Ableism

So here is little old 5ft 1” me at 8 and some stone. I have a condition called Ehlers Danlos which causes me to dislocate easily. Since the birth of my 2 children my hips have lost their stability and sub-lax frequently. (Partially move out the joint socket) the same happens with my wrists & knees on a regular basis. Most nights I dislocate my big toes on the duvet and often wake with ribs out of place. I don’t have a central solid core muscle so I fall over very easily.

Some 4 years ago I was on my crutches walking into a food place and a 6ft large teenage boy didn’t see me and stepped backwards into me. I hit a wall side on then ricocheted off that onto the floor on my back. I’ve been left with a damaged neck which means I cannot turn my head properly and it’s very painful and affects my movement and use of crutches.

As a side line I also have severe allergies and postural orthostatic tachycardia (pots) on top of chronic pain!

To make life easier and safer I use an electric wheelchair to go outside and shops etc in. It keeps me safe from falls, allows me to do way more and helps me live life a bit more.

I’m married with 2 teenage daughters and a wonderful husband of 30 years who works really hard to support us all, I can’t maintain health to be able to have a regular job. I claim pip and that enables me to have a car that’s specially adapted for me.

So now let’s talk about wheel chairs. Have you ever looked at the price of chairs? Seriously? A few years ago we went down the route of applying for a chair via the nhs to find as I’m not a paraplegic I have no remit to ask for one. Not even a manual chair. OT tried to help but as my home isn’t adapted I’m not entitled to a grant towards a chair; speak to the adaptations team and they say as I don’t have a chair I use indoors I’m not eligible for a building adaptation grant. So I’m baffled as to how anyone gets assistance to get a much needed mobility device! I spent months talking to various agencies and the upshot is as my husband works and we aren’t both on means tested benefits then there is no help. It doesn’t matter that we only just manage on one wage income for a family with (at that time) children.

Me being me I muddled on doing my best but found I was going out less and less and spending more time laying down to recover. At this point I was even refusing to go on family holiday as I wouldn’t be able to do anything. It was affecting our lives badly. I took a leap of faith and searched through hundreds of suppliers on alibaba and found what I thought was perfect chair.

The chair was red and small - which is hard to find as most are designed for users over 25 stone. There is a massive gap in the market from kids under 8 to adults off a larger height and weight. There needs to be a teenage or small adult market!!! And have you seen how ugly mobility chairs are? I spoke for a good 3 months with the supplier before parting with £1200 on my newly acquired credit card set up just for this. I was so excited. I had a manual self propelling chair with a built in motor coming. Just to get it into the UK without vat and import duty charges took a week and a mile of paperwork.

Finally it arrived and we dashed off to local airport customs zone to collect it where there were fees to be paid just to collect it - so more money was coughed up.

Guess what - the chair was blue and the bariatric size. For large bottoms and heavy weighted adults. I was devastated. I had placed my dreams on this wonderful chair I had sourced and ordered. The supplier refused to exchange it. They actually said British people are too big for the smaller chair so we changed your order. Use a duvet in it as it is a cold country. I had to get alibaba involved and a compromise was reached and I received half what I paid back and kept the chair.

As you can see I wedge a large handbag next to me to hold myself stable within the chair. Having the ability to get out was amazing. 18 months in and a fault happened. I was coming up to a crossing on a main road, I was using the electric pack and as I stopped, the chair carried on rolling into the road; a quick reacting stranger saved me from a terrible incident, thankfully, by grabbing the back of the chair. The auto breaks had failed. So now I had to make sure if I went out I had an adult with me to grab the chair when needed. The chair only had a one year warranty. I tried contacting the supplier to find a replacement part but they had ceased to trade via alibaba and I couldn’t find them. So I muddled on.

For my husbands 50th we saved up for a long weekend away in Rome. The chair was going to be invaluable and wow how lovely Italians are. I’ve never had so much help off people ever. Whilst out there the batteries failed more and more quickly - a 5 hour charge was giving me 20 mins of battery life rather than the original 16 hours and any bumps immediately shut the motor down. When we got home we had a look at it but couldn’t find what was wrong. The batteries should’ve been lasting longer as they were holding charge, all connections seem in place but it’s just not working. Now it’s just a mammoth 9 stone manual chair that someone very strong 💪🏼 can push me about in.

When lockdown was at its heights and only one person could do the shopping it meant that was never me as I always needed someone to help me! Forget going out alone as I always end up having an accident.

Do you know being disabled and using a mobility device automatically means everyone has the right to spout an opinion of you and your situation wether you asked for it or not. Here’s just a few of the normal incidences I’ve experienced out of the home in my chair or on my sticks:-

Old ladies tutting and saying “people like you shouldn’t have children”

A very obese woman on a mobility scooter actually parked up by my car as the kids got my chair out to tell me I was lazy and to get off my backside and walk as people like me encouraged others to judge them.

In a supermarket with my children using sticks whilst eldest pushed the trolley an older woman walked up behind me and pushed me face first into the broccoli display whilst shouting benefit scum, you disabled bitches are stealing my taxes, get a job. At the time I was running my own business so I had a job.

The time the boy stepped back into me and left me with this collapsed neck. A pure accident that had it been someone able bodied they would’ve just been able to side step and avoid being knocked over.

I’ve been refused access on to a bus because I hadn’t contacted the bus company for permission to use my wheelchair on their bus. My nearest bus stop isn’t even wheelchair accessible. Most paths aren’t. Anyone who has pushed a pram will understand my difficulty there!

Trains - you have to phone and pre book 48 hours in advance and cannot just catch any train 🚂 spontaneously for a day out like everyone else can.

Then let’s look at last week. I took my girls to local shopping centre to pick up some clothing essentials. My youngest was in the till queue and I popped to a side aisle to select some work socks for my husband. As I turned to walk back to the queue a lady came rushing down the aisle and brushed my right arm causing me to fall backwards onto the hooks. It was stranded like a floundering ladybird on its back. I called for help and the lady turned and laughed at me before walking to her daughter in the queue. Thankfully my child saw what happened and came and uprighted me. I said to the lady I know it was a complete accident but you could’ve helped me up rather than laughing. I was met with swear words and a lot more laughing. I spent the moments in that queue to the pay desk being pointed at and loudly laughed at by that woman and her daughter (in her 20’s). By the time I got home the Adrenalin wore off and the pain set in. I had several small dot bruises from where I fell back on the hooks and hurt pride. I’ll admit I did have a bit of a cry about it all. This last week has made me realise I have got to get myself sorted again with a working chair to get out and about safely.

I’m fed up. I want to be able to just get in the car and pop to the shops without having to plan for another person to be with me; to go to the park for a walk with friends would be amazing - but it’s too far to go on crutches. Just even to nip to the local shop when I’ve run out of milk would be like wow for me.

This time though I am not going to do the cheap option and source a Chinese factory to buy a chair from. I’m doing it properly. I don’t claim any means tested benefits so I can’t get help to buy a new set of essential wheels. My husband works so that stops any help too. He was furloughed for most of 2020 so we’ve run up credit card debts so I can’t use that now to buy a chair. I’ve had a test drive of a 16” whill chair which is nice and small. It was designed with a lot of input from disabled users. It looks fairly nice, I feel so ugly already with my neck issue so I don’t want it making more obvious with my mobility device. The chair is £4000 though. The price of a small second hand car. The disability goods market is so niche and the customers actually need the products, they have no choice so it keeps prices artificially high unlike the high street where desire is the leading purchase factor.

This is a link to a YouTube video of me having a go https://youtube.com/shorts/K45Em3UcGk8?feature=share

Please only watch to understand more and not to have a laugh at me.

For those of you that are able bodied, do you remember how you felt when lockdown started and you weren’t allowed to go out or to the shops to meet friends? Can you imagine that being every day all the time all your life? Do you recall the fear you had about catching the virus before distancing and masks were a thing? Imagine that was a fear of pain from an accident every time you left the house. Can you imagine? Then there is no one to turn to to help. No support structure in place for disabled people of a normal, surviving life just, income. So you’re stuck. Stuck. Imagine running out of milk and not being able to just nip to the shop 500 meters away. The frustration, the angst, can you imagine?

If you can then please help. Please consider paying a tip for my story. I’ve laid myself bare here which in itself comes with a certainty someone will be judgemental and attack verbally. So far I’ve raised just over £800.

I’ve just come to submit my story and do you know what? There is no options that are for disability. There’s pride (which I’m glad to see) but there isn’t health or disability on there that I can see!! The world is ableist everywhere!