As has been discussed by The Broken of Britain before. the proposed reforms to Disability Living Allowance (DLA) are flawed, and no more than cuts in disguise. Stopping the changes to DLA won’t be easy, but there are things each of you can do, either as members of the public or elected representatives. Here’s a guide for those who want to fight:
Members of Parliament: If you hold this office, use it! The first thing to do is sign our petition and to ensure that people know that you support it. You may also wish to tell your disabled constituents. Another possibility is tabling an Early Day Motion opposing the DLA reforms/cuts – or support it if one has already been tabled – and getting colleagues to sign it, as a measure of opinion. Thirdly, you can table an Oral Question on DLA reform during Work and Pensions question time on Monday 10th of January 2011. Lastly, apply to the Speaker’s Office for an adjournment debate. If possible, try to arrange this for Monday 16th of January 2011, as The Broken of Britain has plans (explained below) for the 14th-16th of January.
Lords/Ladies: Again, the first thing to do is sign our petition and to ensure that people know that you support it. You may also wish to table a question to the Government on DLA reform. Lastly, you could table a Question for Short Debate on DLA reform.
Members of devolved legislatures: Cuts to DLA will impact on health spending, social services and local government, not to mention the secondary impact on education. As such, devolved legislatures in Scotland, Wales and Northern Ireland are well within their rights to ask serious questions of the UK Government on the issue. As well as signing the petition, member can table a statement of opinion on the DLA reforms. You can also ask the Minister with responsibility for health or local government an oral question, forcing them to put pressure on the Government.
Local politicians: It is important that the pressure on the Government comes from local politicians too. The budget for social care will be hit in your area too, so it is important that you ask questions of the relevant portfolio leader on your council, forcing him to transmit concerns up the ladder.
Members of the public: We may feel quite powerless at times, but there is a lot we can do to maintain the pressure. To do this, follow the steps in this Campaign Resource. The 14th-16th of January 2011 will be the date of The Broken of Britain’s blogswarm, entitled “One Month Before Heartbreak”. The DLA reform consultation end on 14th February, Valentine’s Day, as BendyGirl explains. Between the 14th and 16th, we hope that thousands of people will write – preferably on a disability-related topic – supporting The Broken of Britain and our campaign. If you want to go further, phone your constituency office and ask for a face-to-face meeting with your MP so that you can tell them why they should oppose DLA reform.
NB: Rosemary O'Neill of CarerWatch has another idea for campaigning. If you are unable to protest outside of your home, get your MP to come to you! Phone your constituency office and try to get your MP to visit you at home. The 11th of January is the last date before the DLA reorm consultation closes, but you could ask for a home visit on any date up to then if the 11th isn't possible. MPs are all off from next week until the 10th of January so give them a call at their office to arrange something. Remember, you have a right to see your MP, and if you are not able to make it to see them, they should come to you. When they d visit, sit them down with a cup of tea and tell them your fears of losing DLA.
Non-partisan UK-based Disability campaign. Advocacy for people with invisible illness and/or physical & mental health conditions. Also Carers, their Families and Friends. Our individual voices are too quiet to be heard, but collectively we can shout loud enough to drown out this tide of abuse against us. Disability Hate Crime, lack of full legal protection, people in care homes costing too much to be let out and not one political party willing to fight for us.
Saturday, 18 December 2010
Friday, 17 December 2010
Announcing "One Month Before Heartbreak"
I’ve been thinking about things that we can do to raise awareness of The Broken of Britain and our cause. This post is to announce our newest venture.
One Month Before Heartbreak
A Broken of Britain
Blogswarm
14th – 16th January 2011
What is it?
It’s something a bit similar to Blogging Against Disablism Day (BADD). Although I will run this yearly if I need to, I’m really hoping not to need to. Basically it’s people getting together to all blog on a subject or a theme at a specified time. The hope is that by all writing at the same time it raises awareness and makes more of an impact.
Why One Month Before Heartbreak?
The consultation that’s currently ongoing about DLA reform ends on 14th February 2011. Which is Valentine’s Day, traditionally a day for love but which could severely affect disabled people if DLA reforms aren’t handled correctly. We need to ensure that our voices are heard. We’re holding this event a month before the consultation ends in order to raise awareness of the consultation and give people to chance to respond to it if they wish. Bendy Girl came up with the name of this event.
What do I do?
Basically, write about whatever you want. Obviously, it should have something to do with disability and it would be great if you could mention this event and Broken of Britain. You don’t need to write specifically about the DLA consultation and your personal experience. Those are welcome but this isn’t topic specific.
Nor do you need to write. You can do a video, a recording, write a poem, draw a picture, anything you want!
I plan to make space available on my own blog to anyone that doesn’t have somewhere to share and wants it.
Who can take part?
Anyone. You don’t need to be disabled or a carer or know a disabled person to take part. Nor do you need to live in the UK or be British. For our campaign and especially for this event to be successful we need to get this out to the wider community, including the international disabled community and the non disabled community.
What can I do to help?
Post on your blog, twitter, Facebook, any website you go on about this event. We need to people to know it’s happening. And keep doing so until the date comes. Use the #BofB hashtag on twitter.
I have a more concise version of this announcement people can repost if they wish. Comment here if you want it or let me know where you think it should be reposted.
Take part if you feel able. This event runs over three days in the hopes that more people will be able to contribute than if it was tied to a single day. It’s not necessary to participate each day although you can if you wish.
If you spot something to do with One Month Before Heartbreak that you like, tell the person who wrote or otherwise made it. Who doesn’t love feedback?
Equally if you spot something you like share the link so others see it.
More will be posted about this along with some other ideas on how to take part as we get closer to the time. Please let me know of any suggestions or ideas you have.
Language
Language is important. However people have very different ideas about what is and isn’t acceptable. And they have their reasons for it. For example in some areas “disabled people” is acceptable but in others “people with disabilities” is considered more appropriate. Please respect that everyone has a choice. The Goldfish, creator of BADD, has given me permission to link to her Language of Disability Post which explains more about this.
And Finally…
Please don’t feel any pressure to take part or do more than you’re able to. I want people to stay safe and enjoy this!
Don’t forget the date!
One Month Before Heartbreak
A Broken of Britain
Blogswarm
14th – 16th January 2011
Friendly Neighbourhood Grammar Nazi's Story
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.
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.
Tuesday, 14 December 2010
Template Letter, PCC Complaint re: Jody McIntyre
Some of you have inquired about a possible template letter for registering a Complaint with the PCC about the Littlejohn Jody McIntyre feaure in the Daily Mai. You can use the one below as a guide.
PCC Complaints can be filed online here:
http://www.pcc.org.uk/comp
Please note:
http://www.minority-thought.com/2010/12/richard-littlejohn-plumbs-new-depths-of.html
When Frankie Boyle makes jokes about disabled people, the Mail complains. When Littlejohn does it, the Mail prints it - @MinorityThought
==================================
CCForm : <insert the email address to be copied>
Publication : Daily Mail
Publication Date : 14/12/2010
Headline : I want to go to the demo...
Hard copy : Yes
Online : Yes
Both : Yes
Link to article : http://www.dailymail.co.uk/
Explanation :
I wish to formally file a complaint in reference to a Richard Littlejohn article and its accompanying cartoon illustration about a disabled protester, Jody McIntyre. The article in question appeared in today's Daily Mail in print and online as cited above. Attached for your reference is a scan of this material.
Richard Littlejohn and the Daily Mail are in breach of PCC's Editors' Code, clauses 5i + 12i. The article was discriminatory in tone and context. Furthermore, the journalist and the news organisation were insensitive and disrespectful towards the brutality of Mr. Jody McIntyre, himself a journalist and blogger, at the hands of the Metropolitan Police. Mr. Littlejohn and his employers display an unbalanced and wholly willful ignorance and inconsideration of the factual realities of the case.
This article is further evidence of the continued scapegoating and malicious attitude towards the Disabled in general by this publication.
Respectfully yours,
Lisa J. Ellwood
Clauses : PCC's Editors' Code, clauses 5i + 12i.
PCC Complaints can be filed online here:
http://www.pcc.org.uk/comp
Please note:
- You should include the online link to the article (referred to in the letter):
http://www.dailymail.co.uk/debate/columnists/article -1338336/Stockholm-suicide -bomber-Why-Luton-training -ground.html
- You are allowed to designate 1 email address to be forwarded a copy of your complaint in full. Please be aware that you will *only* receive a general acknowledgment to your own email, so try copying yourself (or a friend who can forward it to you) to have a full record.
- You can also include the scanned image below from the paper itself (referred to in the letter):
IMPORTANT:
You are required to cite which clause or clauses of the PCC Editor's Code are relevant to your complaint. The key two are as follows:
PCC's Editors' Code, clauses 5i + 12i.
The Code can be found here:
http://www.pcc.org.uk/cop/practice.html
I am including details from all pertinent fields which require an answer.
For further reference:
When Frankie Boyle makes jokes about disabled people, the Mail complains. When Littlejohn does it, the Mail prints it - @MinorityThought
CCForm : <insert the email address to be copied>
Publication : Daily Mail
Publication Date : 14/12/2010
Headline : I want to go to the demo...
Hard copy : Yes
Online : Yes
Both : Yes
Link to article : http://www.dailymail.co.uk/
Explanation :
I wish to formally file a complaint in reference to a Richard Littlejohn article and its accompanying cartoon illustration about a disabled protester, Jody McIntyre. The article in question appeared in today's Daily Mail in print and online as cited above. Attached for your reference is a scan of this material.
Richard Littlejohn and the Daily Mail are in breach of PCC's Editors' Code, clauses 5i + 12i. The article was discriminatory in tone and context. Furthermore, the journalist and the news organisation were insensitive and disrespectful towards the brutality of Mr. Jody McIntyre, himself a journalist and blogger, at the hands of the Metropolitan Police. Mr. Littlejohn and his employers display an unbalanced and wholly willful ignorance and inconsideration of the factual realities of the case.
This article is further evidence of the continued scapegoating and malicious attitude towards the Disabled in general by this publication.
Respectfully yours,
Lisa J. Ellwood
Clauses : PCC's Editors' Code, clauses 5i + 12i.
Template Letter in Response to ILF
This is my letter to the Minister for Disabled People in response to the shutting down of ILF. I encourage readers to copy, paste, edit and send their own. Campaigning on this is difficult as there is little information available as yet. When there is, The Broken of Britain will respond. For now, the priority is the campaign to stop DLA reform.
Maria Miller MP
Parliamentary Under Secretary of State and Minister for Disabled People
Department for Work and Pensions
1st Floor
Caxton House
Tothill Street
London
SW1H 9NA
Dear Maria Miller,
Re: Shutting down the Independent Living Fund
It is only a few short days since I last wrote to you, as Minister for Disabled People, urging you to recall the Public Consultation on Disability Living Allowance (DLA) reform. I find myself writing again with regards to the Independent Living Fund (ILF), which appears to be the Coalition Government’s latest target in its war on disabled people.
You released a statement yesterday which announced that ILF would cease to exist in 2015. Many in the disabled community saw this coming, after the Fund was frozen to new applications for this year, but had hoped that you would see reason. Your statement is difficult to criticize fully because there is so little information on your plans except for vague promises of consultation in 2011. This lack of clarity has sent ILF claimants, their carers and their friends into panic. How is it possible for us to correspond with you when you fail to clarify your intentions?
In the statement you claim that “the model of the ILF as an independent discretionary trust delivering social care is financially unsustainable.” There appears to be no justification of this claim. The purpose of the ILF was to maintain and allow for people with high care needs to remain living independently in the community rather than the alternative of residential care. Given the expense of residential care, surely making it possible for 21,000 people to live independently is financially sustainable and eminently sensible.
The statement suggests that you will move “existing users of the ILF in to a social care system based on the principles of personalised budgets.” This means that the financial burden of care for those supported by the ILF will be foisted upon local authorities, who will set their own eligibility criteria and perform their own assessments of care needs. Levels of care provided will then decrease dramatically for those formerly supported by the ILF, and for those who would have applied for ILF in the past. This will mean that many will no longer be able to live independently and have to enter residential care, at far greater cost to the state. For others it will mean that living independently is no longer possible, with the families of these people having to meet their care needs.
The Ministerial Statement is difficult to critique further because of the lack of detail. It is fair that you should issue an immediate statement providing this detail. I also demand to see the DWP’s reasoning for the claim that ILF is “financially unsustainable”, and all documentation on which this claim was based. It appears that the Coalition Government have decided to make these changes without knowing what system will replace ILF, thus making decisions which affect 21,000 lives without due care and proper planning. I wish to receive an answer that confirms or denies this. If you confirm that ILF was shut down without firm plans for the future, I suggest that you issue a personal statement apologizing to the ILF caseload for causing doubt and panic amongst them. If you deny that no plans were made, I demand a copy of this documentation be published on the DWP website.
I am sure that DWP have completed an Impact Assessment an an Equality Impact Assessment with regards to this decision, and I request that both are made available to the public. I expect a prompt and detailed reply. A copy is being sent to the Secretary of State and to my constituency MP, Hywel Williams.
Yours sincerely,
Rhydian Fôn James
cc: Hywel Williams MP (Caernarfon); The Rt. Hon. Iain Duncan Smith MP , Secretary of State for Work and Pensions
Maria Miller MP
Parliamentary Under Secretary of State and Minister for Disabled People
Department for Work and Pensions
1st Floor
Caxton House
Tothill Street
London
SW1H 9NA
Dear Maria Miller,
Re: Shutting down the Independent Living Fund
It is only a few short days since I last wrote to you, as Minister for Disabled People, urging you to recall the Public Consultation on Disability Living Allowance (DLA) reform. I find myself writing again with regards to the Independent Living Fund (ILF), which appears to be the Coalition Government’s latest target in its war on disabled people.
You released a statement yesterday which announced that ILF would cease to exist in 2015. Many in the disabled community saw this coming, after the Fund was frozen to new applications for this year, but had hoped that you would see reason. Your statement is difficult to criticize fully because there is so little information on your plans except for vague promises of consultation in 2011. This lack of clarity has sent ILF claimants, their carers and their friends into panic. How is it possible for us to correspond with you when you fail to clarify your intentions?
In the statement you claim that “the model of the ILF as an independent discretionary trust delivering social care is financially unsustainable.” There appears to be no justification of this claim. The purpose of the ILF was to maintain and allow for people with high care needs to remain living independently in the community rather than the alternative of residential care. Given the expense of residential care, surely making it possible for 21,000 people to live independently is financially sustainable and eminently sensible.
The statement suggests that you will move “existing users of the ILF in to a social care system based on the principles of personalised budgets.” This means that the financial burden of care for those supported by the ILF will be foisted upon local authorities, who will set their own eligibility criteria and perform their own assessments of care needs. Levels of care provided will then decrease dramatically for those formerly supported by the ILF, and for those who would have applied for ILF in the past. This will mean that many will no longer be able to live independently and have to enter residential care, at far greater cost to the state. For others it will mean that living independently is no longer possible, with the families of these people having to meet their care needs.
The Ministerial Statement is difficult to critique further because of the lack of detail. It is fair that you should issue an immediate statement providing this detail. I also demand to see the DWP’s reasoning for the claim that ILF is “financially unsustainable”, and all documentation on which this claim was based. It appears that the Coalition Government have decided to make these changes without knowing what system will replace ILF, thus making decisions which affect 21,000 lives without due care and proper planning. I wish to receive an answer that confirms or denies this. If you confirm that ILF was shut down without firm plans for the future, I suggest that you issue a personal statement apologizing to the ILF caseload for causing doubt and panic amongst them. If you deny that no plans were made, I demand a copy of this documentation be published on the DWP website.
I am sure that DWP have completed an Impact Assessment an an Equality Impact Assessment with regards to this decision, and I request that both are made available to the public. I expect a prompt and detailed reply. A copy is being sent to the Secretary of State and to my constituency MP, Hywel Williams.
Yours sincerely,
Rhydian Fôn James
cc: Hywel Williams MP (Caernarfon); The Rt. Hon. Iain Duncan Smith MP , Secretary of State for Work and Pensions
Ned's Story
My son has complex care needs and has profound learning and severe physical disabilities. As he's non verbal, I have to do this on his behalf. Part of the time he is in registered care and receives Mobility Allowance. He uses this to fund his wheelchair adapted vehicle - for hospital visits, coming back to us and social visits. Because he is officially classed as in a 'nursing home' this is one of the few benefits he is eligible for - no Income Support etc. (we've checked all this out with welfare rights). Mobility Allowance will be withdrawn from him under the governments Spending Review. At the same time, the local council has withdrawn the 'Dial a Ride' scheme for lack of funds, so he will effectively be under house arrest as a result. We've also just been told that because his existing care package is expensive it is being reviewed - it's expensive because he is very disabled - oxygen, gastrostomy, nursing care etc..
These cuts are real and affect real people, some of whom can't argue back themselves. I do my own blog at http://nedluddcarer.blogspot.
These cuts are real and affect real people, some of whom can't argue back themselves. I do my own blog at http://nedluddcarer.blogspot.
Monday, 13 December 2010
Ministerial Statement on ILF
There is a lot of fear out there over the future of ILF, which supports severely disaabled people to live independently. ILF ceases to exist after 2015 as the fund is "financially unsustainable". ILF supports 21,000 people to live independently, some of them so severely disabled that they would otherwise end up in care homes. I have friends on ILF who are in impressive and highly-[aid work - how can it make sense to remove the support allowing them to work?
The problem is that the Ministerial Statement is unclear about what happens next, promising only a consultation in 2011. The loosely related DWP press release on the new Right to Control is almost opaque, and it will take some time for people to work out what they mean. On the face of it, ILF funding will be combined with all the other pots of money for disabled people - AtW, DFG, and so forth.
The uncertainty makes it hard to know what to protest! The Broken of Britain will post a template letter to the Minister for Disabled People as soon as possible, and we will respond fully when the situation becomes clearer. For now, support The Broken of Britain petition against DLA reform http://bit.ly/fLXvUD and Write-in Campaign to Stop #DLA Reform http://bit.ly/dO7V8N
The problem is that the Ministerial Statement is unclear about what happens next, promising only a consultation in 2011. The loosely related DWP press release on the new Right to Control is almost opaque, and it will take some time for people to work out what they mean. On the face of it, ILF funding will be combined with all the other pots of money for disabled people - AtW, DFG, and so forth.
The uncertainty makes it hard to know what to protest! The Broken of Britain will post a template letter to the Minister for Disabled People as soon as possible, and we will respond fully when the situation becomes clearer. For now, support The Broken of Britain petition against DLA reform http://bit.ly/fLXvUD and Write-in Campaign to Stop #DLA Reform http://bit.ly/dO7V8N
Sam's Story
A brief background first, just so you know where I am with all this. I'm a 24 y/o guy with EDSIII, Autonomic Dysfunction, (unconfirmed) Marfan Syndrome (family history of it, I need more tests done), Anxiety and Bipolar II. All of these diagnoses came pretty quick one after the other in the space of about 18 months from July last year. I've always been one of those accident prone, clumsy, forgetful people. When I was growing up, it was always "growing pains" or "hypochondriac" but my body (from neck to lower back, chest, arms, legs, etc) is covered in scars. Although I have scars everywhere, my skin is still incredibly stretchy, soft, and smooth, like a silky bread dough. My condition has been unknown to me for most of my life, I've just had to get on with everything and struggle which made me very stubborn. However, since I hit 20/21, I've been deteriorating rapidly and haven't been able to physically fight it like I have been. Now I'm 24, I'm very close to giving up and letting it win.
My ordeal trying to get DLA has been a nightmare. Since I was 9 I've been using crutches as I had really weak ankles (dislocations) as well as a fused talus joint in my right foot. I have had virtually non-existent mobility for about 15 years, but I refuse to use a wheelchair as they cost too much for me and I don't want to be restricted further. But as it was only a "unresolved injury due to flat feet and weak ankles" there was nothing I could do. With the diagnoses I got last year, I made the jump to claim for DLA. After help from the welfare department at my district council, CAB and my doctors, even after tribunal I am only eligible for lower care, which personally I find atrocious and as though I've had dirt kicked in my face.
I have worked since I was 16, on and off for the local government and have volunteered for my local community (as well as finding time for A levels and MCAS qualifications). I have been self-employed (briefly) as a graphic designer when I was 18-20, however my health got the better of me and had to stop, as there was too much stress and I was physically getting worse. I went back to the local gov offices doing temp jobs until I finally got a permanent position with the County Council as a Pensions Officer, in the support team helping with systems administration for the department. I have been there about 2 and half years now and I like the job (although my work load had to be reduced due to my illnesses, mood fluctuations, etc) but unfortunately I'm still deteriorating (knees, back, neck and hands mainly) and I have been signed off long term sick. That's my history in brief, my EDS, AD and preliminary Marfans diagnoses were done by Prof Rodney Grahame at UCL with my Anxiety and Bipolar II, this september by Dr Bansal at the local psychiatric centre here in town (after many cancellations and referrals over the space of about 5 years).
I have been off sick now nearly half a year and obviously as my SSP ran out many moons ago (thanks to my abysmal sickness record) I have been claiming ESA. Last month, I think it was 11th October, I had a medical with ATOS. This medical was terrible, which consisted of a "doctor" sitting at a desk, tapping away slowly at a computer. She did some very strange tests to see how I can move (which, as you know from your own experiences, is extreme!) however, I was forced to perform certain things or be marked as "refusal to co-operate" this included bending at the knees and reaching above my head. Both actions caused me great discomfort (extreme pain from the knees, as they're so loose now they have no strength in them at all. As well as tachycardia from reaching thanks to AD) and when I got home, a panic attack. However, on receipt of my results, I scored 0. So even with crutches I can "comfortably walk 200m", with my anxiety and bipolar "cope with difficult and stressful situations and meeting new people", but I could go line by line through the report with how it's wrong. The sad thing is, I had already anticipated this from what I had heard previously about ATOS.
The most shocking thing I found, was when I was on the phone to DWP to ask about appealing, when I explained "I have received my ATOS medical report" the lady on the end of the phone asked for my address to send out the appeal forms without me asking for them. My current receipt of ESA is now unknown (I should be receiving it this monday, but according to the letter, it's been stopped) however, the lady on the phone at DWP said everything was still fine, so I'm confused.
I'm now at a point in time where I'll be at the Royal National Orthopaedic Hospital, Stanmore, for most of December (from 6th to 24th) with only DLA care component as my source of income as my wages have run out and I obviously can't rely on ESA. Luckily, I live with my parents still (seeing as there's a lot of things I can't do anymore, I need someone with me pretty much all the time), however, as my Dad is out of work thanks to sciatica and my mum is, like me a community volunteer (she also has to take up my portion now as well as I'm too ill) we have practically nothing as far as income as all the benefits Dad receives go toward rent and council tax (and the benefits are due to go down, if I understand things right). So we're truly stuck and all these tests and hoops I have to jump through to prove that I am ill are wearing me down. My Bipolar feels more like Major Depression as I haven't had a mania episode for a while now.
The main problem is, I'm very cynical and very sarcastic, so I tend not to let others know that things are as bad as they are and everything I say seems to be taken as a joke. This whole ordeal which has been non-stop now for as long as I can remember is making me feel completely worthless and as though I don't deserve to live in this country. I can just about cope living day to day with my problems now, I can't consider working (no matter how many times I'm told I'm "too young to stop working" like that'll magically change things) let alone have hobbies or things to enjoy and even if I did, I can't afford them now on £75.80 (or whatever it is now) a month. Luckily, I have been saving here and there, but it won't last long seeing as I have a credit card to pay off...
Sunday, 12 December 2010
Stop DLA Reform! - Campaign Resource
This is your one-stop campaign resource to fight the proposed DLA Reforms. The internet saw many disabled people and groups responding, summed up neatly at Where's the Benefit. Remember, the reforms are just proposals at the moment and we can fight them even before the consultation closes. There are estimated to be 11 million disabled people in the UK, and, if we all speak up at once, they will hear us! Here are 4 easy steps for speaking up:
Step 1 - Write to Maria Miller MP, Minister for Disabled People
Step 2 - Write to your MP
Step 3 - E-mail the Prime Minister
Step 4 - Sign the petition calling on the Minister for Disabled People to Recall the Public Consultation here.
The links take you to letter templates and petitions. Happy campaigning!
Step 1 - Write to Maria Miller MP, Minister for Disabled People
Step 2 - Write to your MP
Step 3 - E-mail the Prime Minister
Step 4 - Sign the petition calling on the Minister for Disabled People to Recall the Public Consultation here.
The links take you to letter templates and petitions. Happy campaigning!
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