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OK Theresa and Jeremy and Tim and Nicola and Leanne and all the other pavement walking, door knocking, Manifesto-pledging Parliamentary candidates currently pounding our Nations’ streets, I have some questions for you. And, as a disabled person, I’m pretty sure there are many others from my community who have questions for you too. Why are you not speaking to us? Don’t we count? Don’t our votes matter to you? I hope not.

What I want to know, exactly, is what the political big-wigs and hard-hitters and movers and shakers in this country can offer to us? What promises can you give to all of us. What promises or pledges will you make to us? According to all the statistics I have been able to find, there are around 12-13 million disabled people in this country, what are you going to do to our lives any better for us? Are you totally disregarding the collective power and magnitude of disabled people’s votes and the votes of our families and friends? I hope not. Do you really think you can continue to either demonise us or watch others doing the demonising without us noticing? I hope not. Are you going to continue putting our needs to the back of the queue? I hope not. Are you going to go on ignoring us? I hope not.

Well, here are my questions at any rate.

We are told that Social care in this country is in crisis. That there is not enough money to pay home-carers and unpaid carers a decent wage or benefit that reflects what they do to support and enable us. What are you going to do about it? We are the net users of that care, what are you planning on doing to alleviate the situation and ensure that we get the care we want and need to allow us to live our lives to the full?

What are you going to do?

Many of us need to use aids and adaptations in our daily lives such as hoists and wheelchairs and hearing aids and aids for people with visual impairments. What are you going to do so that we can all get the best equipment we need to live without having to fight for every nut, bolt, screw, , plug, cable and electronic component?

What are you going to do?

Then there is the constant battle to find a home, a place to live which can cater for our access needs and accommodate us properly and in comfort. It’s often one of the greatest obstacles we face but one where we appear to get little or no help in getting what we need. What are you going to do to ensure that there are houses and flats and bungalows available which allow us to live in the community with our families, alongside our friends and neighbours without having to fight for funding for alterations and adaptations?

What are you going to do?

How are you proposing that your party will ensure that disabled children and young people can receive the education they need and deserve alongside their non-disabled compatriots? How are you going to try to ensure that they can all study together and not be segregated due to an impairment meaning the school or college is physically inaccessible for all?

What are you going to do?

Everyone falls sick at some point in their lifetime, what are you going to do to ensure that everyone can access the healthcare we all need and not find it being rationed according to how much we need it and how expensive it is? How are you going to give us access to the doctors and specialists and the nursing professionals we need in our hospitals? Are you going to ensure that these professionals receive salaries that reflect their skills and dedication? Are you going to make sure that they have working conditions such as hours and breaks that allow them to do their jobs to the best of their ability and not want to leave?

What are you going to do.

Then there the employment thing. We are told that everyone must work and get a job. What are you going to do to ensure that disabled people who can work get the support they need to do so safely and successfully and that those that can’t work due to their impairments are not demonised and punished for daring to be sick and disabled. Many of us would like to have the opportunity to do something, however small, what are you going to do to help us? How are you going to promote disability in the workplace so that those of us who can work and want to work get the support we need and the opportunity to do so?

What are you going to do?

Talk to us and tell us how you are going to help and support us. Why should we vote for you and your party as opposed to the other parties and their candidates? What are you going to do that will make a difference for us? Don’t write off 13 million potential voters. Please talk to us and tell us what you’re going to do to help us. If you want my vote give me a reason to put my cross next to your name on the ballot paper. What difference are you going to make to my life? Why should I vote for you, please tell me.

What are you going to do?

What is it about being a disabled person which means that everyone seems to think they have a right to know every grisly detail about your life? What is it about having a wheelchair that make you suddenly become public property?

I have not always been a disabled person, I used to be, what is laughingly called, ‘normal’. That’s how I grew up, but, when I was in my mid twenties, everything changed. I became ill and was diagnosed with an incurable and degenerating condition. Not my fault, not what I wanted, not what I was expecting, not my life plan, but it happened and there was nothing much I could do about it except to deal with it and carry on. Life is, after all, for living, whatever hand you have been dealt and however hard it seems to be. Plans change, situations change, everything can change. Nothing ever happens the way you expect so you just have to adapt and do the best you can with what you have. After all, you only get one go at life, what you have is not a rehersal, so, in my opinion, you have no option but to make the most of it and have fun, whatever happens.

But how much fun can you have when the world’s never-ending contingent of poke-noses come along? Sure, when you are diagnosed with a lifelong condition you can expect to be prodded, probed, questioned and cross examined by the medical profession, that is, after all, part of their job but then there is everyone else. All the other people that want to know everything.

There’s the people who decide if you are going to get all the equipment you need, such a wheelchair or a hoist. What do you need them for? How often are you going to need them? When do you expect to be cured? How heavy are you? We just need to weigh you. And, how tall are you? Are you sure? You look taller. We just need to measure you. And what’s your waist measurement? How wide is your bottom? Do you know how long your thighs are from knee to hip? I’ll just get my tape measure. Non-stop but seemingly justifiable questions. They’re fine – annoying but fine. 

Then there are the people who decide if you are going to receive any financial help from the State. They send you forms which include page after page of questions which need a written response and documentary proof if you have it. How does your impairment affect you on a daily basis? Are you able to get washed and dressed on your own? Can you brush your hair? How about your teeth, do you deal with brushing them yourself? Can you manage your own medication? Do you cook your own meals or does someone else have to come in to help you? Can you eat without help? How about using the toilet or having shower, can you manage to do that? Again, legitimate questions, but it’s still not nice. When you are disabled you really should focus on the things you can still do, not the things you can’t. If you focus on those things, the way all the legitimate questions make you do, then it is just so depressing and soul-destroying. You start to wonder what the point of carrying on is and whether you are just a burden. Not healthy.

But, at least there’s a point, of sorts, for all of those questions, money equipment, treatment, all bearable and understandable. No, the questions I’m talking about, the questions you really don’t need are the questions you get from random passers by. The taxi-drivers who ask “So, what’s wrong with you?”, the busy-bodies who seem to think it’s their right to know. Well, it isn’t.

When you’re waiting at the bus-stop in your wheelchair, you don’t expect to be asked by a small child how you use a toilet. You don’t expect to be quizzed by a teenager about whether you can still have inter-course. You don’t need to be challenged by a pensioner about your finances and told you are a scrounger. And you really don’t need to be interrogated by someone you’ve never met before on why you haven’t killed yourself yet. What are you supposed to say to that one? I’m a bit busy to do it today? Not this week thanks? Maybe next month? 

What is it that makes people think it’s they have the right to ask me personal, intrusive questions if they are not a specialist or a professional? Well, in my opinion, it isn’t. Not everyone has the right to ask me anything. Sure, the medics do and the Welfare Benefits assessor does and the Social Care Provider does and the disability equipment specialists do but that’s it. No-one else need to know anything at all about me at all unless I choose to tell them. I have just the same right to privacy as a non-disabled person. What is it about being disabled that makes me public property? If you’re not in the need-to-know category I would urge you to consider once again what right you have to know intimate things about my impairment, my business, my private life. Before you ask me that burning question, ask yourself if you would like to be asked the same thing and if you really have a right to ask me. Once you’ve done that, if your answer is that you wouldn’t and you don’t, then stop, swallow it and walk away. It’s none of your business and I probably won’t like it either.

Sticky-beaks and poke-noses would you just butt out and leave me alone, I’ve had enough.

Oh goody!

Such fun!

The amazingly incompetent DWP strikes again!

Brief bit of background info – I am currently in the process of being transferred from the Disability Living Allowance I have been receiving since 1998 onto the new Personal Independence Payment. Around six weeks ago a kind and long-suffering friend helped me complete the frighteningly lengthy claim form, in excruciating detail, which I then returned, complete with copies of my Social Services and District Nurses Care Plans as evidence that I was not tell lies or over-egging the situation and my needs.

Well, yesterday I received a letter saying they were coming to see me to do a home visit and check that I really am as disabled as I said that I am and that I am really in need the help I say that I do.

Great!

No real problem with a personal visit and assessment except for the fact that it will be a colossal waste of both their, and my time.

First of all the appointment is for 9am-11am. Well, that’s not convenient. My carers come at 9.30am to wake me up, wash me down, attend to all my personal care needs, get me ready for the day and provide me with my breakfast. The assessor will just have to wait in the kitchen whilst I get my full body wash, have my catheter bag emptied and my incontinence pad changed. I’m not having them in my room to watch any of that.    

Secondly, my carers are here for around an hour for my morning visit, and can’t change their times as the have several other clients to see, so the assessor really will have to wait in the kitchen until they have finished everything they have to do.

Thirdly, in order to ensure that the assessors don’t, themselves, lie in their report ,about what they ask me and what I say to them (there are too many reports of this happening with other disabled people for me to take the risk), I will be recording the whole thing. The DWP allow this, if you inform them in advance that this is what will be happening, but it needs to be recorded on a double cassette or CD recorder so that I can keep one one copy and that they can take the other with them. No digital recording on a computer, tablet or laptop, no dictaphones, nothing modern, just an old fashioned cassette or cd recorder. Now, how many people still have one of those?

Not me.

Why am I going to have to go through this indignity yet again anyway? I fully understand the need to ensure that Welfare Benefits are going to the people that are actually entitled to them and need them. But really. Can’t the people at ATOS Healthcare read? I sent copies of my Care Plans for a reason – as proof that I am genuinely disabled. Are my Social Worker and my District Nurses really going to spend time detailing all the help I need if I didn’t actually need it? Is my Local Authority really going to be spending an inordinate amount for carers to come in to do everything for me on a daily basis or no reason? Somehow, I don’t think so.

The pen-pushing jobs-worths in the DWP need to learn to read and start employing some common sense, if, of course, they know what common-sense is. Disabled people, with genuine, documentary evidence of their impairments and the help they need just to exist, should not be hounded, day after day, to prove every little thing, in front of witnesses. It’s not right and it should not be happening. I am an emotionally strong woman but, even I am beginning to feel dispirited and depressed by the constant badgering. For other people all this disbelief and hounding and assessing and justifying themselves can be, and often is, the straw that broke the camel’s back.  

Employ some sense DWP, I beg you. If you ask us to send you medical evidence which proves our claims when we make them, do us the courtesy of actually reading the evidence we send you. You are looking for fraudulent claims so you can stop spending the taxpayer’s money on claims made by people who are not entitled to Welfare Benefits, so stop wasting our money going after people who really should and need to be getting that help and can prove it. What is this country coming to?

As I’ve said before, only this week, would you please just leave me alone. I, and so many other disabled people, have had enough. Learn to read and start checking the evidence you ask us to provide. Doctors and Consultants, social workers, District Nurses, Medical Professionals, don’t write these reports for their own amusement, they write them for a reason. Do them, and us, the courtesy of reading what these reports say and then start going after the reall fraudsters instead of us.

We’ve had enough.    

I think I’m supposed to be grateful.

I think all of us disabled, and older people are supposed to say ‘Thank you’ to the Chancellor, Philip Hammond, for his much flaunted, much hyped boost of £2bn for Social Care in yesterday’s Spring Budget.

Well then.

Here goes…

Thank you Mr Hammond, you are so beneficent and generous.

Sure, £2bn is an awful lot of money, and, with any luck it, at least some of should help ease the Care Crisis we currently have in this country, but it can only help if it actually filters down to the people it’s supposed to be helping. My major concern is that it will be shared out amongst all the Social Services Departments, nationwide, and will just vanish into their usual, annual Social Care black hole. We, the older and disabled people who are the ones who are supposed to reap the benefit will probably get to see little, if any, of it at all.

As someone who is in receipt of Social Care, there I three places I can think of straight off where that £2bn could make a real difference if it was spent properly.

First of all, I would like to see the money being put towards ending the farce of the fifteen minute care-call. How can anyone in their right mind think that fifteen minutes is long enough to provide any form of meaningful care for a disabled or older person? It’s barely long enough to make a sandwich or boil a kettle for a cup of tea, let alone help a frail person access the toilet, get them dressed or undressed, make sure they’re comfortable and safe, cook a light meal and help them eat it, if they need help, make a bed and do a little light housework.

Some of Mr Hammond’s £2bn definitely needs to go towards this.

Secondly, the paltry amount Home Care workers get paid needs to be addressed.

When I was in receipt of Agency Care, via my Local Authority, the workers were receiving little more than the minimum wage, indeed, in some instances it seemed as if they were even getting less than that. I now get my care through a scheme called ‘Direct Payments’ whereby my Local Authority pays the amount they would have spent on Agency Care directly to me and I get to employ and pay for my own carers. In theory, this is a great plan and, for many, it works well but it is impossible to offer a decent wage for the work that needs to be done and therefore, get the most suitable carers. The amount I get, for example, allows me to offer an hourly rate of just £9.40, before tax and NI, hardly a fortune, especially when you consider the level of personal care I am expecting those workers to undertake.  I would dearly like to be able to offer more but, as someone with no private income whatsoever to fall back on apart from my Welfare Benefits, I am stuck with just the funding my Social Services Department allows me every month for my long-suffering and excellent carers. Hardly enough at all.

Some of Mr Hammond’s £2bn needs to go towards this.

Then thirdly, there’s something which doesn’t affect me personally as yet. The amount that is available for both short, and long-term, residential Care Home accommodation. How can we expect older and disabled people to receive good quality, dedicated care when they need intesive care or can no longer live in their own home, if the amount Residential Homes are given for each resident’s care package is so small? We can’t

Some of Mr Hammond’s £2bn needs to go towards this.

What I really want to see most after yesterday’s display of Governmental generosity would be a completely new Care Strategy for our country. There needs to be meaningful consultation with the Care providers, the medical profession and carers themselves, both Home Care and Care Home agencies and workers and the Care Recipients, namely all the older and disabled people who need help to live in comfort and with dignity. We need to be assured that any extra or new funding is being spent wisely and well and is contributing towards the wellbeing of those who need it most.  

Some of Mr Hammond’s £2bn definitely needs to go towards this.

I want a job.

I really want a job.

The Government would be so happy if I could come off benefits and get a job.

I would be so happy if I could come off benefits and get  job.

There is only one impediment to this laudable ambition of theirs, and mine – I am severely disabled and stuck in bed most of the time, so, I am not able to go out to work, the work would have to come to me.

And this, apparently, is a major and seemingly insurmountable stumbling block.

But why? What’s the problem? Why can’t the work come to me? In this wonderfully technological day and age, with computers, video conferencing, telephone conferencing, Sype, the internet and even that strange new invention called the telephone, why do I have to go to a specific location, such as an office, city, or even country, in order to work? Is it really necessary for me to leave my home at all?

To be honest, that, as far as I am concerned anyway, is so last century. The experience I have and the roles I am qualified and extremely familiar with in a workplace can easily be done without having to move location at all. I am happy to admit that there are many, many jobs where the employee does have to be in a specific building or town or workplace in order to do what they are trained to do, such as a doctor, a bus driver, a postman, a prison officer, a supermarket cashier, a chef but, equally, there are many, many  roles which can be done from just about anywhere and no-one would know any difference.

Take me, for example. I, like many people, have the transferable skills which would allow me to be able to work, in my chosen profession, from anywhere. I’m not anything special or important or awe-inspiring, I have around twenty-five years experience in providing advice and information, on a variety of subjects, to disabled and older people. I did, or do this, by phone, email or in the form of advice leaflets, information sheets, magazines and current awareness bulletins which I have written, edited and published for national and regional organisations and charities in my area. And that’s it. That’s me. That’s what I do. But for some reason, all the employers who are looking for people who can do what I do, would want me to travel to them to do it.

Why?

In my last paid employment I was taking details of clients’ legal problems and booking them an appointment for a telephone advice session with a lawyer. Either that, or referring them elsewhere that may be more suitable for their needs or sending them an information leaflet that would, hopefully, answer their question. Nothing more complicated than that. So, what was there  which meant I had to travel to the other side of London on a noisy, smelly, crowded bus every day at crack-of-stupid in the morning and then fight my way back home again on the same buses, exhaused and frustrated in the evening? I have no idea. I could have done the exactly the same thing from the comfort of my living room and no-one would have been able to tell unless I felt the need to let them know.

And I’m not just guessing, I know this, from personal experience. At one point during my employment with the company I had to have an operation, which necessitated a lengthy recovery period. Essentially, my brain and abilities were unaffected, I just had to be careful and wait for the wound to heal and for the stitches to be removed. That was it. I wasn’t sick, just incapacitated. So, I had to stay home. And I was so bored and so fed up and I felt so useless. In desperation, I had a chat with my boss and, because he was forward thinking and had also had problems finding someone who could cover for me whilst I recuperated, we implemented a system whereby my office phone was linked to my home phone and the client database and advice rota were linked to my home computer and bingo, I could  continue with my work, uninterrupted. If someone rang in I would take the details of the issue, make notes about their case on our system, check the availability of our legal professionals and book an appointment for the client to get the advice they needed. Not only that, but I was able to undertake research for advice leaflets, write articles for the magazines I was responsible for and send the copy to the printer for publication and distribution. And, I didn’t have to move a muscle.

So why do we still have this preoccupation with having to work from somewhere special? Surely, having employees who work from home is beneficial to both employees and employers alike. Employees can work for anyone, anywhere, and so, can look for the job that is best for them, regardless, without having to move and the employer doesn’t have to pay for premises or heating or lighting or equipment for an expensive office building. Just make sure that employees have the things they may need to be able to work from home such as a computer, internet access and a phone line. Not only that, but they can employ anyone, from anywhere. They can employ the best possible person for the job regardless of where they are.     

It doesn’t sound too complicated to me.

I feel that we need to have a complete rethink about work and what work actually means in this country. We are in the technologically advanced, twenty-first century, not still stuck in the Victorian or Edwardian era. Why can’t employers, next time someone resigns or retires and leaves their business, look at the tasks that need to be done and really consider whether those tasks have to be done from an expensive office or if they can be undertaken by someone working remotely, from their own home? Adverts could be placed online, interviews could conducted by conference call and work could be done from anywhere. Bosses could check work is being done by looking at output and not by staring across their desk at  someone sitting at another desk on the other side of the room. Workers could feel trusted and valued. No-one needs to actually go or be anywhere. Happy employers, happy employees. What’s so bad about that? Telephonists answering the phone in their PJs? What’s the issue? The phone is being ansered regardless. Why not try it and see what happens?

Oh, and, if there are any amazing employers reading this, who would be happy to take a risk and employ a remote Advice and Information Officer, hiya! I’m here and waiting for your call!

Come on Bosses, take a step into the twenty-first century, be brave and go for it, you know it makes sense!

I’ve just read yet another outraged post about women who breastfeed in public. And yet again, the main thrust of the argument being spouted against it is that it’s disgusting and should be banned, especially when it is done in public, particularly in a cafe of restaurant.

Why?

What’s wrong with it? I’ve seen some truly disgusting things in restaurants such as people who lick their knives, people who chew with their mouth open and people who talk with their mouth full and spray half chewed food and spittle everywhere. Can we ban these people too please?

What does everyone who goes to cafe do when they get there? Have a drink! Eat! Why should a baby be any different? We all need to have regular meals, why should a baby be any different. And the idea that a breastfeeding woman should go to the toilet and feed their baby there – really? Would the people who say that like to eat their dinner sitting on the toilet? No? I thought not, no-one would. If you bottle-fed your baby you have to make sure things are sterilised and clean so you don’t introduce harmful bacteria into the baby’s system yet breastfeeding Mums are often being asked to go to the toilet and fed their child there. Disgusting. What is wrong with people in this country. If the sight of a woman doing something perfectly natural like breastfeeding offends you and disgusts you so much there try this for an idea – look the other way.

I think another report I saw this morning gets right to the nub of the issue. This second report was about a politician in the USA who said that if a woman got out her breasts in public to feed her child then he has the right to grope her. What we have here is a man, and yes, the politician in question was a man, seeing a woman’s breasts as his own personal play thing. Well they aren’t. They have a purpose which is not to entertain and titillate. They have developed and evolved over millennia as a way to nourish the next generation. Breasts are not a sex toy.

And then there was a third report I saw this evening, on the same subject, which angered and upset me more than the other two reports combined.

This report was about a woman who has been sentenced to seven years imprisonment for breastfeeding in public. Seven years. How warped is that? A woman who followed her natural instinct to nourish and nurture her child is being incarcerated for doing so. Granted, there is probably a lot more to the story than has been reported in the press, it may even be a spoof but, even so, if it is true, is imprisonment really a proportionate response? Just the thought that such a story could be given any credance at all is wrong, just the idea that such a story could be written at all says something about the nation where it reportedly happened. Let’s not forget, we’re talking about a country where a young man who sexually abused a young woman, physically assaulted her and left her, battered, bruised and bloodied, behind  rubbish bin in an alley, served just three months of a six month sentence before being released and yet, allegedly, a woman whose crime was to breastfeds her child in public supposedly gets seven years? How can this ever be seen as right. Surely, it can’t. There has to be something seriously wrong with a legal system which could, at least, allow this to happen or which even sees the idea of it happening as right.

The issue of breastfeeding, and breastfeeding in public, is something we all really need to examine again and have a proper, reasoned and rational debate about. There must be a solution that can satisfy everyone. I have to say that one idea I have seen was in the cafe of a well-known Swedish furniture store. There was a special area set aside that had comfy seats, bean bags, tables, armchairs and screens for the use of those people who wanted to breastfeed or bottle feed their child. In my opinion, what a good idea. Granted, not all cafes and restaurants are big enough to have a whole section set aside for breastfeeding Mums but surely, in most places, it must be possible to have a table or tables in a secluded corner where breast-feeding can take place in peace and quiet without anyone complaining. People who don’t like to see babies being fed would know not to sit there and breastfeeding Mums would not feel excluded and isolated. Not only that, but small children, whose presence often annoys other, adult diners, would be able to play and make a mess whilst their parents eat, without upseing anyone else.

We all really need to have a rational and reasonable discussion, find a solution which suits everyone and not stigmatise women doing something perfectly natural as disgusting and wrong. Women who breastfeed are not exposing themselves or flaunting their sexuality, they are simply nourishing their child. That’s all. Nothing more.

And, if you really are someone who really doesn’t like it, I have a simple solution for you – don’t look.

Yesterday, there was an article in one of the more respected daily newspapers which stated that a survey in America had identified six medical conditions which had been rated, by hospitalised patients, as worse than death.

Really?

Worse than death?

Had any of the respondents to the survey actually experienced any of these conditions long term so they could make an informed decision or were they just guessing? Almost certainly not. I think that most people were, in fact, guessing.

I took a look at the list and, of the six conditions listed, I have experienced four of them and have lived with two on a daily basis for several years. Let me tell you guys, I reckon death would be far worse. Sure, these conditions are all things that can make life harder, a lot harder, but death would definitely be worse.

Death is not something you can learn to live with.

Death is not something you can get better from.

With death, you don’t get another try.

Death is the very end.

Finito.

I think the major problem we have here is fear. Fear of the unknown. For a start, all the people who took part in the survey were hospital in-patients. They were all people who were probably scared and worried and ill. According to the article, they were people with long-term conditions such as malignant cancer and heart failure. These were people who were scared and frightened by what was already happening to them, then they were given a list of other conditions and asked if a diagnosis with any of these would tip them over the edge. These people were sick and at a cross-roads, they were presented with a list of nasties and asked if they had a choice between them and death which would they chose.

Well, that’s not fair.

In those circumstances it is hardly surprising that death won. These people would have heard of all of these conditions, and may even know others who have experienced them, but they would have already been scared so asking a question like this, at that time, was wrong. Sure, the conditions listed are horrible and, for someone with no prior experience of a long-term, life changing medical condition, scarey, but, if these conditions are well managed and people receive proper treatment and care, there is not nearly as much to be scared of as you might think. Having to deal with any of the conditions listed can be difficult and, in some instances, unpleasant but, in my opinion, death would be worse. Furthermore, as this survey was conducted in the USA where people don’t have access to free, NHS care and participants would have to pay for treatment and care, this could have coloured their responses. Taking that into account however, of the six listed there is only one, ‘being confused all the time’ which actually would scare me. Even then, I’m still not sure if I would chose death as the way out. The others are, as far as I am concerned, all copable with. In fact, I have friends and acquaintances who do cope with them on a daily basis and they all have rounded and fulfilling lives. They are not sitting back longing for the Grim Reaper to call, they are out having fun and enjoying themselves.

I think this article is another attempt at promoting the thorny issue of Assisted Suicide. Running a story about what happens in another country is not right unless it emphasises the fact that it is another country and that things are different there. I’m not saying that people don’t have a right to choose, they do, but they need to know death is not the only choice available and what the situation is here. Sure, people should be able to go for the death option if that’s what they really want but they need to be given full, accurate information about other options available to them so they can make an informed choice and that doesn’t always happen and it should.

I hope that the newspaper in question runs another story about Britain in what happens here but I’m not expecting miracles. Balanced reporting would be nice for once but it probably won’t happen.