Lifts/Elevators | Wheelchair Life

Image Description: A wheelchair-user is seen facing a lift/elevator full of able-bodied people. Caption reads, "to you it's the easy way. To him, it's the only way".
Image Description: A wheelchair-user is seen facing a lift/elevator full of able-bodied people. Caption reads, “to you it’s the easy way. To him, it’s the only way”.

As a non-ambulatory wheelchair-user for the past two decades, I’ve experienced many frustrating encounters with lifts/elevators.

~ Being unable to fit inside because they’re occupied by physically fit (lazy, ignorant) able-bodied people

~ Getting stuck in them (once on a very old ferry!)

~ Getting stuck out of them (broken/out of service)

~ Waiting, waiting, waiting…

Image Description: Closed lift/elevator doors with a sign above displaying the words, "lift not in service"
Image Description: Closed lift/elevator doors with a sign above displaying the words, “lift not in service”

As a teenager, I went shopping to my local TJ Hughes store (super cool!), which was on three floors. It was a crappy old lift but nevertheless I travelled to the top floor because, well, I wanted to!

When I came to use the lift again, it wouldn’t work – it was completely unresponsive.

Unable to walk at all, I was stranded on the third floor in my manual wheelchair.

More than a little irritated, I started hammering the call button on this lift, “you WILL bloody work!!”
It didn’t.

Image Description: 'No Entry' barriers surrounding an out of service lift/elevator. A repair man is trying to fix the lift.
Image Description: ‘No Entry’ barriers surrounding an out of service lift/elevator. A repair man is trying to fix the lift.

At this point, I was left with no other option than to be manually carried down two flights of stairs by a member of staff. Talk about awkward!

Well, it was either that or, frankly, I’d probably still be stuck there now.

Thankfully, I’m teeny tiny, my wheelchair was lightweight and foldable, and the guy who carried me was young and smelt amazing! I was tempted to ask what he was wearing but thought better of it. I’m not that weird…

It was fortunate that I wasn’t in my current powered wheelchair. If I had been, I honestly don’t know what would have happened…forever stranded in TJ Hughes!

It’s a memory that’s imprinted on my mind. It shouldn’t have happened, it was annoying, undignified, embarrassing and yes, at the time, I was thoroughly pissed off!

Although, on reflection, it is pretty funny. Got to laugh, right!

Of course, it made me wary of using lifts in the future. But I really don’t have a choice! I’m not going to avoid them and miss out just in case something bad happens.

It’s inconvenient at the time but always resolvable.

IF I do ever get stuck again, well, then I’ll worry about it…IF.


Side note ~ If you are fit and able, and have two fully-functioning legs, please use them! Kindly take the stairs and let those in need access the lifts/elevators. Ta muchly!

Scoliosis | Why I Chose NOT To Have A Spinal Fusion

In my latest piece for Muscular Dystrophy Trailblazers, I explain how and why I chose NOT to have a spinal fusion, as a child.


My Experience

I was offered corrective scoliosis surgery at the age of nine.

Back then, I had a general diagnosis of congenital muscular dystrophy,and was able to walk short distances wearing leg splints. Many years later, my condition was specified as Ullrich congenital muscular dystrophy.

At the time, I had no idea why I was going to see a Consultant orthopaedic spinal surgeon. I was nine! To me it was just yet another appointment.

There was no faffing around; this doctor was straight to the point! I was told I needed imminent corrective surgery to prevent further decline. I was horrified to hear the graphic details, the lengthy recovery period, and how it could even prove fatal.

Of course, I now appreciate that with any surgical procedure, doctors are obliged to inform the patient of every potential risk and outcome, including death. But this was unexpected news to take in at a young age.

How I Made My Decision

As a child, I annually attended Birmingham Heartlands Hospital, where I saw a paediatric neuromuscular Consultant.

My parents and I were never given a prognosis nor any indication regarding if or how my condition might progress. Life expectancy was never discussed and no doctor could tell if I would, in time, come to rely on a wheelchair. We were very much in the dark, living day-to-day.

Frankly, these appointments frustrated and bored me to tears! We would wait hours to see the doctor, and would leave knowing nothing more than we did before.

I have, in all honesty, learnt infinitely more as an adult through my own research, social media and from others with muscular dystrophy.

My point here is that my parents and I had nothing to base our decision on.

It is now twenty years since I was told I needed a spinal fusion. This was pre-Google and pre-social media. We weren’t put in contact with anyone who had experienced the operation. So, other than a verbal overview from the Consultant, we had no other information or point of reference.

After leaving the appointment in a state of shock, my parents told me that ultimately the choice was mine. I decided I didn’t want to put myself through such an ordeal. I was, at that age, considerably more able than I am now, and none of us had any reason to think I would deteriorate as severely as I have.

Do I Regret My Decision?

At the time, it was, or at least seemed the right decision. I was able to weight-bear, finding clothes wasn’t an issue, I was pain-free, and did not require any inhalers, medication or respiratory support.

The procedure back then was very different compared to today, and I was very young. My condition was stable, I was happy and relatively able. Under those circumstances, the disadvantages outweighed the potential advantages.

However, I do often wonder how different my life, body and health might be had I said yes to a spinal fusion.

No one predicted that just a year after the offer was made, aged 10, I would become completely non-ambulant within a very short space of time. Had I any indication that this might occur, my decision may have been different.

Though my scoliosis was considerable, the ‘S’ shaped curve is now much greater. Consequently, my respiratory function is significantly affected and basic comfort is a distant memory.

On bad days, when I’m in pain and struggling for breath, or when I’m ill for months (yes, months) with respiratory infections; I do regret forgoing my one opportunity to correct my skeletal deformity.

But, what’s done is done, and cannot be undone. I’m stuck with me! I can’t change past decisions. I simply have to make the best of what I have and keep moving forward.


I’d love to hear about your experiences with scoliosis and spinal surgery.

– Have you turned down corrective surgery?

– Have you had a spinal fusion? If so, how has your life changed as a result? Is it better or worse?