Life after Guillain-Barre Syndrome ….. Parking on the Handbag Shelf is Strictly Prohibited!

One of the things I’ve found most frustrating since becoming disabled is my lack of independence. I can no longer just pop to the shops if I want to buy something. If I suddenly have a last minute date I can’t just nip off to the shops and buy a nice top! Instead, I have to rely on a friend or relative to take me, and push me around in my wheelchair. My wheelchair is cumbersome and heavy and is hard work for the person pushing.

My eagerly awaited new light weight wheelchair arrived a couple of weeks ago, only for it to be too small. My existing wheelchair is a perfect fit at 18 inches. However, they ordered my new one to be 16 inches. I’m no Barbie doll but I’m not seriously overweight either. Yet, squeezing into that wheelchair I felt like ten tonne Tess! When they took the sides off the wheelchair my body flopped over the edge, I felt hideous and embarrassed. Consequently they are having to order me an 18 inch, and I have the pleasure of another four month wait. Patience has never been a strong point of mine, but since having Guillain-Barré syndrome I’ve certainly learned to be more patient!

It’s not just about the unsuitable wheelchair that’s the problem. When someone is pushing me I have to ask to look at everything I want to look at. If I change my mind and want to go back to the same item twice I feel like I’m being a pain. I become a character in a “Little Britain” sketch, pointing my finger shouting “I want that one” So not only do I have to ask someone to take me out, I’m at their mercy when we arrive!

I have a good friend who is a similar age to me. Due to a serious illness she had to have a double amputation, and consequently wears prosthetic legs. She has been a great friend to me and a true inspiration. We understand each other’s struggles and she has given me invaluable advise in dealing with my new life as a disabled person. When she first suggested I registered for Shopmobility I was a bit apprehensive. However, after getting more and more frustrated at my lack of independence I decided to give it a go. Once we’d arranged the date I found myself getting extremely excited at the prospect.

So today we headed off to the Shopmobility in Fareham, Hampshire. Armed with my ID and proof of address I had butterflies in my tummy. The volunteers at the shop were friendly and helpful. After filling in an application form I had to go in the car park for a lesson and test. After being shown how the scooter worked I had to do various manoeuvres including a figure of eight and reversing. The woman was satisfied that I could control the vehicle and that was it, I was free to go!

So off we went side by side on our scooters. Throughout the day I was shocked at how many people looked at us. We came to the conclusion that because we are both blondes, in our early forties, people probably thought we were out on a jolly, just messing about! The staff in the stores were brilliant and gave us both a lot of help and support. However, the public weren’t so obliging. On entering the shopping centre a woman gave my friend the most horrific dirty look. How dare she have to step slightly to one side to allow my friend to turn the corner. I realise pedestrians have the right of way, but the looks we got from people for being in the way are so unnecessary. They should just be grateful their legs are in perfect working order and they don’t need to use one.

The basket on the front of the scooter has a really handy chain in it to stop thieves swiping any shopping bags. In one shop I was so distracted by a gorgeous handbag that I crashed into the glass shelf. The shopping basket got caught and I had to force myself backwards off of the shelf. I then promptly got stuck and couldn’t get out of the section I was in! Luckily my friend has had plenty of experience, and supported me as I found a way out!

I kept forgetting to reduce my speed control when I entered a shop.  I nearly took out a whole row of shoes in one shop, whilst reversing, because I forgot to adjust the speed! I also embarrassed myself in another shop by getting an item of clothing attached to the velcro that held my stick in place on the back of the scooter. Fortunately a member of staff saw the funny side and helped remove the item!

I was really proud of myself when I independently went in to a changing room. After trying on my clothes I could hear a beeping sound. I assumed it was the shop’s security system or something. However, I wasn’t so convinced when the sound followed me. The lights on my scooter were flashing and were making a horrible, loud beeping noise. My friend decided to press any button she could find and finally the noise stopped. Somehow I’d managed to put my hazard lights on!

Luckily no members of the public got injured during my adventure! I nearly crashed into an elderly person’s leg when I accidentally leant on the accelerator whilst queuing for my lunch, but fortunately I stopped with millimetres to spare. I think the whole of Fareham breathed a sigh of relief when our scooters were returned in one piece and we headed home!

I am so grateful to my friend for telling me about Shopmobility, and showing me how to use it. I am a self confessed shopaholic and knowing I can now take myself out shopping, without having to rely on others, feels life changing to me. It’s something I always used to take for granted, but now it means the world to me. I think maybe I should invest in some “L” plates for next time!

Life after Guillain-Barre Syndrome ….. The Customer is Always Right, Unless, of Course, They’re Disabled!

When I’m not recovering from rare neurological illnesses, I find myself working for a High street Bank, and have done so since I was sweet 16, oh so many years ago! We are taught to value all our customers, and to ensure that those with disabilities are made to feel welcome and safe in our establishment. Unfortunately not all companies share the same values. I would like to share with you two events that took place whilst I’ve been out shopping over recent months …..

The first took place in a well known Fashion store. I was on one of my first shopping trips since coming out of hospital. I was accompanied by my Mum and my two daughters. Loaded up with various items of clothing we headed for the changing rooms, where an assistant directed us to the disabled cubicle. My Mum parked me in the far left corner, and then my girls promptly started trying on clothes. They are at the age when even my Mum and I have to look away as they change, but we’d bundled into the one room as we had a lot of stuff between us.

I was in the middle of trying a top on, when, suddenly the double curtains to the cubicle flew wide open. An assistant told us in an extremely loud voice that we were to move to another cubicle immediately, as there was a disabled person waiting to come in. My poor daughters were mortified and desperately trying to cover up, as everyone in the changing rooms were now gawping at them. My Mum asked what on earth she was talking about, to which the woman repeated herself, again asking us to gather up our stuff and move. My Mum said nothing, and just pointed towards me. The assistant then popped her head round the curtain and saw me sat in my wheelchair looking none too pleased! She then quickly retreated, apologising for bothering us. However, the damage had been done. As the four of us left we felt like criminals, and I felt as though everyone was looking at me. I’m still very self conscious of my wheelchair now, but when I first came out of hospital it was a hundred times worse. To feel humiliated and to be stared at was just horrible. We couldn’t get out of the shop quick enough. In their defence the company did compensate me with a generous amount of gift vouchers, after they received a strongly worded email from me!

My second complaint was sent to one of the UK’s biggest supermarkets. I had been in the store picking up a few bits and pieces in a basket, whilst my youngest daughter pushed me in my wheelchair. When we reached the check-out I placed my basket of goodies on the conveyer belt (Which in itself is difficult for me, as my hands and arms have pins and needles 24/7) The look the cashier gave me as I did so was unbelievable. It was as if I’d committed the crime of the century! My daughter then pushed me down to the packing end. The cashier then promptly grabbed my basket with one hand, and tipped the whole thing upside down. Several of my new items then fell on the floor “You can’t put your basket up here” I was then informed “You have to empty it first” I wish I could tell you I came up with a witty comeback, but unfortunately I heard myself apologising with embarrassment. She then continued to serve me in silence, looking at me as if I was something she’d just wiped off her shoe. Once again we couldn’t wait to get out of the shop. I did receive an apology in person from the store manager, as he gave me a gift card to spend in store, but again it was too little too late.

Disabled customers should be treated with exactly the same respect as an able bodied person. Yes I appreciate that baskets should be emptied, but if someone is physically struggling then help should be given, not criticism. As for exposing them and humiliating them in a busy changing room there is just no excuse. I hope in the years to come more and more companies will train their staff to show more compassion. However, if everyone just treated others as they wish to be treated themselves no training would be necessary. After all, these shop assistants will never know if one day a minor illness may leave them wheelchair bound, and they may just want someone to show them a little respect.
Rant over!