Second in a series. Read part one.
I’m actually driving!
I really can’t remember the last time I had done so.
The car I’d had for years from Motability, a car and scooter program in the U.K. to help the disabled enjoy worry-free motoring (it really works, folks), had all the necessary hand controls. But I was now too exhausted from clambering into it to consider driving. Still, I’d lived for months in my favorite track, Iggy Pop’s “The Passenger.”
I’m in a new VW van with a fitted tailgate. It lifts me and my equally new electric wheelchair up to the back. I then roll in, hit a remote, and the lift folds. Then the tailgate closes. Industrial magic.
The driver’s seat has been modified to roll just over a meter (a little more than a yard) back and then can be turned. So, in my present state, I can transfer. Hey, presto! I’m driving.
The downside: I took the family out for a pub lunch and I was the one driving back. For a while, at least my “Well, I Can Drink in the Pub” card can no longer be played.
You might well ask why I didn’t do this earlier, and luckily, for somebody writing a column, it’s a somewhat complex tale. I obviously don’t have the literary skills of Joseph Heller or Franz Kafka, but I was thrown into their world of “Catch-22” and had all the power of a bug dealing with a bureaucratic nightmare.
A Motability lease lasts for three years — I presume most of us don’t do excessive mileage or thrash our vehicles, so the on-sale value must be good. Also, many of us are dealing with changing symptoms, and what was once suitable no longer is.
This is exactly what happened in February 2018, when walking even a few steps became problematic. A different vehicle was needed. But I’d entered the disability netherworld designed in the last few years by the government. This is extremely complex for the disabled to grasp in the U.K. — how I can convey it to anyone abroad without putting them to sleep may be beyond me!
Here goes … the highlights.
We’re all being moved from Disability Living Allowance (DLA) to Personal Independence Payments (PIP). On the surface, so what? According to the MS Society, by last year, 9,400 of us had lost our Motability cars. You don’t qualify for a Motability vehicle without getting PIP.
So that’s one Catch-22. The other was I was still had DLA, so a moratorium slammed down on me. My three-year lease turned into nearly five! It made no difference that I’d been given as an MS patient a lifetime DLA assessment.
Motability changed its rules, and I was suddenly allowed to apply in the month my award was updated annually. That was February of last year, when I also relapsed — so though on the floor (and at this time not always just a figure of speech), I had to power through.
I’d already had the car a year longer than I should have because of this change.
The whole thing was further delayed by VW being unable to manufacture the van on time, ruining the cliché of German efficiency. After the company’s debacle with diesel testing, I also honorably tried to get a gasoline engine — which I ordered despite it costing far more. They withdrew the engine, and I was in no position to do anything about it. So, the van is diesel, R33 BlueDiesel, to be specific, and it has a separate additive cleaner. The fuel was once rumored to have contained pig urine, so in theory, my now-vegan son could have objected to riding with us. Thankfully, he seems to be cool about it.
And the kicker?
The day after the van was delivered, my PIP application arrived.
Forty pages of pure joy.
Now I have to prove it.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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