I am bloody good enough, and OW!

I write this, through tears, my back screaming because though recently it has been wanting to do things that are impossible with the human spine I am currently only able to be somewhere between approx a 60- 140 degree angle. I have a thumping headache, my head is swimming, I can't even have the TV sound on because the volume is hurting too much. I am finding it a job to swallow and I have stigmata pain in both my hands. Also, for every 5 seconds or so I am getting about 4-5 twinges in my muscles/nerves.

I am scared. I am back on my crutch nearly full time when I leave the house and I am exhausted all the time, not including the level of exhausted I am when I've been out. I am now on quite a few meds and still feeling crap, I know this is only a wobble brought on by some kind of virus but it freaks me out, I want to do so many things.
Then I go online, the only place I feel I have any impact, the only place I can be equal and "normal" I come into contact with the Telegraph and The Sun (c/o political scrapbook) stories, they scare the hell out of me, they make me want to curl up and die.

They make me feel as if everything I am trying my absolute best to do is never enough, my working relentlessly while being unfit for work at finishing my OU degree, my volunteering to try to gain experience and strength etc. is all for nothing. As if nothing I will ever do will be enough in the eyes of the world at large.

I get it you know? I know; I know that some of you view me as a piece of dirt, as a scrounger. However I know better, I know that I am a human being, I know I desperately want to get better, but MS is progressive. I want to get the strength I had prior to my recent attack back but that may never happen. It has taken me years to accept this is how my life is and I still don't entirely, it doesn't really help when the rest of the world fails to accept it too.
I still feel "maybe if you just tried harder", I still feel like I should try, relentlessly for approval but I'll never get it. Maybe I should just accept that some people will always view me as workshy and a scrounger.

However, I look at this from outside and you know what I see? I see someone who has been abused, I see someone who feels as if this is what they deserve and the part of me that has studied health and diversity and social policy and a wee bit of psychology looks at the little scared me and despairs.

This is a ridiculous state of affairs! It's holocaust memorial day, a reminder of what hate of what you do not understand or tolerate can lead to, a reminder of what hateful governments can do to their own people. More than 70 years later can we still be doing this to people, segmenting into those that are deserving and "moral" and those who deficient in some way? Now people must fight to be seen as rightfully disabled, as ill enough, and morally upright citizens, and enough for "the tax payer", that we must strive so hard for recognition or are scrounging and therefore a cancer on society.

There is, after all, a thing called "National Insurance" (also, more than 70 years old, as is the NHS) people forget, that this pays for the welfare state, we pay for it, we all pay for it. we all are one, we are one people, yet somehow the government is instilling hate in the hearts of the paranoid. We are all being "taken for a ride" by these "scroungers".

You know what? Fuck it, I have rights in this country, that's why I love Britain, rights that my grandparents fought for, rights that every citizen is rightfully entitled to, and this does not have to do with justifying my right to have a meagre struggle of a bloody existence, it has to do with compassion, with understanding, with healing the sick, with supporting the poor, with legislating the private sector so that people do not have to live in squalid conditions, or are not left disabled by faulty bloody breast implants, or left without income, so that nobody should die in poverty.

It's the country I always thought I lived in, it's the country I fight to live in every, single day. Where ignorance isn't fought with ignorance, where distrust isn't fought with more distrust, and where people who already have a pretty bloody crappy lot in life are allowed to have a bit of actual dignity, not having to join the very real analogue of a workhouse just to eat, where people are provided with the help they need to go to the bloody toilet, or wash their bits!

If you do not want to live in this country, please tell me why the hell not, tell me, why, living with daily pain striving to get through (not even starting on the mental health issues), struggling to eventually get out of the benefit hole I am in of sickness and social immobility is not bloody good enough for you, do that or kindly bugger off.

A system as broken as my heart

I write this on the eve of the vote on welfare reform in the lords, I have not spent ages thinking this through or researching this so you will need to take this as it comes, I just needed to write about how upset I am.

Yesterday the first (afaik) report of its kind was published, the first report entirely researched, written, funded and distributed in by a grassroots movement of vulnerable people. The most vulnerable in society, the hardest hit, we fight not only for us; we fight for the one of the noblest of causes, we fight for social security, we fight for those who cannot stand (metaphorically) against their oppressors, against their accusers and against their government.

We published a report exposing how the government has systematically deceived the public about the consultation behind this welfare reform bill, not just mislead, but lied. They have had the inaccuracies pointed out, again and again, by people not just within the left wing on centrist media but from within their parties and from the daily mail.

This to me shows that they are actually intentionally trying to get it past the public and MPs, and that; and here's the scary bit, they know they can get away with it.
And who can blame them? Where was any reporting of this on the BBC news channel? On the BBC website? On Sky news? On Channel 4 news? Nowhere!
In fact it seemed possible at one point that channel 4 news might report it, however they seem to have completely misunderstood what the report was about. In the ruckus that ensued from that twitter message from Jon Snow as people were upset/confused/explaining what the content of the report actually was/asking questions it became too much for him and appeard to switch off from the discussion.

Just as every other form of televisual media has, we don't exist, we can just go away, if they ignore us we will scream and cry and plead with them and they think they will break us, they think they can get away with deciding what is newsworthy. A dog who "can act", and a kleptomaniac chef eclipse the publication of a report that exposes the lies that will be used to try to destroy us.

I am incensed that this has been brushed under the rug, truly I am filled with rage that something that is so obviously newsworthy has been ignored by people who say they have read it.
I say to you that you have not read it, you cannot have done if you can completely miss the entire point of it.

The system is broken, the opposition oppose nothing, the Liberal Democrats work to see us with neither liberty nor democracy, whether by design or inaction. The media are all corrupt. And tonight my heart is truly broken, the principles of social security are that we are protected by our society, we can truly no longer say that.

I really, implore you, all of you to support this cause, to try and get it out there, to show what has happened here, we try so hard every day, and because of how ill this has made them one of the main contributors has had to go to hospital, I am screaming from within that this simply isn't possible in the world I thought we lived in.
However, maybe I am actually just starting to wake up and see the world as it truly is.

"Big Society", Meager Governance and Reasonable Reform

Words, words, words, both wonderful and terrifying; I have wanted to desperately be able to write something about the BRILLIANT #spartacusreport, otherwise known as the Responsible Reform Report available at Sue Marsh's blog or also Here if the above doesn't work. It's truly something I feel passionately about, the fact that the government have not only failed to listen to us all but that they have flat out lied, saying that we have been consulted when they have ignored us, as shown in this radio interview with Sue Marsh and Maria Miller (the laughably titled "Minister for Disabled People").

Whenever we ask questions we are pointed to press releases and facts that have been shown time and time again to be false, when we try to stand up and be counted we are countered with vitriol and accusations that most are scrounging at virtually every turn, when in actual fact the figures show that the amount of fraud is tiny (a,b). We have encountered the change in language and approach by the "centrist" media who do not seem to actually represent us at all, encouraging anger towards those least able to stand up for themselves.

Through all of this many of us have felt attacked and like giving up, but some of the brilliant and tenacious among us like Sue and Kaliya saw that they needed to stand up and be heard, even in the face of considerable personal cost. Somehow they got a team together, and managed to fight the lies that people were properly consulted in this reform process. They managed to get people to rally around, write, research and produce the entire report and then fund the campaign and distribution of this report.

This is all very lovely and wonderful but it shouldn't have to be done, we should be properly consulted, our fears and questions should be properly answered and any changes necessary should be made BEFORE the introduction of these changes. Over the last year we have seen wonderful displays of communities rallying around and changing things because of the inadequacy of the system to deal with this stuff (e.g. the cleanup operation around the riots, this, and many more grassroot movements). Be under no illusion, it's great that people pull together but this is not what we should expect in a civilised society, we shouldn't have to fund our own reports into DWP lies, we shouldn't have to run our own libraries because public spending has been reduced to such a level where the system ceases to run in a reasonable manner. It is disgusting that we live in a (G8) country where people have to choose between food and fuel, commit suicide rather than face the stress and humiliation of benefit reassessment and or turn to prostitution to pay for their own education.

The idea that in some way this can be spun into a good thing literally sickens me, as does the DWP Press Office response which seemed to be just bombarding the #spartacusreport hashtag on twitter with more links to the same thing, they really cannot bear to enter into debates and instead just toe the line repeating the same thing over and over until we go away.
We were trending for almost the whole day, the print media including the Guardian and the Mail (YES the MAIL), with Boris Johnson (see mail article) opposing as well as a whole host of celebs on twitter retweeting yesterday. 
We will not go away, we will not be silenced, because we are right, because we know it and because we can't tolerate this, not just for ourselves but also on your behalf, even if you have not had to claim in the past, you may be in need in the future and should have something to support you through it!