My Story #WOWDebate2014

I was born in 1967 in Blackpool, Lancashire.  The 3rd of 4 daughters.  My sisters are all able bodied, no-one is sure what happened with me!  I was born with Spina bifida and a heart murmur.  As a baby I had heart failure.  At the age of 4 it was discovered my bladder wasn't functioning and it was removed and a urostomy was fitted, it and me have endured a squeamish friendship ever since.

As a child I barely noticed I was disabled, nothing would stop me behaving like any other child and having 3 sisters, I fought and bullied and argued and played like everyone else.  I was quite good at running races back then and frequently won.  I went to the local Brownies and we were all active with our local church (more from a community aspect than a religious one), going to Sunday school and one year all 4 sisters appeared in the Rose Queen together.  I was never excluded from anything because of my disability.

I went to 'Highfurlong Special School for Handicapped & Delicate Children' as it was called back then.  I adored school.  I loved my friends, loved my teachers and loved learning.  We were pretty well cocooned at school, there was no bullying until you went in the playground, as we bordered a secondary school and the kids from there used to stand at the fence and mimic our walks, or do the typical 'spaz' stuff.  I was a pretty opinionated child and became a gobby teenager so they got as good as they gave from me anyway.

The education was basic, very basic and when I was a teenager I was chosen with 3 other pupils (us apparently being the cleverest) to go to the school next door to study 4 subjects which our school didn't do.  I did Biology, Chemistry, Physics & French.  I loved it, especially French and I came 2nd in the end of term exams.  When the year was over the other 3, all boys, left Highfurlong and transferred to that school.  It was considered that I needed a school nurse too much so I had to stay at Highfurlong, I was devastated.  I lost a lot of interest in school after that.
I took 7 CSE exams and passed all of them with varying grades.

From school I went straight into a Youth Training Scheme learning secretarial skills which involved a placement and my first job as an Office Junior. I used to cycle along Blackpool prom every day and down Red Bank Road and then carry by bike up 2 flights of stairs to the office, it amazes me now to think how fit I was then.  From there I became a Door Cashier at the then newly built Palace nightclub. Then I met a man who was later to become Husband #1 and at the age of 21, I moved to Kent to live with him. I first got a job as a Telex Operator for Global Travel then as a Secretary at Modern Medicine.

From there, Husband No #1 and I were accepted on a training course with Whitbread and trained to be pub Managers. We worked in 2 training houses, one a food pub in Kent and one a North London boozer (hell on earth), then the holiday relief circuit & eventually our own pub in Detling, Kent.  We were there for a good spell but soon became disillusioned with Whitbread and saw them as the profit before people firm they are so we left. I got a job in a video rental shop then as a Training Clerk at Sainsbury's while we searched for our freehouse.

Eventually we found the Three Horseshoes in Duton Hill, Essex and moved in in August 1993, just 6 months after we got married.  For the next 12 years we turned it from a run down dirty horrible pub known for late drinking to a friendly village local.  A lot of people who hadn't used the pub before came back and we started up a community association and took the village post office on for a year when it closed.  It became the heart of the community, most customers lived in the village and as we had no village hall, the pub became the focal point.

I was a lot fitter then which is a good job as I was on my feet most of the day.  I used to do half of the bar work every day, all the cooking, all the bookwork and some of the cleaning, organised events, sat on committees and socialised, it was here I made friendships which endure to this day.
In 1994 I contracted Septicaemia which led to Endocarditis and was quite poorly for a good few months and in 1997 my urostomy threw a wobbler and had to be re-sited which meant major surgery at the Middlesex Hospital in London.  That knocked me quite a bit too.

In 2001 after years of having my confidence undermined by my verbally bullying Husband, I decided enough was enough and left him, which also meant having to leave my lovely pub and home.  For  a couple of years we continued to run it together but lived separately, but eventually that became impossible and I left totally.  I got a job as a receptionist at a local newspaper and in 2003 I met a man in Manchester (via the internet) who eventually became Husband #2 and in 2004 I moved to Manchester.

By now health-wise everything was starting to fall apart and my right leg started to swell at the knee and become painful.  I also started having serious problems with urine infections and I was diagnosed with chronic kidney disease, stage 2 back then.  Over the years which followed my mobility reduced further and further, it was like the decline was stuck on fast forward and soon I was having to be pushed distances in a wheelchair.
Then, horror of horrors I started to have problems with continence which got so bad I had to stop working due to accidents occuring at work and the embarrassment was crippling.  As I'd always been a very positive, cheerful person, this really knocked my confidence and I started to not want to leave the house.  Investigations were done but basically no-one seemed to be able to tell me why it was happening and what I could do to stop it.  I looked to my diet and tried stopping various things and eventually after stopping drinking coffee things calmed down.  But by now I wasn't keen on daring to go out of the house, the fear that something *might* just happen was enough to scare me in to staying home, where I felt safe.
I had very dark days where I remembered how social I'd once been and how life had changed.  I always knew my health would slow me down one day but I really wasn't prepared for it so soon.  I was only 41 at this point.

Things continence wise improved slightly and I managed it ok, as did my lovely husband.  I suffered the humiliating ATOS medical and was appalled as everyone else is by the lack of interest, empathy and human decency shown in the questions, the questionner and the whole sordid process. I was awarded ESA and for a while the pressure of not being able to bring in a wage was eased although the feeling of being inadequate didn't go away and never has.
In 2011 I was barely mobile, not being able to get around my own home without a stick and holding on to things constantly and after a few quite bad falls it was discovered that my right leg was actually dislocated and couldn't be corrected without a knee replacement.  I spent 6 months with a cricket splint on and in immense pain.  During this time the government changed it ESA rules and I was told mine would end as I was in the Work Related Group, and now the rules were changing from an assessment every 2 years to only being allowed to receive the benefit for 1 year.  I appealed and asked to go in to the support group to as it was for people with long term illnesses/disabilities.  I went to court in January 2013 (with my dislocated knee) stating I fitted 3 of the 12 criteria but they disagreed and I lost my appeal.  The same year I knew 2 people who won their appeals who are fiddling the system, so that shows what a shambles the whole system is.
In 2013 I finally had my total knee replacement.  I knew it was done because of the dislocation and to relieve pain, it hasn't given me any better mobility but at least its not as painful any more.  My mobility is very poor now and I go nowhere without a stick or two and even at home, where before I always managed to hobble & wobble my way around, I now use a trolley to support me.

Financially things are getting worse.  We lost that benefit and I have the threat of DLA be reassessed in the future.  For the first time in the 46 years I've been on this planet I actually feel disabled, but not because of my disability, because of the way this country; it's politicians and its evil main stream media demonises anyone who is disabled and anyone would claims a benefit.

Remember folks Child Benefit is a BENEFIT, the clue is in the name, as is the old age pension.  Does that make everyone with children and anyone over retirement age a benefit scrounger too?
Also remember, tomorrow you too could need the welfare state.  Tomorrow you could start to feel unwell and be diagnosed with a life limiting, disabling illness or disease which means you are unable to work.  Not that you can't be arsed to work but that you are unable to work and what will you do then?  You should be able to rely on the system in place to protect you if that happens.  But that system is being eroded away by greedy, self serving politicians.
DO NOT believe the media when it quotes figures at you about how many people claim fraudulently, do your own research, find out for yourselves.
Any system which exists is bound to have people who will exploit it, I mean just look at the MP expenses scandal.  Just look the the banking fiasco.  Greedy fat-cats who cream off the excess for themselves and make the less fortunate scapegoats for their mistakes.

It angers me beyond belief that I have worked all my life.  I have never profited from being disabled, I've never used it to get out of doing anything I should have been doing.  And in these years when I find myself in the position of having to battle on a daily basis against my own body's reluctance to function properly or even in a way which just allows me to be the person I know I can be and so want to be, I find I also have to fight the system and the faceless, feeling-less people who run it.