Some members of my family have very kindly clubbed together to buy me an electric wheelchair. It took quite some time to find one that came apart to go in the car, that my mum could lift alone, and was in our price range but we finally found one.
The batteries slide out and it then folds two ways to make it smaller. It’s supposed to be arriving tomorrow evening and I’m very excited! It is a fantastic feeling – having choice over where you can go and not the horrible feeling of guilt you get when someone has to push you.
Hopefully Debbie at Glamsticks will be able to bling it up for me as beautifully as she does my sticks.
Speaking of, I spent some of my birthday money on my fourth stick which is going to be shades of ocean blues.
Controller of electric-powered wheelchair Belize. (Photo credit: Wikipedia)
Last weekend I went to Colchester Zoo for a Sensory Day with some members of Fair Access to Colchester.
I tried to get a scooter from Shopmobility for the day – they usually have a Paris Shoprider that easily breaks apart to go in a car, which I’ve taken on holiday numerous times. Sadly, someone had taken it out for sixteen(!) weeks and they only had one.
Option two was an electric wheelchair they found in the corner of the storeroom. It hadn’t been used in some time, and didn’t fold up. They charged it up and we went to collect it. We put the seats of the car down, and three people lifted it in with some difficulty. The massive battery underneath made it incredibly heavy and it didn’t disconnect.
Uh oh! How were we going to get it out? Luckily my mum, with help from two other people managed to get it out, and we were off.
The chair was the size of a normal wheelchair – not those massive things you see, and the battery tucked underneath nicely. It went at a decent speed, and was easy to control.
The zoo is incredibly hilly, although they have a yellow line going round that follows the most mobility-friendly path but it was still pretty tough going. It was fantastic. I could choose where I wanted to go. I could keep up with everyone, and no one was exhausted pushing me. Unlike a scooter, I could go right up to things, and manoeuvre myself to see what I wanted.
There were a few hairy moments on steep hills where it didn’t respond to my controls, and someone had to grab the chair before a bowled over an entire family!
Then the battery started draining. It started on five, and seemed to dip down with increasing speed. But we hadn’t reached the elephants – basically what we’d come to see! Determined to make it, we rushed on, skipping the smaller attractions.
An African elephant at Colchester Zoo (Photo credit: Wikipedia)
We made it just as the battery died completely at the furthest point of the zoo. The zoo had an elephant feeding for what they deemed as “registered disabled” people only (although there is no such thing as registered disabled anymore.) We then crowded round the chair to try and find the switch to make it manual, but realised with horror there wasn’t one. It was a dead weight, the wheels totally locked, and weighing a ton.
Finding a zookeeper, we told him off our plight. He radioed the office and asked someone to bring a manual wheelchair, and send help for the other chair. Four zookeepers joined us, and three of them picked up this heavy chair to walk it all the way across the zoo to put it in our car. My mum went with them to direct them, and they then found out our location and drove her back to us. They were total stars and saved the day.
The manual chair was fine for the flat bits, but they were few and far between. My guilt wouldn’t let me ask others to push me up hills, so I had to keep getting out which meant I reached my limit extremely quickly, my back went into spasm and I was totally exhausted. Everyone took it in turns to push me on the flat sections and were so helpful.
So massive thumbs up to Colchester Zoo for rescuing me, although please don’t try and attempt it with a manual chair!! We sent a letter of thanks to the men that carried the chair back to the other, and the one that brought the manual and pushed me for a little while to reach the others who’d continued to the next section.
Colchester Zoo have regular Sensory/Disability Open Days which include BSL Demonstrations, feeding sessions for people with disabilities only, and more.
Their events page shows when they will next be having an open day.
It took me some time to consider using a wheelchair. It didn’t occur to me that I was just as entitled to use those chairs at the front of the shop, as anyone else who needed to. I instead hobbled around, my pain levels ever increasing – until I collapsed back in the car, in agony and exhausted. I decided to give one a go in Asda, when I was with my mum. We whizzed about, and it was amazing! I could spend time looking at what I wanted, with no pain clock ticking over me. I picked which shops I went into based on whether they had a wheelchair available for use.
It isn’t always easy using a wheelchair though. For start, if you are unable to push yourself like I am, you have to give all of your independence over to the person pushing you. It’s hard to explain what this is like as a 23 year old that has been making her own decisions for years. They have the power to decide where you go, which way, what you will do. It’s a very difficult thing to get used to and you have to give all your trust over them.
It’s also an exhausting job for the person pushing you. It’s one thing in to push the chair in the shop, where there is a shiny flat floor. Outdoors there are hills, pot holes, curbs and people and so I feel an enormous sense of guilt over it.
General inaccessibility is another big concern. Many shops, particular older ones, have narrow doors or steps to get up to them. Shops put advertising boards and other objects out on the pavement, so it’s a struggle to get around it. There is a lack of dropped curbs, and many aren’t flush with the road, so it’s a case of whacking against them and hoping for the best. You have to remember they aren’t like prams that you can tilt back – they’re solid and difficult to turn.
Shops love to have large displays you can’t get around, or terrible layouts that require impossibly tight turns. Other shops have fixed chip and pin machines, so you can’t pay for your own items. Many places do not have lifts, and won’t offer service to you if you can’t reach them (despite it being against the law). I’ve been turned away from the dentist I have used all my life, as he refused to treat me in the (available!) downstairs room when I could no longer manage the stairs.
Then I discovered mobility scooters, by joining Shopmobility which gave me access to mobility scooters for a small fee. Suddenly the town centre opened up to me again. I used them to do my Christmas shopping, to meet friends and to go to appointments. I will admit I find them embarrassing to use – people associate them with older people, and particularly because I’m overweight – I worry people think I’m just lazy. Jokes about them on shows like Benidorm, where they call them ‘Crip Mobiles’ and encourage able-bodied people to use them don’t help.
The great points about them were that I no longer had to exhaust someone by pushing me; had somewhere to put my shopping; I could decide where I wanted to go, and cover longer distances. The downsides were the greater size meant even more shops became impossible to get into. We even rented one to take on holiday, that broke up into pieces to fit in the car. It was fantastic, as long as I have someone there to get it in and out the car and set it up. I even explored some caves, using one. The biggest downside is their cost – completely out of my league.
A scooter outside a shop (Photo credit: Wikipedia)
I have also had some horrible experiences using one. Before Christmas I rented one to do my Christmas shopping. It was the first time I had been alone using one and I hadn’t realised how much I had been relying on the other person. I found doors that opened outwards, so I had to sit and wait in the freezing snow for someone kind enough to open it for me. I got stuck in shop displays, and people stepped out in front of me, even on the lowest speed possible and me calling out to them. It was like I was invisible. As my shopping piled up in the basket, I could no longer leave the scooter outside while I went in shops, as I couldn’t carry it all.
I went into WH Smith. First of all I couldn’t get to the part of the shop I wanted to due to the layout of the displays. A customer kindly fetched the item for me. I then attempted to queue, but the layout of the tills was so awful and tight, I banged into the barrier, and all of my shopping fell off – breaking some items. I hobbled off and tried to pick it all up, when it happened again. I was exhausted and tired, but had already entered the queuing system so I couldn’t back out again. Someone stepped over me while I was trying to pick my items up to queue in front of me like I wasn’t even there.
A customer saw my difficulty and pointed it out to three members of staff, who ignored me. In order to manoeuvre round the barriers, I had to crash multiple times into their displays, causing everyone to look at me and probably mumble about scooter drivers being a danger to society. But there was no other choice in order to get out, as it was too tight.
I finally reached the till, and a member of staff walked over and said, “Can I help?” I wanted to throw my broken items at her, but didn’t want to spend Christmas in prison for assault.
I wrote a letter to WH Smith in December detailing the issues, and suggested that due to their till layout, they have a till right at the end for wheelchair and scooter uses, as well as anyone with another disability that would find it difficult to use the queuing system.
They didn’t bother to acknowledge my letter, until the local access group got involved for me. I found them such a help I then joined, and became a committee member. They agreed to make changes, but sadly at this date this haven’t done so.
I now have my own manual wheelchair from the NHS, which is great, but I still long for the day I can get an electric wheelchair and have some independence.
One thing that really frustrates me is that whenever I try and help myself, I find myself banging my head against a brick wall. Just some examples:
If I want a simple referral to a consultant, I seem to have to jump (well, stumble!) though a million hoops first.
I have been waiting over 18 months – not even counting the waiting list for Social Services first – for a disabled bay to be put in, and it’s still not done.
I was given a wheelchair on the NHS that didn’t fold, so I couldn’t really use it properly as it was such a nightmare to get in and out the car.
I have been turned down for Disability Living Allowances twice at Tribunal level, despite lots of medical evidence. (This will be detailed in another post, as I have lots to say about that!)
The council ‘band’ people in categories in order to be eligible for housing. I have been put in a crap band that means I’ll never be able to move , even after an appeal twice now, and have called my medical conditions minor.
I try my best to work, even though it almost kills me to do so, and it’s the reason why some people don’t think I’m as bad as I am.
Okay, just feeling a bit frustrated at the moment!
Credit to ralaenin