.

He had been downhill skiing near the family home in Klosters, showing off for his sisters and girlfriend and he had fallen. Fast, hard and on his head.  Right from the start his parents and he were told that the nature of the injury meant that he could expect to last about another five years before being fatally overtaken by infection and general debility. This was wrong, as it turned out.  

He spent a couple of years in rehab in Switzerland and then went back to his old school in the UK  and sat A levels, getting into Oxford to read psychology. Then he did half a doctorate and a complete master’s, failing uncompromisingly to deteriorate as previously predicted. 

He has tetraplegia. Tetras have varying degrees of upper body paralysis or weakness, as well as no leg function. He can move his arms but as a result of his injury he has lost his grip – a literal rather than metaphorical truth. He breathes with his diaphragm and not his useless rib muscles. He shifts about in his wheelchair all the time which doesn’t look paralysed and he even fidgets.  He can’t hold a knife to cut but he can use a fork to scoop. He can drink a pint from a glass with a handle by hooking it over his thumb and balancing it but he can’t grip any kind of glass or cup with one hand. He aspires to paraplegia, where people are disabled from the waist down and are more independent – think Tanni Grey Thompson or Frank Gardner. Paras can usually ‘transfer’ to and from a wheelchair unassisted. In and out of bed, in and out of a normal family car. On and off toilets. He can’t.

Even though his hands and legs don’t work he drives his own car. Alone. Don’t think too hard about that, just admire the engineering feat of a van with a wheelchair  ramp. He locks his chair behind the wheel and shoots off. He has no points on his licence for driving, but he was once cautioned by the police for reckless wheelchair use.

He has never yet contemplated suicide though he gets hacked off at times. His masters dissertation on spinal cord injuries showed that not co-operating entirely with rehab was good for you. Getting hacked off is a coping strategy, not a failure to cope. He goes out on his own, speak four European languages fluently and annoys and provokes internationally.

He’s dashed from job to job and place to place. He’s produced and directed short films for BBC TV and  Channel 4  and has been an arts administrator, fundraiser and press officer.

But his ability to run his own working life depends entirely on other people. He can’t roll out of bed and onto the Tube in his own time. The fastest, complete, getting up routine takes an hour and a half including, as it must, daily physiotherapy. That’s without a wash, shave and breakfast. And his Personal Assistant (PA) always has to be up first otherwise he’s going nowhere. A PA off sick or late means he  has to stay in bed until someone can come and get him out.

PAs come and go. The religiously driven are religiously avoided. The motivation to work with the helpless and infirm is common and wearing and has to be weeded out every time he advertise for new PAs. He has no desire to be anyone’s special project en route to righteousness. ‘Just bugger off’ just about covers his response to those types.

His PAs have to ‘live in’ so there is an element of ‘Mi casa es su casa’ though, if he could choose, ‘mi casa’ would be just that. Few people spend their entire lives living intimately with people they barely know or with whom they have less in common as they age. For him that is his domestic reality. Unsurprisingly, it doesn’t work all the time.

The downsides of his life are an heightened valuation of privacy. He can’t get his own coffee, cook or crap without company. He can’t pee without extra tubes and drains. He can’t get his own money out of cash machines. He is cursed with a taste for order and neatness but it can only be achieved by asking other people to do things the way he’d like. Imagine how you’d feel having to explain the detail of your normal household routine. It’ll make sense to you because it’s what you do. If it’s nonsensical no one will know, or care, as you never have to explain your idiosyncrasies to anyone else or expose your routine to external appraisal or questioning. He does.

He is classed as a vulnerable person but he just can’t internalise the ‘vulnerable’ tag. He’d prefer to be labelled hectic, complicated, lively, active, attractive or demanding. He gets out to gigs and flies regularly. He’s lived and worked in the US several times, sometimes with a girlfriend, sometimes not. Europe is easy to get to by car and he often goes. He even considered settling in Costa Rica with a (now ex) girl friend but it was too hot and his thermal regulation is poor due to the effects of his high spinal injury.  He’s been engaged couple of times but, unfortunately, has bailed.

So far, so normal. 

But he’s getting older. Forty odd years of wheelchair use and disability activism and he’s still not confident that judgements about his quality of life and how he wishes to be treated, or not, when he gets ill, will be made by him. Recent events show there is at least one set of doctors who agree with the view that tetraplegia is self-evidently a second class life.

The lack of outcry against and empathy for the deeply personal tragedy for that young man and his family was very mature of the Public.  On the other hand the lack of outcry against the implications of an assisted suicide in a young man with a life ahead of him suggests considerable misunderstanding by able bodied people of the lives of disabled people.

That scares the 54 year old veteren wheelchair user, unlike most things up until now.