What it is like to pretend

I hate talking about myself. Even when it comes to writing in the 'about me' sections on profiles like facebook I usually just type something like 'I don't know what to write here'. Today I think I need to write about myself, just to get something out of my system that has been bothering me.

Every single day of my life is like a childs game of make believe. I am constantly pretending. I am not doing it for me, well for the most part anyway, I do it for you.

People hate it when they ask you how you are and you reply with something other than 'oh, I am alright'. They don't want to sit there and listen to a long list of all the joints that have come out of place today, all the aches and pains and all the hideously embarassing side effects your condition has.

Real friends, they will turn around and ask 'no, really, tell me the truth about how you are'. But every aquaintence, hell even family members, do not want to know the gory details of what you are going through.

You really quickly learn when you have a disability or illness to push yourself. Push beyond what hurts, what you can't or shouldn't do. Constantly pretend things are better than they really are. Some of us are so good at it that people will question the validity of your disability or illness. Only around the people who you know really understand do you let your guard down.

I have a group of friends, we are all in the same boat. All sick and disabled. Around them I can be honest and they can be honest with me about how we all feel and how horrible things have been lately. To the rest of the world we put up a front. Every single one of these friends is currently struggling to get the benefits they need and deserve. The only one who succeeded is me. Why? Probably because we are so good at make believe that when we need to let down the walls to a stranger we can't actually do it. No one every considders this when assessing someone for benefits. No one thinks to ask 'are you pretending to be ok, putting a brave face on it?'

Even around family members we will put on a front. We don't want them to worry too much about us. We pretend things are ok. I pretended not to be in pain around my family while my teeth where gritted hard. They couldn't see why I would stay sat down and ask my husband to fetch something for me. Or why I even needed a wheelchair. I put a huge amount of effort in to tricking them into believing I was ok to the point that they stopped believing I was ill or disabled at all.

I laugh, I smile, I have a social life. On nights out where I feel some what ok I will even get up and dance. Those are the lies I tell myself. That I can still dance. That I can still sometimes do what a normal 25 year old does. I always pay for it afterwards. I need to lie to myself this way. I used to teach dancing. I used to ride horses. I used to do gymnastics and trampolining. I used to take singing lessons, dance lessons of my own. I used to be able to walk miles. Sometimes I need to pretend that I can still do these things or I might go insane.

Everything feels unfair when you are sick or disabled. It feels like you have been robbed of life, life that other people get to live. For every day you see me get up and do something like dance to one song there are 6 days you don't see me sat in bed or just sat in a chair unable to do anything else. You don't see the conesquences of our make believe. You don't see how tiring it is to us.

If you see me in the street and I am pretending to be ok. Ask me to show you my teeth that are falling appart where I have ground them whilst pretending I was ok when really I was in pain. Ask me how much it hurts. Ask me if I need a hug. Just something, anything.

It feels like the world is against us. So we pretend we are ok. But this makes the world hate us more. I always hated catch 22 situations. Now I am trapped in a huge one. So is every other sick and disabled person I know.

Correspondance on the Welfare Reform Bill - Mark Williams MP

On the 6th of June along with many others I sent an email asking my MP to not support the welfare reform bill. This is the email I sent

Dear Mr Williams MP

I write to ask that you OPPOSE the Welfare Reform Bill on this months vote.

The Bill is an attempt to scapegoat those on welfare, part of the coalition’s plans to slash £18 billion from welfare payments. The plans will also further privatise welfare delivery and result in a less generous and more punitive welfare system at a time when people need it more than ever.

There is true need within this country. Please note the FIGURE of £18 Billion is a "We will reduce regardless" figure that ignores the True and Actual Needs within this society.

I therefore on vote request that you oppose this Bill.

I myself am both sick and disabled and I will suffer greatly under the proposed changes should this bill go through. I will be forced into a job that I am unable to do and will make my health considerably worse. Fearing that the bill will be passed people have already committed suicide in this country, how many people will die should it be passed? I myself confess to feeling suicidal at the thought of being forced into work which will hospitalise me or forced into destitution. I beg of you to take a stand against this bill. Your voting record in parliament is poor, you either vote for or abstain. Please make this something that you take a stand on and say no to with a definitive voice! Abstaining from voting on this issue is not a choice as it risks so many people’s lives! I have lost my faith in the political party which you stand under, please don't make me lose my faith in you as my local representative.

S Ross

I  received this reply today from Mark Williams MP

Dear S,

Many thanks for this email, apologies for the delay in my response.

I appreciate your concerns and worries, however I am afraid I do not agree that this is the Government is making a scapegoat the poor.  It is simply doing what is necessary considering the size of the deficit and the unsustainable size of the benefits system.

The Government is seeking to update the benefit system, but will still certainly protect those who need support.  The whole benefit system was outdated and not fit for purpose, and any Government that was in control after the last election would have been irresponsible not to address that. 

It is therefore with a heavy heart that I support reforming of the current welfare system. The Lib Dems are making very difficult decisions in Government, but we are doing good work.  Indeed due to the Lib Dems influence in Government, around 900,000 people have been taken out of the income tax payment bracket.

I can assure you that I, as you do, care about the old, the sick, the disabled, the vulnerable and the needy, and will work hard to protect the people of Ceredigion as I have done as the MP for the past 6 years.

You say my voting record is poor, however there have been a number of issues I have rebelled against the Government on which I feel would go against the issues I have stood on since I became an MP.

I am willing to meet with you to discuss this matter further if you wish. If so please do get in touch.

Best wishes, Mark Williams

I have no replied to him. It is clear to me that he has done very little research on the matter and so therefore I have pointed out several pieces of research to him.

Mr Williams I have to disagree with you most vehemently that this bill does indeed scapegoat the poor. One of the predominant reasons stated for the reforms to welfare in this country is that there is a huge amount of benefit fraud but I would like to draw your attention to two graphs

http://passingnightmare.co.uk/wp-content/uploads/2011/01/fraud-graph.png

This first graph shows how money lost due to benefit fraud is tiny compared to other amounts lost. The government would do better to spend its time raising money from consolidating debts owed to it rather than making expensive changes (the implement costs far out weigh the money saved in the welfare reform bill).

http://passingnightmare.co.uk/wp-content/uploads/2011/01/fraudlevels.png

This second graph shows that a large amount of money each year is lost due to clerical error or mistakes, not due to fraud. I kept records, as have many other disabled activists, of the mentions of the word 'scrounger' in reference to the disabled and sick and I have to say I am completely disgusted. You say we are not being scapegoated but the disabled and sick are being scapegoated, made to feel as though we are all liars and that the entire burden of the countries debt is on our shoulders.

There is also the matter of whether welfare reform would be suitable at this time for our country. Many international advisory bodies have warned the current government that cuts to welfare and health services could and will irrevocably damage this country. The government has also been warned that the current rate of cuts is in fact harming our economy greatly and will push back growth by several years. Economists put this down to one factor, that the government today is trying to make cuts similar to those Canada made to its welfare and health service in 1990s but Canada made these changes while their countries economy was stable and it does not work as a model of reform to use this approach now when our country is on its knees.

More than 700,000 people with cancer will be affected by time limiting ESA, as will people with variable conditions and those with degenerative disorders like myself. This along with the recent suggestion that those who are sick and disabled should work for less than minimum wage because they are 'less able and less capable of the same level of work' means that people who are already struggling to survive will be pushed into work that not only damages their health and well being but also into jobs which cannot ever cover the cost of living let alone living with a disability. In and of itself the statement that the disabled are capable of less is insulting to many disabled people as although our bodies may be broken a vast majority of us are intelligent and forthright people, many of us have higher level honours degrees and the only thing wrong with us is we have the misfortune of ill health or a condition which limits our capabilities physically, this does not make us worth less nor does it make us stupid. We are devalued at every turn and attitudes such as this make it harder for those of us who wish to gain employment to do so as employers also have this very same attitude that disabled people are worth less than someone who is able bodied and this attitude pervades the entirety of society. Evidence of this is the massive increase in disability hate crime, spurred on by the devaluing of the disabled and sick and given force by the scapegoating of them with phrases such as 'scrounger'.

A better and more major way for the government to save money on benefits would be to scrap ATOS. ATOS have been found incompetent at every turn but instead of being dropped they are being given a further contract and more power and control. If you care to just browse some sites online such as Broken of Britain then you will see how many people have had bad experiences with ATOS, people have in fact died as a result of ATOS's bad system and bad judgements and others have committed suicide due to the pressure they felt going to a tribunal. More than 50% of ATOS decisions are overthrown which is an alarming rate, why would the government continue to employ a contractor with such a poor record of success? They do not weed out those who are fraudulent but upset and distress those who are genuinely ill and genuinely disabled. Their WCA is intrusive, embarrassing and inaccurate. It expects those with illnesses and disabilities to fall neatly into boxes but the very nature of being human means that everything affects people differently. The welfare reform bill gives more power to ATOS and with every disability, mental health and health charity in the country asking the government to get rid of them how can you agree to give them more power by supporting the welfare reform bill?

The current system is indeed inadequate but there are better ways to change the system than the welfare reform bill suggests. People who are disabled and sick are often living below the poverty line. I myself received food parcel this week because I could not afford to purchase any food and yet I am still better off than many people who are sick and disabled. There has been little or no consultation with those who this bill will most affect and any consultation has largely been ignored, various advisory bodies have also been ignored in the process of formulating this bill. Again I ask you, how can you support a bill that is so poorly researched, poorly thought out and poorly structured. The far reaching consequences of the bill have not been considered or if they have then I can only assume that there is a fundamental lack of understanding in the current government of what it is to live in the real world and live on the poverty line and what a change could do to those who do live this way. There are better ways to reform benefits, a peoples consultation has taken place which has many better and more well thought out and researched ideas than the current welfare reform bill, please read it http://diaryofabenefitscrounger.blogspot.com/2011/05/welfare-for-people-by-people.html

The predominant problem with the bill is its lack of consideration for the changes it will affect to those who are sick and disabled in regard to their health and well being. Health and well-being are fundamental human rights. I would also like to point our several other human rights which this bill will affect:

1. The right to participate in society - Loss of benefits will lead to many disabled and sick people becoming house bound, unable to leave or do anything other than sit at home. If you have never spent weeks on end at home staring at the same four walls I suggest you don't try it, it is like torture, but many will be expected to live this way.

2. The right to access employment - Rather than making employment easier to access for those who are sick and disabled the welfare reform bill will make it vastly more difficult because of the culture of malcontent surrounding its implementation and also because they will find it increasingly difficult to access assistance to work due to those services being cut (assistance once offered at Job Centres for finding work, keeping in work, flexible working advice and setting up a home business is now being cut or has already been cut)

3.The right ti live without discrimination - The welfare reform bill as it has made its way through parliament has increased hate crime against the sick and disabled, the government itself has used phrases which are discriminatory and has allowed newspapers to use defamatory language about sick and disabled people completely unchecked!

This welfare reform bill is more than just a vehicle to push more vulnerable sick and disabled people into poverty it is a vehicle for human rights violations on a major scale. Particularly when we considder the changes to ESA (time limiting and the poor research that has been released - a first year law student could have produced better) or the change from DLA (a system that predominantly works well) to PIP - an ill conceived and ill thought out system. I have more information on human rights violations here http://thebrokenophelia.blogspot.com/2011/06/human-rights-eu-and-un-and-violations.html

I am sorry that you are still supporting the welfare reform bill but I hope that you can see my points and arguments as to why it will be detrimental.

S Ross

We will see what kind of response I get this time.

Anyone else write to their MP asking them to oppose the welfare reform bill? If so, have you had any response from them? I would be interested to know if anyone has had positive feedback too, are we making dents yet?

Human Rights EU and UN and violations

It is incredibly difficult to talk about the subject of human rights for me without becoming righteous or indignant. Human Rights is something I firmly believe in, that all people have rights which should make sure they are afforded equal living and equal opportunities, that no one is oppressed or hurt needlessly. I believe we have a right to be protected and to be looked after, to be seen as equal, have freedom of speech and be free from threat or harm. I believe in the principles set out in the UN charter and the EU convention of human rights. There can be found here and here. We also hear a lot about the Geneva Convention, a subsection of the charter of human rights specifically relating to the practices of war.

Mostly we are unaware of what our rights are specifically, we take these rights for granted because for the most part in the UK our governments have upheld these rules and we have been treated fairly as people. However, when these rights are compromised we need to educate ourselves as to what our rights are and defend them. Currently the UK government has been told that it is not conforming to the UN charter of human rights on the points specifically relating to disability. The main points can be found here and these are:

• The right to not be discriminated against
• The right to an education
• Right to employment
• Right to health
• The right to equal and fair justice
• The right to participate in culture and life

For the absolute full list of rights please see this list here. I want to focus on the first and last points I have shown. Firstly that we have the right to live without discrimination. George Osbourne shortly after the ConDem government came into power stood in parliament and said that all people on benefits where scroungers and that there would be strict reform on benefits for the disabled and sick as too many people where claiming these falsely and that benefit fraud was highest in regard to the benefits associated with the disabled and sick. In actual fact this is utter tripe, the actual money lost through real benefit fraud makes up just a tiny fraction of the amount of money the government loses each year. This Graph shows that the majority of 'fraud' is in fact mistakes either by the DWP or by applicants and just 20% is actual benefit fraud. Another Graph shows that just a tiny amount of money each year is lost because of benefit fraud. Compared to some of the other figures the £1.1 bil lost through benefit fraud is almost negligible yet those on benefits are being demonised and are suffering the largest cuts, shouldering the burden of an imaginary deficit.

So to support their arguement that the unemployed and the sick and disabled should shoulder a sickening amount of cuts the government publicises certain cases of fraud to newspapers and releases information only to certain newspapers who will write supporting stories. As you can see in this article (also the source of the graphs) the headlines are inciting, aimed to get people riled up and angry at people claiming benefits.

The reality is what the government has done is opened the flood gates on disability discrimination in this country. It has become normal and acceptable to just assume that anyone who is disabled is also a liar or to assume that because someone has a fluctuating condition and is currently well they are somehow lying about the other 50-90% of the time when they are so ill they are house bound. The governments planned policy changes have advocated disability discrimination and as such disability discrimination has taken a sharp rise, many more people are having a problem with it and lets face it, being sick and disabled wasn't easy street to begin with.


Now lets look at the right to participate in culture and to a life. The government under the UN conventions is supposed to do its best to remove obstacles and difficulties which prevent disabled and sick people from exercising this right. There are two things that the government is changing which will make exercising this right practically impossible for many disabled and sick people in the UK.

Time limiting ESA is currently in the impact assessment stage and the so called impact assessment research is ridiculous. You can read the report here (courtesy of Sue Marsh). They seem to think that time limiting ESA to one year wont impact:

• Health and well being
• The justice system
• Human rights

Now time limiting ESA is certain going to affect sick and disabled people in regard to their human rights. They will lose the ability and therefore the right to participate in culture and life as they are suddenly kicked from ESA onto the new universal credit and made to take a work placement which will potentially make their illnesses worse or be dangerous due to their disabilities. People are going to become entrenched and house bound. Simply put people will become trapped by an unsolvable circumstance. The ATOS system of assessment already fails 50% of the time as 50% of appeals are won and this is set to continue as ATOS isn't set to change. This however is the tip of the iceberg. As we know ESA is split and awarded into two seperate categories; The work related activity group and the supported group. Those in the work related activity group are the most at risk under these proposals as they are considered essentially fit to work despite the fact that realistically these people probably should not be working the majority of the time. 

DLA the other support for those with disabilities and long term illnesses is also going to be changed to the PIP payment which will be more difficult and harder than DLA for people to access as the guidelines will be increasingly strict. This again will rely on ATOS and their flawed WCA tests. So with less sick and disabled people able to access the benefits which afford them the right to live life and access culture how exactly is the government following any code of human rights or helping to protect the most vulnerable members of society?

It does get worse...Currently bills going through parliament include one to withdraw from the EU conventions of human rights. We are about to lose some of the laws which protect our basic rights. Fight for these rights, lobby MPs, write to newspapers. Do something! We all have to. Our human rights are already being abused by the current government, don't allow them to get rid of them altogether. You can access the bill here. Please help me and many others who have no voice in taking a stand on your rights and the rights of everyone in this country, lets make the government listen and lets make them at least stick to allowing us the basic human rights afforded to us!

Tales of disability discrimination

Life is unfair for those with a disability. It can feel like we are badgered on all sides. Our bodies rebel against us, won't do what we say, won't be normal. The government attacks funding and benefits we need to cover the costs of our illnesses, the very money we rely on to survive. Then there are those who judge us for being disabled, for being less able or for having an illness, for being less than perfect.

Later on this week I plan to talk about human rights, specifically the human rights which apply to the disabled and long term sick. I thought to start my week of talking about human rights I would focus on one specific point.

The Right to not be discriminated against

In the current political climate you would think that it was fine to openly discriminate against those who are sick and disabled, the government does it and if they do something that makes it legal and acceptable, or so most people would think. Hearing other stories from other spoonies and disabled people there are two sides. Sometimes disability discrimination is dealt with well, swiftly and efficiently and treated as the serious matter it is. Then there are the times that it is just ignored, that a blind eye is turned to it. I want to give you an example from both extremes from my own life.

An example of the good

Last summer my parents where visiting me and along with my husband we where all looking for somewhere to eat out together. I should explain first that the town I live in has a very strict no drinking zone enforced on the streets within the town centre. This is partly to do with the large student population for half of the year and the large tourist population for the rest of it. Between May and October the police patrol most heavily for people who are drinking on the streets and if you are caught it is either an £800 on the spot fine or an immediate official police caution. As we where walking to find a place to eat I could hear a crowd of men behind us screaming and shouting loudly. It was tourist season, tourists are often loud and drunk and you either get used to it or you don't live here. These men pushed past us nearly knocking me out of my wheelchair. It was annoying but I spent most of my years as student in my wheelchair and I am used to it being knocked by drunk people so again another thing that didn't really bother me that much. I did however see one of the men had a half empty pint of beer in his hand and a police car had not long gone past us round the one way system. This is the conversation that followed:

Me: Hey mate! Put your pint under your coat in your hand or the police will fine you, just hide it!
Him: F*** off, dumb disabled b****, if your so f***ing clever then get up and walk, f*** you four wheels.

I had tried to give him a friendly warning and not only got an earful back but an earful of discrimination. The guy went past us on his way to the train station which is also a pub. He went into the pub at the train station and we continued on to the corner. My parents where disgusted and I was shaking but refusing to cry. My husband told me to ring the local police number which I did and the police very quickly appeared. I was astounded by how quick and how controlled the response was. I had informed the police that the man was also drinking on the street and that he had gone towards the train station. I gave them a description of the man and two officers disappeared while a community support officer stayed with me. One of the two officers came back and began to take a statement from me. As I was giving my statement I noticed a police van pull up outside the train station and several officers get out and they proceded to search the pub at the train station and the platform. I was later informed that an officer on the platform realised that the man they where looking for was on the train as it was pulling out. The train pulled out and was swiftly called back by station staff (being a single line with train passing points all the trains have walkietalkies and all staff have company mobiles) and the police boarded the train from all exits and the man was swiftly, relatively quietly, and efficiently apprehended under the discrimination act. Not only did he spend the last day of his holiday in a police cell rather than on a train home he also got to appear in front of magistrates the next day and recieved a nice and hefty fine.

An example of the bad

I live in social housing, in a ground floor flat. This flat is sound proofed as much as possible and even has sound proofing ceiling paper in all of the rooms. When we first moved in our upstairs neighbours where perfectly nice. The would be sociable and friendly and when we had barbeques outside they would join us. One night as we where discusing benefits they informed us how they where cheating the benefit system and how we could to and explained exactly how they where doing it. I was shocked as was my husband and we both told them that we would rather be honest. This is where things began to change. First it was a night I had friends over and we where sat in our yard and our neighbour decided to insult one of my friends. Next incident our washing line 'myseriously blew over' at the same moment our neighbours where having an arguement outside. My husband and I then went away on holiday for a couple of days as my parents had paid for us to go with them. We had a pet sitter in who rang us in distress one night because our neighbours had threatened to kill her because of 'flies in the house' that where our fault. Now where I live is in a small village outside a town, even the town is rural so the village is even more so. We also live in a small hollow in the land which makes us slightly lower down and a stream runs at the end of the road. This is all perfect for attracting midges and the midges where apparently entirely our fault. We thought nothing of it and calmed the pet sitter down and came home when we where due to and it all seemed fine. Then the neighbour began to complain that we used the doors in our house too much, she even suggested that we remove all of the doors. It was ridiculous and unreasonable. All the doors to the rooms we use in our house are moved twice a day, once in the morning to open them, once in the evening to close them. Twice a day was us using doors too much.

You may be wondering how this is a story about discrimination, I am getting to it. The threats began before christmas. 22nd december to be precise. The neighbour came and knocked at the door and my husband answered. She complained again until I appeared out of the living room door way to see what was going on, at which point I was called a 'disabled b****' and told that there would be consequences. I told her that she was noisy too and that if they wanted us to be quieter she would have to also be quieter as it wasn't fair for only one flat to put in effort while the other still had parties so loud you could hear the lyrics to the music playing (and I wouldn't have minded but it was 3am and I don't like take that but at least it wasn't a song I completely hated by them, I could sing along as it was the song that is from Stardust the film). She then threatened me again and made to come through the front door past my husband who stopped her by closing the door on her. Since then there have been several incidents of threats including one where she stood outside our front door kicking it screaming that she was going to kill 'that disabled b****' causing dents on our door, she even had a car running with someone waiting in it for her. The police have been informed of every incident and the housing association ASB officer also has been informed.

You would think this being discrimination, anti social behaviour and threatening behaviour that something would have been done right? Wrong, nothing has been done. There is supposedly never enough evidence to do anything at all. The most we get is her in a cell for the night. The night she was outside with a knife she ran and the police didn't catch her, it took a week for them to arrest her despite the fact she spent the week after that night sat outside the house spreading lies about me and my husband loudly so we could hear while we where too afraid to leave the house to stop her. I am still afraid to go out now and have what I call my alarm grenade on me at all times (simply pull the pin out and drop the alarm then run if you can). We have door and window alarms now and we have a cctv camera sat waiting to be fitted but we don't have the skills to do it ourselves. I am deathly afraid of this woman and no one has helped me. She has descriminated against me, lied about me, threatened me and nothing has been done.

Every day discrimination

 So those are the examples of the two extremes but there is a whole lot in the middle too. Frequently I am treated like my brain doesn't work just because I am in a wheelchair. From people who talk loudly and slowly at me to people who hand the money back to my husband and address my husband even if it is me who handed them the money and me who is replying. There are those people who stare at you repeatedly when they see you are in a wheelchair or on a walking stick. There are those people who refuse to believe you are disabled, an example in my case is when I use my stick to get out of my wheelchair to get into a taxi or go somewhere I can't in my wheelchair because I can walk short distances - people have actually screamed cheat and fraud and scrounger at me before in the street when seeing me do this because they assume that your legs have to be completely unusable for you to be in a chair rather than you can't walk a long way so you need one. There are hundreds of thousands of small little wrongs done to those who are disabled every day which are discriminatory and we wont be able to stop people from doing these things big or small unless we call them on it every single time. Now the guy from the first story probably doesn't like disabled people any more than he did when he was nasty to me but at least he learnt a lesson, that discrimination is not acceptable, ever.

The UN are the ones who say we have the right to live without discrimination as disabled and sick people but the only people who can enforce this really is us, the people who feel that discrimination day in and day out. Our lives are one big fight when you're disabled or sick so just make sure you win!

A reply to Poverty Cooking and Swearing Against Disableism (Diary of a Benefit Scrounger)

Sue Marsh: it has taken me until today to write a comment on this. You had me full on wailing and in tears yesterday. I wish I could show this and your previous post and have my brother read and understand them. Let me explain myself.

I am the youngest of five children. In my Family it goes girl boy girl boy girl. We have both parents still together and we where brought up in an incredibly liberal household to the point where my Dad actually ran for local councillor as a Liberal Democrat and the local Mayor who was a great family friend and always at our house was also a Lib Dem. Now the eldest of my brothers is now a Tory. He grew up in the thatcher era and he agrees with so many tory principles.

Since I was very young I had problems with my joints, I had many dislocations. Earlier this year I was finally diagnosed with a rare type of hyper-mobility which is considdered very severe and degenerative. It took until I was unable to walk unassisted and was mostly in a wheel chair to get this diagnosis. I am also over weight because I have PCOS and even after dieting for a year when I was 17 on less than 100 calories a day I did not lose weight (I in fact gained 8st that year). I also suffer from M.E. and have some kind of immune system problem which means I pick up viruses and infections easily but the doctors don't know what it is. I have been seeing consultants and doctors for various years and have finally started to get answers as to what is wrong with me.

Having a disability is incredibly difficult as you appreciate yourself. Any kind of illness is difficult when it is long term. My doctors have advised that I don't work despite the fact that I want to and thus I am stuck at home every day bored out my mind with a degree I can't use.

My brother has torn my entire family in two to the point where both my sisters look down on me and I am not allowed to see any of my nieces or nephews. This is because my brother refuses to acknowledge the fact that I am disabled or sick at all. My brothers oppinion is that I am fat and lazy and that is entirely the only things wrong with me. My own brother actually sent a message to my husband on facebook bad mouthing me and saying that I am lazy and fat, not ill and just stealing and scrounging from the government.

This same brother knew I had tried to start a business from home, he knew I struggled to finish my degree, he knows that I have been ill for years and have done my best to fight against it. But because newspapers and the PM say that people who are disabled are scroungers and steal money then I must be. And because some people fake disabilities he assumes that I must too even though the evidence to the contrary is right in front of him every time he sees me. He seems to think we are rolling in tax payers money, that we are some how really rich off the money he earns. He doesn't realise just how dire things are. He sees that every now and then my Dad just gives me £100 but he doesn't realise this is because we haven't eaten for two days because the bills went up again and we couldn't afford them and food or we helped out a friend who was worse off. My Dad is a catholic and he is happy to give me £100 every now and then because he knows that even if I have nothing I will still be helping other people to the best of my ability with it. My brother doesn't understand why I got £150 'for a meal out' for my birthday from my parents because that was a meal out and two weeks worth of shopping and my parents understood that it would make things vastly easier for us.

He also thinks that I am lying when I say that I am being victimised by my upstairs neighbours because of my disability. He has never lived in a council house and thus been trapped because he owes the housing association money and there is no where else for you to live. He is able to get a mortgage and buy a house and I cannot and he also thinks that council houses are like nice little communities where everyone gets on and its an idyl paid for by tax payers. He wasn't here all the times the police where here because my neighbour threatened to kill me and tried to kick my door down while holding a knife with a get away car running and waiting for her. He wasn't there when the police said they couldn't help us and he doesn't understand when I say I am too afraid to go out side. He thinks I am being lazy.

Despite having so much right in front of him showing him my disability he refuses to believe that I am anything other than a scrounger who lives in a tax paid for idyl. He has disowned me, cut me from his life and wont even let me send birthday cards to my nephews and nieces. I cannot change his mind, even if I show him your articles because he will think you are a liar too with an imaginary disease even though you are not. He can't see what is infront of him. People like him are blind and it makes me so sad, even my own brother who was brought up liberal refuses to see how desperate my life is, how desperate life is for everyone who is disabled. He thinks we live in palaces watching sky tv, kickig our heels back eating caviar paid for by him working. Nothing can change anyones mind about this but this is reality for us, we are looked down on for being disabled every day, even by people who should know better.

It has broken my heart. You share the reality of what we go through but it feels like we are all banging our heads against brick walls because no one is listening or they turn their heads, the ones who are blind do anyway. I want to kick and scream and cry because half of my own family hate me because they can't see the truth. Even if I show them the truth written by you Sue it wouldn't make a blind bit of difference. Ignorance has always made me sad, especially what I call 'willful ignorance' and so many people with wrong views about the disabled of this country are willfully ignorant, they choose to have an incorrect view even if they are proven wrong time and time and time again, even if their opinions are proven invalid.

Thank you for making me cry, it was cathartic to realise I can't do anything to change my brother. Maybe some day he will change his mind and we can but try to make other people see the truth but they will see it when they are ready to see it.

Antiquated ideas in parliament and out of touch ministers

Is it just me or does parliament seem to be filled with ministers who have antiquated ideas and are completely out of touch with reality in every way? I can give you two really good examples of this:

Case One: Maria Miller; Minister for disabilities.

Repeatedly it has been pointed out by several organisations that this minister refuses to interact or listen to people who actually have disabilities in this country. There is now a petition and campaign to get a vote of no confidence against her which can be found here on facebook. She has systematically failed to understand the needs of disabled people in the UK and has also failed to act to protect disabled peoples interests. You would think that as her job is to make sure the disabled of the country get a fair deal that she would have opposed some of the cuts to disability benefits and support; she didn't. She also did not attend the hardest hit march which took place earlier this month in London. If anyone was responsible for ensuring it got such a small amount of coverage as it did get it will have been her, she could have just helped get the march more coverage but even this is beyond her capabilities. The predominant complain of those who are disabled in the UK right now is that ATOS, the people who assess your capability for work whilst on benefits, have an unfair system. The only thing I have heard Ms Miller say on the subject can be found in this blog here. Frankly her opinion on that matter is insulting to everyone and in my opinion just shows how out of touch with not just public opinions but also with facts she is.

Case Two: Ken Clarke; Minister for Justice

Today Ken Clarke out did himself on the matter of antiquated views and ideas by making it plain that he doesn't considder some rapes to be 'serious rapes'. I mean come on! How is a violation of a woman's body never serious? Its more than ridiculous to even insinuate that any case of rape or even sexual harassment is less than a serious matter to be taken will all seriousness, As a woman I find it incredibly frightening that the man in charge of the justice system in this country could have such a poor grasp of the effects a rape or sexual assault has on a woman's life. His opinions seem more in line with those ideas still held by much of Britian that somehow a woman who is raped asked for it or deserved it some way either by wearing skimpy clothes or by being intoxicated. Rape Charities frequently remind us that even if sex has already begun and a woman changes her mind if the act continues that is rape. It shows a frightening lack of comprehension and also a massive lack of respect for women, The person who discusses the Ken Clarke issue best is Laurie Penny on the New Statesman blog here and best expresses the outrage at his comments from a feminist point of view.

But seriously these are the people we have entrusted with the laws and policy making in this country? These people with dusty antiquated views who are so out of touch with reality that it almost beggars belief. They have a fundamental lack of understanding of the common people. It frightens me a great deal that the fate of so many lie in hands such as these.

A confusion of consultation and change

Can anyone work out what this mysterious e-mail I received is about? I couldn't at first until I realised that it was a request for me to appear before a select committee to give evidence about the changes being made to ESA. Now when I first agreed to give evidence should it be needed I provided my phone number and made it explicitly clear that I would prefer to be called to be informed than to be e-mailed. So why did I recieve an e-mail?

The primary conclusion I came to, seeing as I first got the e-mail two days after the date given on the e-mail, was that the request was little more than a farce. They are asking people to make statements or give evidence but they don't really want to hear it. It supports the governments possition if those called to give evidence don't show up - we are scroungers who can't be bothered rather than being genuinely ill people. Had I gotten the e-mail on time I still would not have been able to attend as I have a disability and particularly a wheelchair which means that moving around the country is incredibly difficult for me and requires a great deal of forward planning. I do not have my own transport and therefore am at the mercy of the public transport system so therefore I have to book tickets at least a week in advance to ensure I can book assistance/ramps at the right stations.

There is also the cost of getting to London. Being on benefits limits how often you can travel because you are limited by what you can afford. I can't afford to buy a last minute ticket to London for any reason. This would cost me nearly £250 return for me and that's not including my husband who is my carer.

If this is the way the consultation periods for benefits reform are being run then no wonder the cuts are being approved, no one with an invested interest in them can get there to oppose them. This means that important services for those who are disabled and sick but want to work are being lost and also means that support and funding for those who are sick and disabled and cannot work is being drastically cut. The services I have lost to date are the want to work scheme, the disability work support team and a joint support venture between the job centre and the NHS called the condition management team. All of these services are invaluable and gave fantastic support to me and many others who wanted to return to normal work or start their own businesses. All of these services have been lost in my area due to cuts and badly run consultations.

I currently have a fantastic advisor at the job centre who has tried their best to help me. His job is to advise those in the work related activity group on ESA and also as a disability advisor for those who want to work. I worry that his job will be entirely cut and that there will be no support what so ever for those who are disabled. This advisor being disabled himself understands the needs and peculiarities of peoples disabilities better than anyone else possibly could but he is also at risk of losing his own work in the face of hefty cuts.

Cuts are dangerous for a variety of reasons. Firstly those who are mentally ill or suffer from conditions such as Aspergers who find change distressing will be faced with a myriad of confusing and difficult to understand cuts. Letters and forms from the DWP are already difficult enough to navigate and understand so you can imagine the confusion that will be caused by the new reforms. They are also dangerous to those who are vulnerable to the degree that they rely completely upon carers. Cuts to DLA, ESA and Carers Allowance will mean a threefold cut to these peoples lives putting their health and lives at risk. There is also the involvement of ATOS, the government sanctioned doctors. A lot has already been said about the inefficiency of ATOS and how most appeals against their decisions are successful. The level at which they deem people fit for work is ridiculous. There is also the threat of compulsory community work for those on any kind of benefit. In the initial plans for this the government said that it would be across the board and without exception. There are people who are so beyond the capability to work that it would be ridiculous to expect them to do community service activities for their benefits. If they do not though their money will be withdrawn and these people will die. It is a ridiculous idea and completely unworkable. If they do decide that certain people are exempt how will they be deciding this, where do they draw the line?

Now for a little bit of opinion. As a disabled UK citizen I feel more than neglected by the ConDem government. I feel victimised. I feel like they have decided who is useful to society and who is not and drawn a line and those not on the good side they will let suffer. I honest to God feel like the government is trying to kill me and anyone else who has a disability. I would be surprised if I was the only disabled person in the UK feeling this way. Being disabled in the UK right now is bewildering and frightening. The people who are already some of the most vulnerable in society are about to become even more vulnerable and it seems that the government refuses to hear our voice between ensuring poor publicity for disability rights marches and poorly run consultations we have pretty much no voice. Others are speaking up and now I will join them because there are those disabled who can't speak up for themselves, its up to those who can to speak for all of us before its too late.