A Fox Lake Blog

Clear the Roads!

Many years before I was injured a colleague once described the experience of being driven by me to a meeting in Cheltenham as, and I quote, “both the most frightening and the most erotic experience of my life”.  In my defence we WERE running late and it was an important meeting but still God knows what the poor man would make of being driven by me in a car with hand controls whilst paralysed from the shoulders down.  Especially if said man had been in the car with me the day my foot got stuck under a badly designed pedal guard, jammed onto the accelerator and hurtled the car rapidly over 90mph.  Luckily I was on the M18 at the time and it is one of the motorways that still has a hard shoulder so I was able to get across the lanes and then lean on my brake hard enough to slow the car right down despite my foot still pressing the accelerator – but not enough to actually stop.  Then I had a problem.  One hand is on the lever that controls both brake and accelerator and, in this instance, braking as hard as possible.  The other hand is holding the steering wheel to hold the car in lane on the hard shoulder and now I have run out of hands to do anything else with and the car is still moving.  What I needed was a, well, handy third hand to knock the damn thing out of gear.  As I lurched along the edge of the motorway I considered my limited options. 

Option a) let go of the brake lever and reach over with right hand to gear lever and put it into neutral. This would see me accelerate like a nutter briefly on the side of the motorway but at least I would be able to hold myself in lane.

Option b) let go of the steering wheel with my left hand and hope that I can knock the car out of gear before I veer into the adjoining slow lane and possibly the path of an oncoming lorry. 

Then I remembered one of the ‘safety’ features of my car is that you can’t do anything with the automatic gear lever unless you are pushing the brake pedal.  So option b) it was unless I wanted to do my whole journey home lurching down the M18 until either the Traffic Police came to enquire exactly what the hell it was I thought I was doing – and probably arrest me for failing to stop when required – or the brakes overheated and faded and I ended up being chased down the hard shoulder at speeds of over 100mph by aforementioned constabulary before wrapping myself around a bush/tree/the armco and finishing the job my horse started.  

I let go of the steering wheel and grabbed the gear lever into neutral, did not veer much off lane before I could grab the wheel again and came to a stop.  Frightening, yes.  Erotic?  Definitely not.

Generally though, being able to drive is a delight for me, if not for my passengers although I have been mightily impressed by the sangfroid of many of my friends who have clambered willingly into the passenger seat and only whimpered quietly occasionally.  I have read several times that other disabled people love driving because they feel ‘normal’ – that when they are in their car no-one can tell that they are disabled but sometimes I feel bad for fellow road users around me when I display some annoying driving due to my disability.  Modern cars have lots of buttons – radio, satnav, thermostat, vents, aircon – all designed to be operated by hand because most people are driving with their feet. When you are on hand controls – as my M18 experience demonstrates above – doing anything other than simply driving becomes a loaded choice and usually means that you have to wait until coming to a stop at a traffic light or junction to have a hand free to twiddle other knobs as required.  This also means that the person behind you is wondering why the hell you haven’t moved off yet and it takes some serious set-up planning if you are driving somewhere on your own which is going to take several hours.  You really don’t want to have to go through the rigmarole of pulling off the motorway into the services with all that entails just to forward onto the next song on your playlist or take the temperature down two degrees.  

The other thing you have to master is car transfers.  As I said back in the Barbara Bus days – the fact that wheelchairs and cars are not compatible sizewise has probably never crossed your mind. It is possible to get vans that allow you to wheel directly in and drive from your wheelchair but I have always been a bit of a petrolhead and faced with an impressive array of available machinery thanks to the Motability scheme, I would rather have eaten my own arm than settle for a large box on wheels; eminently more practical and sensible as the box may have been and as I have been CONSTANTLY reminded by Himself as he wrestles with my latest, tiny hot hatch. Sample conversation:  “Do the seats lay flat in this to slide a wheelchair in?” Me: “No – but look!  I can change the colour of the lights on the dashboard!!”  

A quick aside on the Motability scheme.  There are vanishingly few advantages to having a spinal cord injury but gaining the benefits of Motability is one of them.  Motability is a charity partially supported by the Government but mainly financed by ordinary donations, that supplies the severely immobile with transport.  It used to supply the less immobile with transport too but flagrant abuse of the system inevitably led to the rules being tightened.  I have heard tales from car salesmen about young men coming in insisting that their disabled granny really did want a M3 series BMW in that particular metallic purple and with extra low profile tyres.  Bingo waits for nobody, it would appear.

Sadly abuse of the system by this type of greedy and selfish prat has meant that definitions have had to tighten.  As a result many genuinely disabled people have lost their transport and over the last few years what was an astonishingly extensive list of available makes and models has shrunk and continues to diminish.  However, even given these issues, it’s still a wonderful scheme, if you qualify.  Essentially the charity supplies you with a brand new car, adapted for your disability, in return for a deposit (variable on the cost of the car you choose but can be as low as £500).  You keep the car for three years and everything is paid for on it – servicing, tyres, insurance, car tax, recovery – in return for a monthly proportion of your Personal Independence Payment (PIP) as the lease cost.  All you have to pay for is the fuel.  The independence and freedom conferred by being able to drive cannot be overstated.  For someone like myself, living in the middle of nowhere with only a dirt track in the village not passable by ordinary wheelchair and with no public transport, not having a car would mean I would literally be imprisoned in my own house.  As we come out of the experience of lockdown, many of you reading this now know what that feels like and I’m sure you can imagine what it might be like to contemplate that lack of freedom for years and years on end. 

So, back to car transfers.  As a quadriplegic I am not strong or stable enough in the arms or torso to swing myself from chair into car seat so I had to learn to slide across a transfer or banana board.  (Another genuine sample conversation:  Me “Can you pass me the banana board?”  Friend:  “Why is it called a banana board?”  Me *contemplating yellow, banana-shaped board* “I have no idea”.)

The board bridges the gap between wheelchair and car seat and it’s actually one of the easiest transfers to learn to do because, whether getting into driver or passenger seat, you have a door in front of you to lean on that, theoretically stops you falling forward onto your face.  I say ‘theoretically’ because I have in fact achieved exactly this twice – the first time when leaving hospital to do a home visit with the hospital OTs to see what adaptions I required.  On that occasion I was scraped off the ground by the driver and the Head OT and I agreed to a collective amnesia about the fall to avoid a vast amount of paperwork.  The second time the wheelchair moved sideways due to a dodgy brake and the board fell off the seat, depositing me into the very small space between wheelchair and car door.  Luckily – and these are the sort of things you ALWAYS have to think about when as incapable as I am – I had already placed my phone into the door pocket so I could reach it from the ground and request help to unptretzel myself from the floor.  Obviously, falls like this don’t really hurt because you can’t feel properly but they are dangerous as limbs can easily get twisted and break brittle bones and restricted blood flow means that skin scrapes and cuts are extremely slow and difficult to heal.  So ideally, you try to avoid them.

My first car transfer at home was not what one could call smooth.  I was still physically pretty weak, even a year after my accident and the situation was not helped by me choosing a Mini Cooper with wraparound seats as my first vehicle – but – as noted earlier it made lovely engine noises and you could change the interior light colours.  Himself came to help.  I placed board between chair and car.  So far, so good.  I started to push myself out of chair to halfway across board and then didn’t know where to put my hands.  I tried grabbing hold of the steering wheel, lost my balance, hit the windscreen lever instead and turned the wipers on.  Himself leant in to help as I lurched and hit the lever again, squirting him with screenwash.  At this I got the giggles and collapsed backwards into the car. On another occasion I managed to fall forward and split my lip open on the gear stick.  Graceful it was not.

Once actually IN the car I had to relearn to drive which was harder than I had anticipated. Fellow Yorkshire road users were subjected to crawling along behind me at 15mph in narrow lanes as I tried to become accustomed to steering one handed and not muddling ‘down’ with ‘forward’ on the other hand. Adjusting to momentum and changes of direction is also tricky without any torso muscles although, from the way Himself frequently grabbed the dashboard on corners, it seemed that he was suffering from the same problem.  As the tweet that introduced this chapter indicates, to start with I did occasionally require co-driver action from my passengers and sometimes tricky decisions have to be made at junctions and at night.  The switch for the indicators and headlight dip is on the accelerator/brake lever but this was being operated by my right hand which only has about 20% function, if that.  So I did not have – and still don’t have – the finger dexterity to flick switches whilst also pushing the lever forward to brake.  Cruising into a junction therefore requires careful timing to ensure that you leave yourself able to brake, then indicate, then brake again otherwise you confuse everybody by indicating way earlier than ‘normal’ or not at all.  Also, on bends at night you can EITHER brake before the bend OR dip your headlights but you cannot do both should an oncoming car suddenly appear.  Somewhat selfishly I generally opt for making it around the bend in one piece.

After a few weeks of shuffling around the lanes, I got to the point where I could feel relatively confident that in an emergency situation I could rely on my reflexes to push a lever to stop rather than expect my paralysed right foot to do anything and I ventured out onto faster A roads and from there dual carriageways and, finally, the motorway.  Then I went to the nth degree and embarked upon a three month course of specialist neuro therapy in…Cambridge. Unfortunately at the time there was virtually no specialist exercise rehab in the North so this meant I had to drive from Yorkshire to Cambridge twice a week – a total of 800 miles.  Many lovely people volunteered to come with me to share driving and their company during this time but there were still weeks when no-one could make it and I had to do the trip on my own. I mention this because 18 months after I started driving post injury and the nearly 10,000 miles I had clocked up just going to therapy for three months, someone casually happened to ask me where I had taken my hand controlled car driving test.  

“Er…my what?” I responded, a feeling of cold dread creeping up my (paralysed) spine. “Your hand controlled car driving test” the person patiently repeated.  “Which test centre did you do yours in?”  So it was that I discovered that I had to take a separate test – which makes perfect sense of course but nowhere in any of the Motability literature had it mentioned this necessity and, once again, as with pretty much everything post hospital, I was having to work it out on my own so I had managed to miss this requirement.  I belatedly consulted the DVLA which told me “Get thee to a driving centre like now” so I booked myself into my nearest one at Leeds.  To keep up the appearance that I had NOT already been driving all over the country alone, Dad drove me to the centre and I wheeled myself in to see the lovely people there.  

My assessment started with a long questionnaire over a cup of tea with one of the instructors.  Questions were asked and answered about injury, ability, function, driving experience, type of hand controls and then we got to the critical one.  “How long have you been driving your car post injury?” the nice instructor asked, presumably expecting an answer of “Oooh, about a month/six weeks”.  I took a deep breath.  “Um, 18 months.” I answered.  The nice instructor’s pen froze momentarily over the paper then, displaying the nerves of steel and general unflappability no doubt requisite in people who get paid to sit alongside newly disabled drivers on public roads, he calmly replied “I see” and wrote down my answer.  I waited for the reprimand or even to be told that my (unqualified) licence was about to be revoked but to my immense relief he merely said “Right, well, let’s get you in a car then”.  Which sounds easy but wasn’t.

First, the car was not the same as my car – which I’m sure comes as no surprise to anyone but when getting in your car relies upon being used to a certain width, height, door and seat placement and you are still very weak and useless from the chest down, even a small differential of a few inches can make the difference between being able to slide into the car and being stranded halfway with your face resting on the door frame and your backside hanging off the slide board.  So it was with me.  Luckily disabled driving assessments involve two instructors – presumably so they can at least hold someone sympathetic’s hand as they face certain death – so between the two of them I was unceremoniously shoved into the vehicle.  Then I faced a second problem.  The hand controls on this test vehicle were not the same as mine.  First, they were the other way round – lever on the left and steering with the right hand. Second the lever was pull forward to accelerate and push to brake.  Suddenly I was now having to hold my wheel with the hand that has virtually no grip and rely on a different technique to start and stop which is not conducive to accurate reactions should something unexpected happen – and this was Leeds. For those of you who have never tried driving in Leeds I would advise you just don’t.  A work colleague of mine, knowing I came from Yorkshire, once rang me in the office in London sobbing because she was mired in the circle of hell that is the centre’s one way system and couldn’t get out of it to find her meeting. She hoped that, as a relative native, I might be able to help.  I listened sympathetically and then told her it had been lovely working with her and did she wish to leave any money to a cat charity?

Doubtfully I regarded my ‘new’ controls and mentally kissed goodbye to passing any form of driving competence test.  “Right” said my lovely instructor, from beside me.  “Off you go then and I will give directions as we proceed”.  I started the engine and lurched erratically out of the carpark and onto the road.  To be honest, I don’t remember much about the next half an hour but it would be fair to say that I did not cover myself with glory.  Luckily I did not cover myself with pedestrians either but smooth progress was most definitely not made.  At one point I definitely lost hold of my grip on the steering wheel whilst negotiating a roundabout but since I was doing 3mph at the time this wasn’t as much of a problem as one might anticipate.  To demonstrate that I did actually know what I was *supposed* to be doing even if the combination of disability and new controls was rendering it unachievable, I accompanied my motorised perambulation with a running commentary such as “Right, traffic light changing to red need to brake…need to brake…brakes…bollocks, OTHER hand, yes, there we go.  OK, changed to green, um, why am I not moving?  Oh yes, pull BACK to accelerate in this car, haha – different controls you know…WHOA, mind that cyclist..shit, was that a junction?” and so forth. 

I arrived back at the test centre (the turning for which I nearly missed and barely made, entering with an unexpected turn of speed and then screeching to a halt) very depressed and contemplating the loss of my newly found freedom and weeks of tuition in this test car before I would be assessed again.  “Well done,” said my lovely instructor.  “You’re all set”.  I stared at him, astounded.  “You can’t possibly be going to pass me on that showing are you?” 

“Oh yes” he replied cheerfully “I thought you actually did rather well”.  If he was telling the truth all I can advise you dear reader is that there are now even more reasons to stay the hell out of Leeds traffic. 

I clambered back into my Mini immensely cheered and hoped the lovely instructor was watching to validate his pass as I pulled smoothly away from the test centre in my own car to get hopelessly lost once more in the rabbit warren of suburbs.  My freedom was now official and the world was my oyster – or at least those bits of it I could reach by car and if there was someone waiting here to help me get out on arrival.  

#Mini still requires a co-driver. Responsibilities: Me: brakes, accelerator, steering. Him: headlights, gears, screaming.

3 replies on “Clear the Roads!”

Love love love this! Was thinking just the other day I’d not seen any of your blogs – which are brilliant 🥰

Another great chapter! The Mini is worlds away from the Barbara bus & you are in control!!

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