Disclaimer: This post is not in partnership/sponsored by Motability. It is simply my journey that I hope inspires others towards greater independence.
It’s been a month since we left off in The Open Road, waiting for my official driving assessment to come around. It’s been a mixed bag of emotions as I struggled to interpret if the butterflies in my stomach were merely excitement or pure terror that this was actually going to happen. Me, behind the wheel of a beast of a vehicle (Mercedes Sprinter) when I’ve only ever traveled as a passenger my whole life, and mostly sideways in a black cab! There’s also the rollercoaster of self-doubt, was I kidding myself? Where’s the limit for this ambitious turtle? Most predominately, the immense pressure I put on myself that if I failed, our family would be destined to continue fighting tooth and nail to get between 5 different hospitals, school and nursery is completely different directions and extended family mostly taking the girls on day trips as public transport for all 4 of us, given our disabilities can simply get too much.
It’s now or never, but if I don’t try, I’ll always wonder if family life could have been made that bit easier.
Getting to Haydock
The assessment letter stated I needed to be at the North West Driving Assessment Service in Haydock, St Helens on the 9th Jan 2020. Earlier in the process, I was advised to look on this letter for instructions on booking transport to and from the centre with Motability. Those who know me know we struggle with transport in general as my powerchairs have always been too tall for traditional black cabs, giving me no option but to limbo under the roof tilted back. With the date only 4 days away from the receipt of the letter, my first instinct was to ring my local wheelchair-accessible transport company, Nationwide in Bolton who I have a brilliant relationship with and who’s accessible vehicle has a tailgate lift that I properly get anchored down into, to book them, then call Motability to see what happens with financial support for the taxi, figuring it’d be a straightforward reimbursement arrangement, which we are incredibly grateful for!
I was impressed to learn from the lovely lady on the phone from Motability that they have company called Brunnel, based in London that various accessible taxi firms up and down the country are registered with. All said firms are safety checked and are ensured to have specific training on transporting Motability customers with all sorts of mobility aids, including types of powerchairs. So, she instructed me to cancel my booking with the taxi firm I regularly use (as they weren’t a registered firm with them) and she’d book me in with a suitable vehicle for my assessment to which Motability pay directly.
At 10am on the dot of assessment day, we saw what looked like a standard black cab pull up at the front. My anxiety naturally peaked at this due to numerous bad experiences. However, I gave it a go regardless as I didn’t want to be late or at worse have to rearrange over transport accessibility. The driver had an extension ramp and promptly got it from the boot to make the ramp less steep for me, without being asked! To my relief, I did not decapitate myself rolling up inside, as I usually do, and once in realised that the roof of this particular black cab was in fact higher! Woohoo!! Then the icing on the cake was the driver tying down my powerchair securely and putting an extender belt around it for extra reassurance. Motability could so teach the taxi world a thing or two, absolutely brilliant!
We arrived bang on 11 and only waited briefly in the waiting area before we met up with my assessor Kevin, the same lovely fella who came out to the house in my last blog. After checking over my provisional driving license and a few questions, hubby and I were led to the Sprinter I was going to take for a spin at the nearby racetrack! No, not actually doing laps around an F1 track, it was merely a massive bit of tarmac used for parking/assessments. It was only 5 minutes up the road from the assessment centre so Kevin expertly locked my wheelchair down in the back as a passenger, hubby sat upfront while he whizzed us up the road.
It was a particularly cold, windy day and I was glad we made the decision to wrap up warmly as Kevin had to do a bit of construction work in the vehicle e.g manually moving the drivers seat to a back passenger position and erecting steel poles to place the Space Drive controls on that he’d determined in the home assessment may work best for me. To do all this we needed to get out the vehicle as we talked excitedly while he did what he needed.
Behind the Wheel
My stomach did a flip as Kevin finished up and I came back up the lift into the vehicle, being instructed where to precisely park my powerchair at the driver position. That feeling quickly shifted to empowerment, I felt so high up and able to see more of what was in front of me than I’ve ever really experienced having always been a wheelchair passenger mostly in the back, unable to hear anything and being cooked alive by the heater… Being upfront and in control is a whole other experience!
After securing me down with manual tie-downs and fiddling with the “scaffolding” around me that held the Space Drive controls in place to make sure they were the optimal positions. I was ready for my first crash course (not literally thankfully…) in how to operate these specialist driving controls.
The assessor explained that the van was completely operated by a joystick in my left and right hands. On the left was steering and the right was break and the accelerator. He held a bleeper that controlled indicators and reassured me that he had an emergency foot break so if at any point I got into danger, he’d break us to safety. Phew! Then came the first hurdle, mirrors!
Eye Movement Disorder
My form of Muscular Dystrophy has a symptom called Opthlamoplegia, which means paralysis of the extraocular muscles. I can see well with my glasses, which correct general short-sightedness, but the Opthlamoplegia means I can’t look up or side to side well, my gaze is mostly fixed straight ahead of me. To compensate I turn my head as much as possible, which there are limits to this also with my Spinal Fusion surgery, or I’d just move my powerchair in the direction I want to see. Obviously being tied-down, I couldn’t use my powerchair to compensate and the Sprinter being a MIGHTY beast I was unable to turn my head completely sideways to see the left-wing mirror. Kevin assured me that he’d just note down I needed an extra mirror on the dash to overcome this limitation. Brilliant. To be honest, I thought I’d fail my medical for my provisional right at the beginning of this driving journey purely for this part of my disability, so it was a HUGE surprise to learn of all the adaptations that are available, including having cameras on the dash! Though Kevin didn’t recommend these if we could get away with it due to frequent breakdowns… For this test drive, Kevin was manning the left-wing mirror.
Now or Never!
With instructions and words of encouragement, it was time!
I was off to a rocky start the first few minutes as I struggled to grasp breaking was forward and accelerator was back, my brain kept thinking it was the opposite. 30 seconds in and the seat belts came in handy when I accidentally breaked H-A-R-D, which was embarrassing as the assessor and hubby were nearly suffered whiplash! I apologised profusely and was reassured by Kevin that it’s to be expected, I’m used to driving a powerchair, not a massive van! We carried on and I did my absolute best to follow his instruction to the letter, keeping my motivation at the forefront of my mind when I made mistakes, I wasn’t going to give up! Some instructions I’d do the wrong way around when I’d panic over jolting everyone or how rocky the van was as I tried to keep it steady over the hardest pot-holed filled terrain e-v-e-r. Kevin was amazing and taught me some breathing exercises to keep me calm when I panicked.
20 minutes in and I’d mastered sticking to the left side of the road and going in a straight line at a steady speed. Half-an-hour in I recognised going over pot-holes that I needed to slow it to a crawl as the uneven terrain jiggled me around a lot, making me wobble the joystick as well so that’d be how I’d get around issues with hand instability. We took a few breaks, where we went into park and talked through what was working for me and what needed exploring a bit more.
Kevin noted when I hit uneven ground my right hand was at times thrown off the joystick all together and went to dig in the cupboard in the van. He brought out this upside tripod bracing gadget that sort of holds your hand in place and told me it was designed for tetraplegics with minimal grip ability but could also be beneficial in my case. He also noted on his assessment I needed a chest harness/strap for greater upper body stability and explained my van would have an emergency button that would alert the RAC if I was in trouble, broke down somewhere and/ injured. All my medical information, the fact I’d likely be trapped in the vehicle in the event of an accident as I was driving from my wheelchair anchored to the vehicle floor and details of the Sprinters specific adaptations would come up on the RAC system so whoever was sent out to us would know everything they needed to. This feature alone was mindblowing and incredibly reassuring as somebody driving with such complex needs.
How did I do?
The assessment ended about 2 hours in with me steadily pulling the Sprinter to the side of the road. Kevin asked me how I felt after everything. With complete honesty, I confessed I was concerned about the breaking error I made in the very beginning but the fight in me told me with time, patience and a lot of practice I could get the hang of this. He was amazing and told me that I’d done extremely well considering I was being thrown around a lot on bumps, couldn’t use the left-wing mirror on the demo vehicle and the fact we couldn’t fit the tripod hand support to my right joystick control on the space drive. I’d controlled the vehicle well despite those issues, listened and followed instructions well and once my confidence grew my driving is very fluid. Kevin’s next sentence would be the most life-changing since learning I was going to be a Mum…
“So if you still want to go for it after experiencing driving for real, let’s get back to the centre, fill out some paperwork and I’ll let the grants team know ASAP that I’m approving your capability to drive!”
I was stunned. Part of me had thought the breaking issue alone was grounds to fail me and I was ready to walk away from today with the appreciation of getting behind the wheel for the first and final time, getting to try at all was meaningful enough. To be able to say, yes I’ve driven, even if it was just the once. I wanted to jump up and hug this guy who had just granted our family a ticket to freedom, but obviously, that wasn’t possible so I just kept thanking him.
What happens next?
Now with the stamp of approval, there’s a 4-6 week wait before we’ll hear anything. The grant from Motability had already been pre-approved and just needed the assessors go-ahead, so once that’s processing the build of the drive-from WAV begins. I was asked where I’d prefer to go to have the space drive controls and all driving adaptations fitted out of 3 choices. A newer place in Accrington, someplace beginning with a T I’d never heard of and a really highly regarded specialist centre in Coventry. As I have friends who’ve gone through this journey already with similar controls etc who told me how amazing the place in Coventry was who dealt with their van build, I decided, despite the distance, we’d go there because I’d rather travel further and get it done right than go with a newer, less experienced place where we may encounter re-currant issues.
I hope this post has proven an informative resource for others who may be unsure if driving with a progressive, Neuromuscular condition is possible and just how Motability can make dreams a reality!