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Submitted on
January 15, 2011


48 (who?)
Reposted from my journal.

(Today is January 14th, the start of One Month Before Heartbreak. A month from now on Valentine's Day the flawed DLA consultation ends. Please support us and help ensure that disabled people's hearts are not broken and our lives not lost. You can help by signing the petition, by sharing these blogs on facebook, twitter and anywhere around the internet. Use our template letters to write to your MP,  to Maria Miller the very not disabled minister for disabled people, contact your local or national newspapers or TV stations and demand to know why they are not giving adequate coverage to the cuts to disability benefits. But most of all, listen to the words written, spoken, sung or shouted by disabled people and carers and ask yourself if this is really the Britain you want to live in.)

I realise that most of the people reading this aren't from Britain, and those British people reading it aren't disabled, but that's why I'm writing this here. There is no point blogging about the hardships disabled people face in Britain on my usual blog, as my readership there already know full well what we're facing. I'd be preaching to the choir. If we're going to make any sort of difference we need help from the non-disabled and the international community alike.

This, unfortunately, means swallowing my pride a little. I try to keep my dA persona entirely separate from my other internet ones. Specifically, I try to keep my whiny emo crap out of here, bar a few pieces of writing that I let slip through. But fuck it. This is for a good cause.

*takes a deep breath*

I'm going to tell you my story, from start to finish, as posted on The Broken of Britain where we have been trying to tell the world our individual stories, so they can see us all as people, not just benefit scrounging scum who deserve nothing more than contempt, suspicion and outright hatred.

Here goes:

I was born with a connective tissue disorder called Ehlers-Danlos Syndrome. I also have multiple secondary conditions - Fibromyalgia, Irritable Bowel Syndrome, Postural Orthostatic Tachycardia Syndrome, Depression, Social Anxiety, and possible but undiagnosed ADHD-PI and Aspergers. The EDS was a recessive gene in my family and had not been seen for two generations. The last person to have it was my paternal great-grandmother, who was undiagnosed until it was too late. As a result, nobody recognised the symptoms that both me and my sister were showing practically from birth.

We were clumsy, we had late (physical) developmental milestones, we were constantly covered in bruises and scrapes and scars and had no idea how we got each of them as they were so common. We were in pain but unable to express where or why. When everything hurts, it's difficult to give specifics and when you don't understand that subluxations (partial dislocations) exist, all you know is that it hurts and feels 'wrong'. When children give such vague answers people assume they're making it up for attention. We were told over and over that everybody gets aches and pains and it was perfectly normal. When we didn't want to do things that the other kids did (running and playing games of tag etc) we were told that we were being lazy and antisociable.

These things were drilled into me from such a young age that I believed them. I pushed myself past my limits trying to be 'normal' and do 'normal' things. When I reached puberty my health dropped dramatically due to the extra stresses on my body. The pain grew and my cognitive functions began to slip. I was being abused at home by my mother and bullied at school. Every authoritative figure I tried to speak out to agreed with all the previous ones - I was lazy, antisociable, rebellious and awkward. I had an 'attitude'. I could no longer concentrate on my work. I was depressed and in chronic pain. Every moment of every day was a struggle for me. I lost the scholarship I had at one of the top private schools in the country as I could not bring myself to concentrate any longer. I have always loved to learn, I have always had a thirst for knowledge that has never been quenched, and yet when I could no longer do my schoolwork and I reached out to ask for help - I was just being lazy. I wasn't trying hard enough. They knew I could do better if I just tried. Why was I being so awkward? Why did I have to turn into such a rebellious teenager?

I finally got a doctor to listen to me. But as a young female with obvious mental health problems he diagnosed me with depression and stress, writing off all my physical symptoms as aspects of these. He gave me antidepressants and sleeping pills and sent me on my way. Neither of those did anything for me but he continued to insist that all my problems stemmed from stress and depression and piled more pills on me. He also gave me a note to give to my teachers to get me out of any trouble I might get in from not doing homework etc. The first (and only) teacher I showed it to screamed in my face that I had no idea what it was like to be stressed. She was a TEACHER. SHE knew stress.

My health continued to deteriorate. Some days I was in so much pain and so exhausted that I couldn't get out of bed. I played 'acute' sick to get out of school. Nobody ever believed me. I hated myself for doing it - I loved school, but was too 'lazy' to get up and go. When I was at school, I would hide in the toilets to get out of having to do PE. I would spent the entire lesson crying quietly to myself in a cubicle, hating myself and feeling so ashamed for not being able to do it. When I was caught and forced to do it, they tried to make me run laps as a punishment for skipping the class. I'd sublux an ankle, without realising what I was doing, try to run on it, but fall flat on my face. My teacher dragged me up and pushed me forwards. No matter how many times I fell, he would keep doing it as he 'knew' that I was only faking it and he wouldn't tolerate my laziness.

I had no social life. Everyone at school laughed at me for faking illnesses, for having so many days off sick. They made fun of me when I tried to join in PE. They snickered behind my back during tests when I was trying so hard to think straight that I was practically in tears. They poked me, hard, and due to Fibromyalgia even soft pokes hurt, then laughed at me when I screamed in pain. I was so melodramatic, they said. They threw things at me, which left me in tears and with huge bruises. I tried to show people the bruises, but they insisted that I was such an attentionseeking liar that I'd bruised myself to try to get others in trouble.

In short, my childhood and teenage life was hell. My mother abused me at home. I was bullied at school. I had no friends and nowhere else to go. I would lock myself in my room by sitting with my back against the door so that my mother couldn't come in and get me.

At 16 years old, I moved out. As soon as I was legally able. I was too young to claim any benefits. I was told that if I was still living at home at 16 I could claim JSA, but having moved out I wasn't entitled to it until 18. I had to work full time to afford rent. My body couldn't take it. I had as many days off sick as I had at school and that was too much to be able to hold down a job. I bounced from one meaningless job to another, under constant emotional and mental stress of not being able to afford rent and being terrified that I would have to go back to the mother and enduring more years of abuse.

I had online friends at this time as I had discovered the joys of the internet and how much friendlier people were when they didn't see you faking your way out of physical jobs on a daily basis. I met up with one of these friends in real life and we ended up falling in love after that. He knew about my situation trying to make rent, but not about any of my physical problems. I was still far too ashamed about my own laziness and the lies I came up with so I wouldn't have to do things.

He convinced his mother to let me move in with them for a VERY low rent and when he made me the offer I happily accepted. It meant moving about an hour and a half away from where I was but I was giddy with excitement nonetheless. It took me a while to find a job in my new town as I had no 'local experience' and a pretty poor work history of jobs changing every couple of months. And no qualifications other than very low GCSE grades. But my boyfriend was happy to continue paying rent for me out of the JSA he was claiming.

A while later we moved out of his parent's house into a nearby flat. My boyfriend had a full time job and I was using all my energy to keep the house clean and applying for roughly 20 jobs a day. Whatever I could find that I might possibly have qualifications and experience for, I applied for. Anything that didn't require any experience or qualifications, I applied for. It still took me over a year to find a job. By that time I was 18 and would have been eligible to apply for benefits, but I was adamant that I wasn't THAT lazy and when I was offered a data entry job I took it. It only lasted a few months as my typing skills were too good. I was too fast at it and ran out of work for them to do. I had been clearing up an eight-month backlog.

I found another job fairly quickly - as an audio typist/medical secretary working in mental health. I was quite pleased with this as it was an NHS job, had good prospects for promotion and a career etc. I'd started to feel twinges in my wrists and fingers when typing for too long, and dealing with 'writer's cramp' but I figured this was fairly normal. I walked the half hour to my job and back every day, despite how much it pained me to do so. I kept telling myself that it was exercise, and like everybody kept telling me - I was just lazy and if I exercised more things wouldn't hurt. I kept telling myself this over the next few months as the daily walks got more painful and the typing left me unable to use my hands for the rest of the night after I came home from work. Surely I would get my second wind soon. This would start getting easier.

I started longing for the weekends - not so that I could go out drinking with my friends as everybody else my age was doing, but so that I could spend two whole days in bed without having to move.

I took more and more days off sick from work so that I could lie in bed and rest. My life consisted of working and resting, there was nothing else. My boyfriend had to force me to eat in the evenings because if I was left to my own devices I wouldn't bother - it was too much effort and too painful to bother with.

I was in such agony from my wrists, hands and fingers that I had to take breaks every five minutes at work. It was five minutes of typing, ten minutes of resting, repeat all day long. My work started to suffer but I had been so good at my job that I was ahead of myself anyway, nobody really noticed the drop.

I kept telling myself that it would get better and I just had to work through this. That everybody else was working full-time without anywhere near as many breaks as me, AND managing to do housework and have a social life. That if I couldn't even work full-time without taking at least one day off sick a week then there was something wrong with me; I WAS as lazy as everybody kept telling me I was.

It didn't click that maybe my problems were more physical until my boyfriend tried to hold my hand once, on a bus full of people, and I burst into tears because the act of holding hands was hurting me so much that I could no longer wear my happy face even in public.

I went to the doctor at that point, who started investigations and advised me to stop working. I couldn't bear the thought of being even lazier than this and having to claim benefits, so I continued  working despite the agony for another three months. By that point I'd done so much damage to my wrists that they will never be the same again. Us EDSers don't heal very well. I can still type to some extent but I need to take far too many breaks for far too little writing and what little I do stops me being able to do any other kind of work.

All of my joints hurt. All of my joints sublux and dislocate. I can't walk very far, on days when I can walk at all. There are very, very few activities I can do with bad wrists. When 'normal' people injure a joint they rely on other joints to over-compensate. My upper body cannot compensate for my lower body's problems. I can't use a cane or crutches or self-propel in a wheelchair because of my wrists. The NHS won't give me a power chair. I'm housebound until someone has the time to push me around in my manual chair.

My cognitive problems and inability to concentrate coupled with social anxiety and trouble communicating mean that claiming benefits is a harrowing, terrifying ordeal for me. The physical problem of not being able to fill in the forms myself is the least of my problems. The errors in the system of lost claims and bank account numbers and countless problems where they don't even know what the problem is overwhelm me. I'm unable to use a phone without crying and having panic attacks most of the time. Anytime anybody questions me about my abilities I break down - it's so unbelievably hard not to scream that I'm a lazy piece of scrounging scum. I put off doing things that need doing because I don't want to cope with the tears and the break downs. I then forget that they even need doing until the next time I dare to look at my bank account and break down worrying and crying about how to pay rent and buy food.

I am currently on low rate care and no mobility of DLA, despite needing help with pretty much all my daily activities and not being able to walk most days and only as far as the corner shop on the days when I can (pointless, as I can't carry any groceries home). I tried to claim ESA but failed their medical assessment with only 9 out of 15 points. I had a look at the points system online and by my calculations I have a combined total of 72 points from both physical and mental problems but they would only give me 9 points for not being able to use a pen. I'm trying to claim housing benefit but am wallowing in bureaucratic nonsense that I don't know how to handle.

I am living in poverty. I have always lived in poverty except for that one year when both my boyfriend and I were working full-time. That year was such a living nightmare for me that I couldn't even enjoy the financial benefits of being able to afford take-away when I couldn't manage to make myself food. I'd rather not eat but live in a world that consists of slightly more than just pain and sleep.

And now the government are making it even harder for me to claim benefits. They're cutting 25% of people from DLA when only 0.5% of claims are fraudulent. Only 2.5 million people claim this benefit that all disabled people are entitled to. This seems like a lot to most people, but over 10 million people in Britain are disabled. Over 10 million. That's one in six people. But you would never know it, because you never see us out and about. Nearly 8 million of us are living in poverty, housebound and in a lot of cases without internet access or a computer and completely unable to tell their stories.

They're removing the mobility component of DLA paid to people in care homes, forcing even more people to stay inside, a lot of them unable to afford the wheelchairs they need to leave their rooms.

They're removing the Legal Aid funding that so many people rely on to get the benefits they're entitled to, to make appeals against the poor decisions that ATOS (a private American company) make based on medical assessments performed by people with no medical training, who are ticking boxes on a checklist and told that if they don't fail enough people they'll be fired.

They're removing Access to Work, a scheme that helps disabled people get funding for adaptations to the workplace, supplementary to what the employer can afford as 'reasonable adjustments'. Right when they're telling us we need to work and we're 'unsustainable' otherwise, they take away the means for us to do so.

This is supposed to be about DLA, but the cuts are coming at us from all angles. From things that at first glance don't seem to have anything to do with disability, like the cuts to housing benefit. Unfortunately, this is another place where being disabled is vastly more expensive. Accessible housing isn't cheap, and it sure as hell isn't easy to find. I'm still living in a house with stairs because there just isn't an alternative option available. I'm mostly confined to upstairs, where I have a bed and a bathroom, and any time I need food or a drink I basically need someone to run down and fetch it for me. But most of the time there isn't someone there, as without benefits my boyfriend needs to work full-time, leaving me alone, in pain and without vital care for most of the day. And even with him working full-time we're living in poverty. That's how much extra disability costs. And I can't even afford most of the things I need. Making do without adaptations is NOT fun.

They're cutting funding to local councils, and therefore forcing them to make cuts. Most of the councils have been quite good about this and asked the public what they should be cutting, but unfortunately the public hate us. This is leading to special need schools being shut down, loss of care packages and social workers, and less funding to care homes. Just off the top of my head. There are probably more repercussions. Oh, yes, like the social fund for making adaptations to your house. *sigh*

They're not only cutting NHS funding and forcing them to cut back on staff (when they're already way understaffed and overworked. A ward with 28 patients should have 8 nurses. Current average is 4.), but forcing them to accept 20% less admissions and send people home earlier. Think about that for a second. 20% of people ill enough to need to go to hospital, aren't allowed to. If it's not urgent, you're not allowed in. People who were already waiting months and months for tests and diagnoses, to the point where their conditions were deteriorating such that they could never fully recover, now have to wait even longer. I feel we're going backwards here. If you don't LIKE disabled people, why cut hospital funding and make even more people disabled by your lousy care?

They're cutting the Independant Living Fund. Completely. With no back-up plan for anything else. This fund allows 21,000 severely disabled people who would otherwise be living in care homes to...well, not. They may still be too disabled to work, but they're living in their own homes, with their families. They're a part of society. And most importantly (to the government, anyhow), they're actually SAVING a lot of money by not being in care homes. Those places are expensive.

But enough of the cuts, and on to the media. The propaganda and the hatred, and the constant vilifying of disabled people has led to an increased in disabled hate crime. Which, of course, isn't on the same level as racial hate crime and doesn't incur the same penalties. -_-

A lot of disabled people who AREN'T housebound are afraid to leave their homes. For fear of hate crime, fear of someone seeing them out and about (and therefore perfectly fine!) and reporting to the DWP thus causing them to lose their benefits, for fear of random strangers interrogating them as to whether they're really disabled, and how much money they're getting in benefits, and if they really need that wheelchair.

It sounds dramatic, but it really has got that bad. Please don't click that link if you can't handle people talking about suicide. A lot of people are seriously considering that as their only option. A few people already have. I remember a story a while ago about a carer killing herself and her profoundly disabled daughter, because her option was that or slowly starve to death. The paper reported that she'd refused help, and the public hated her for it. But the help just wasn't there. It isn't for a lot of people. And when it is there, it's often not worth it. A friend of mine used to get a social care package in her home, but they would refuse to actually help her whilst she was there as her home wasn't accessible and it was therefore too dangerous for them to help her. So they left her to help herself. And hurt herself. And end up in hospital. Costing the government more money!

Again, it sounds dramatic, but I want you all to think back to Nazi Germany. Before they ever started on racial discrimination, they hated on the disabled. They filled the media with propaganda, called disabled people 'useless eaters' and 'unworthy of living', told the public that it cost far too much to take care of them and that society shouldn't be paying for it. They forced the disabled to wear badges so they would be easily recognised, and when they finally decided to start killing them, the public was on their side.

^If none of that sounds familiar to you, you've obviously not been paying attention to UK news and politics lately. It's fucking scary.

We're all terrified, at least.
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LostInAPhotograph Apr 19, 2011
This is really inspirational. Thank you for sharing. Here my friends and I were thinking Britain was OH-SO-AWESOME; it's just as bad as America.
JesuJesu Apr 4, 2011
I hope you don't mind, but I'm going to post this in a few places.
I may live in America with little to no physical health issues, but I'm behind you 100%!
diabloy Jan 30, 2011  Student Digital Artist
i read this all of the way though i live in britain and i have Ehlers-Danlos Syndrome type 3 in all of my joints and a whole multitde of problems, my whole family have proboblems and i know how hard it it i just wanted to say im behind you all of the way on this
nomis78 Jan 25, 2011  Hobbyist Photographer
im sorry, but i stoped as soon as i noted the pettition wasnt on the downing street website, if you want to have any chance with it, then it should have been posted there

I am disabled myself and truthfully havnt much idea about the changes that are coming to the DLA system i shall look into them myself, but the petition you posted will have no effect simply due to where its housed
ArtByCher Jan 16, 2011   Traditional Artist
I'm not from the UK but I back this 100% Living in the US, and also on disability, I can relate to this to an extent. My money I receive puts me in the poverty bracket and there is always talk about cuts here to. To me this is a definite crisis situation. It's basically throwing people out on the streets. :(
PROkiller16 Jan 16, 2011  Hobbyist Digital Artist
Thank the face of evil and his rent boy for this. The thing no one has realised "Hey, where the hell are the cuts money going to?" And these are billons of pounds.
Signing the petition now.
DJ-Ghetto-Headphones Jan 15, 2011  Hobbyist Traditional Artist
You have my support. I'll get this issue known to my community if it's the last thing I do.
I read this entire post and was left in tears. I don't live in Britain, and I'm not disabled, but I can relate to the feeling of being in poverty and not knowing what's going to happen. We just found out that my mother has a growth in her uterus, and that, if it's not contained in the uterus, it's going to kill her. We don't have the money to pay for the operation, and I'm scared to death. My greatest fear is and always has been losing my mother, and now it feels like it's all too close. If we go through with the operation anyway, without funds, they'll seize the house that I've lived in for my entire life, and we'll be left on the street. Oh, God, I'm so sorry. I didn't mean to unload on you, either, but this story struck close to home, even though we're from different countries. What in the world does the government think it's doing? Its people are suffering and dying because of the changes they're making, and no one seems to care. It's horrible. Anyway, I really feel for you, and this cause. I'll do what I can to spread the word.
I'm right behind you guys. I'll do what I can to spread the word!
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