I recently tweeted about how frustrating life can be as a disabled person but how incredibly grateful I am for having such supportive family and friends. Life as a someone who is reliant upon an electric wheelchair can be very frustrating, particularly when things go wrong.

Almost three weeks ago, I had planned an afternoon out at the park with my little lad and his cousins.  It’s rare that they see each other and I was looking forward to time with my nephews and niece.  But on the way to the park, my wheelchair started cutting out suddenly. I’d turn on the power button again, only for it to cut out again after a few hundred yards. With four children in my care, I didn’t feel safe or in control. Luckily, we were meeting friends at the park but I also rang hubby to walk us back.  The chair progressively got worst and eventually, it wouldn’t move more than a metre without failing.  Hubby resorted to pushing me home and the happy, relaxing day I’d planned ended in frustration.

The wheelchair had only been purchased late in 2017, as I’d decided to leave the Motability Scheme, ironically due to slow and extremely poor customer service.  Unluckily still, the company I’d purchased it from had gone out of business a month after my purchase, meaning I had no support in such instances.  So I found a company, Northwick Associates, who unlike so many companies, were able to come out to me that day.  They seemed to understand the urgency of my predicament.  Unfortunately, the engineer who visited was unable to pinpoint the problem despite his 2 hour visit. Nevertheless, he promised that another engineer would be sent as soon as possible.

Two days later, another engineer arrived who seemed to empathise with me and understand that my electric wheelchair is the absolute key to my independence.  He’d spent time the night before his visit studying the wheelchair manuals to try and find the problem.  With some wriggles and jiggles, it seemed he had cleared the error and just to be sure, I did a short test drive and the chair was back to normal.  I was over the moon to have my independence back – it’s hard for me to convey the relief knowing my life is back to normal. Some may think I’m exaggerating but imagine someone taking your car keys or your wallet – how would that impact upon your life?

But my joy was short-lived as the next evening, Friday, the chair began cutting out again as I went to visit my parents. I rang Northwick again only to be told that unfortunately no engineers were available until Monday – at the earliest.  Imagine your car breaking down and phoning the AA or RAC, only to be told you’d have to wait two days for any assistance?!

I should explain that due to previous issues with my wheelchair, we did purchase a very basic back-up replacement in January just to ensure that I’d never be totally housebound. I soon realised though that it was literally to allow me to do the essentials locally – it is very basic and has very little umph!  Try going from driving a brand new Mercedes to a Fiesta and you’ll be on my wavelength.

Monday morning arrives and I’m on the phone again to Northwick but as timing has it, the engineers are on training and unavailable to visit until Wednesday – when not one but two engineers arrive.  Surely between them, I thought, they would identify the problem?  Unfortunately – I’m using that word a lot – they concluded that they would have to take the chair away to strip it down.

I was truly exasperated at this point – if only I’d known how far I was from a conclusion!  Three days later the engineer texted to say the fault had been found, repaired and the chair was ready. Hubby and I decided to collect it ourselves as to save some time.  Once again, the relief of getting my Mercedes back was immense!  But hubby aired caution when I mulled over a solo trip to town.

Wisely so. The next day, as I returned from the local shops, the chair started behaving weirdly – but not quite as before. I hoped it was me imagining the worst until the next day. I was doing the school run and got as far as the school grounds when the chair cut out totally, just as before. My little boy’s teacher approached to see if she could help and I had to try so hard not to disgrace myself in front of her but instead I fought to hold back tears as I tried to explain.

Having managed to get safely home thanks to hubby and a friend, I knew I needed to compose myself before once again phoning Northwick. I should stress I didn’t blame them as they had been more responsive than anyone I’d dealt with in the past, but I was to put it mildly, very frustrated at this point.

Northwick admitted they were now at a lost and offered to contact the manufacturer, Invacare, on my behalf as the chair was still under warranty. Another few days are lost until they send out an engineer.

YET AGAIN, I’m told the chair will be taken away for a thorough investigation. My only consolation is that I’m informed now that the warranty should cover it.  I’m sort of pleased to say the fault has finally being identified, but wait for it. Here comes the icing on the cake.  The replacement part I need isn’t stocked in the UK and has to be ordered from GERMANY. Yes and it was only ordered yesterday. And, oh yes, they are unable or more likely, unwilling to give an expected time of arrival.

Three and a half weeks without my wheels, my independence, my ability to travel and take my little boy to school safely – and that’s all I get.

I saw a tweet quite recently that essentially implied that disabled people should be grateful and satisfied with the progress this country has made in the last two decades to improve disability equality.

I’d have to respectfully disagree.