I started to write about the Compass conference at the weekend which, frankly, was an unmitigated disaster from start to finish. If it could go wrong, it went wrong and I was just so sick I barely knew my own name. The one silver lining was the actual seminar on welfare itself which was triumphant. The "most interesting welfare debate ever, surely?" seemed to be the consensus.
I was interrupted this morning by a doctor's appointment, where, yet again, I have been sent home to bed, my laptop is to be confiscated and I have to rest on pain of a hospital admission on Thursday if I don't improve.
I've had 7 weeks now of a crohn's flare that screwed up my immune system, which led to a virus, which turned into a chest infection. If I don't get better, pneumonia is just a blink away.
And all I really wanted to say before I am exiled to a world without even my cyber friends, is that this is why politicians do what they do. And they do it because we let them.
The last few months have taught me that welfare is the murkiest department of all. Crammed with hard-liners, right-wingers, hang-em-an-whip-em, scrounger-crushing, hawks. There has only been one narrative for about 30 years - "How do we stop paying people who are sick?" This has been based on just one assumption - that we're all the man Ed Miliband met with a gammy leg who could be doing something else. Or we're dying of cancer. There's nothing in between.
I don't exist in their ignorant model of disability - or many other people's, Compass taught me that - and should any of us get beyond our station and dare to fight them, dare to speak out and try to make people see, they can be pretty confident that the fight will kill us before anyone's really noticed. Lets not forget the thousands who are so profoundly disabled they don't even know what is being done in their name - they can't argue back can they? An easy target for welfare-psycopaths. (definition : "the inability to form human attachment and an abnormal lack of empathy, masked by an ability to appear outwardly normal.")
I am disgusted by my country - that's the truth of it. Disgusted at what passes for parliamentary research, disgusted that lives can be sacrificed on "assumptions", disgusted with the Machiavellian power struggles that dull even the brightest political stars, disgusted with the arrogance of politicians who never bother to respond, disgusted with a media who choose to look the other way.
But most of all I'm disgusted with myself. Because however hard I try, however determined I am, however much I want to do this, it's killing me. My stupid, useless body just can't keep up with my perfectly capable brain. However I try to coerce it, or pamper it or persuade it, it just won't play the game. Those politicians who are so convinced that we can all just pick up our beds and walk might want to spend a week with me for living proof of someone trying to do just that. They might want to see what it's doing to my life, to my family and friends who get more frightened for me by the day.
But daily I become more convinced that there isn't a scrap of evidence in the world that will make these politicians think again. No statistics, no facts and figures, nothing. It doesn't matter how damning the studies, how wrong we can prove that they are, they just plough on regardless, supremely confident that hurting us is a price worth paying. They know what they want to do and they're just going to do it regardless. It's OK, sick and disabled people have no union, they can't strike, they have no powerful friends or glamorous celebrities. They're too tired or sick or disabled to fight, so don't lose any sleep over them.
Don't want to put disabled access into your 4 star central London, newly refurbished hotel? That's OK, we won't complain. Don't want to actually find us work we could do? That's OK, no-one will ask where you fell through the cracks.
And I'll leave you with this. Anyone reading this who thinks I'm just being a bit dramatic might want to think about the bits I don't write about. The real stories behind all of this that would just make me sound like a screaming conspiracist. The "just between me and you" conversations about politicians or spin doctors that I can't repeat or share. Frankly, my ears are bleeding and I wish I didn't know about any of the sordid, astonishing mess.
As Kaliya concluded in her session at the conference. "We have a choice. We can do this. We can push these reforms through and change the very nature of how we treat the most vulnerable in our society. We can follow the path of 1930s work programmes, institutions and eugenics once deemed acceptable both here and in the US, Canada, Japan and elsewhere and we can turn our backs. We can decide that the sick and disabled have little rights to basic dignity.
Or, we can open our eyes, start to listen, and think NOW, together about the kind of society we want to live in."
But we do have to think now. Because very soon it will be too late. And I think I can assure you that politicians of all parties are going to go for the first option. As a society, we have to start to look behind the scrounger wall they are building around us and decide if abandoning us is a price worth paying.
**I'm told it is bad form to be too pushy, to ask for your support too often, but screw pushy. Before I go off to bed, will you just RT this please? Post it on your Facebook walls, send it to your friends, or your MP. Tell people. Tell them we need their help. Thanks.
Retweeted! Will retweet again to help get the message out there whilst you're unable to blog. All the best and hope you feel better soon :)ReplyDelete
Another good piece, and congratulations on getting the message out at the weekend, no matter everything you met along the way seeming to conspire against you.ReplyDelete
Now go take care of yourself so you'll be back to do more of them when you're up to it again!
Have shared! :)ReplyDelete
Excellent piece am so with you!ReplyDelete
I know how much writing this has cost you personally. Thank you for your courage and dignity. I hope you find the rest you need.ReplyDelete
I will certainly ensure your work is highlighted.
Now, rest awhile - take the time to be gentle with yourself - you are a person too! Take Care, and every best wish. Adrian
Sue .. Do take care and obey your body. What you say is absolutely true and this fight must also be taken up by the able-bodied.ReplyDelete
Have shared. Hope you are able to blog again soon.ReplyDelete
Hang in there sweetie. Thanks once again for what you did for us all this weekend. Time to rest now, and leave it in our hands for a bit, we're with you. xxxReplyDelete
I agree with everything you say sue and sorry that you had to remove my post yesterday as it was out of order.ReplyDelete
only you know the contents there could be changes ahead of that event and only time will tell but we can live in hope
So sorry to hear your so unwell i am very upset to hear that as you have done more then anyone could possibly hope for and am sending big hug's your way and will be thinking of you
as always my very warmest regards to you all
Please look after yourself and please be kind to your body... it is not a stupid useless body, it is doing it's best to sustain you against all odds...it needs some love and care and rest. Please don't be disgusted at yourself. You are brilliant.ReplyDelete
If we start castigating ouselves we become as bad as those we are opposing who want to castigate us for being sick.
Rest and heal.
sending love xxxx
Hi Sue. Hope you get a decent rest. However awful you were feeling on Saturday, it didn't affect your seminar presentation, which was terrific.ReplyDelete
And "most interesting welfare debate ever, surely?" is about right. Veterans of this sort of event are attuned to the signals that tell you whether a seminar is working- whether people are engaged, whether it's changing people's thinking. Nobody left that room without having learnt something important they didn't know beforehand.
I'm just sorry you and Kaliya both paid such a heavy price for this. As for the hawks- well, if I were a hawk, I'd have been pretty worried by what I was hearing at that session, especially from you two. What gets welfare hawks worried isn't welfare doves with charts and spreadsheets, it's people affected by their policies who are articulate, passionate and informed and know how to get the realities of their situation across to an audience.
Thanks, again, for an incredible contribution against all the odds.
Definitely RT'd - thank you Sue for having the chutzpah and bloody mindedness to fight the system, even though your personal system is fighting you. Bless you, hun - and take care xxxReplyDelete
shared, you speak for the many voiceless, those on lifes margins, who daily recieve lifes bitterest pills. Thank you, I agree with you 100percent. regards.ReplyDelete
Sue, Another great post, although i seem to be getting the "were finished" feel. How do we fight back that will change people's minds about disabled people. The present Govt and the one before do not care so we have to show them that they should care just because we are not well enough to do a 40hr or a 3hr week we still have feelings of dread everyday regarding not fully contributing to society or helping our partners or children with every day tasks that non disabled people take for granted. Unless and dare i say it take the Greek stance on this then we will be finished and our lives that are already in turmoil will be even more shattered. We need a leader someone who will take the cause to the streets regardless of the consequences. This is only my own view but i know there are countless people who feel the same we are angry and scared.ReplyDelete
black triangle website its worth a lookReplyDelete
Thank you so much for all you do; I, like lots of other people who struggle with the day to day getting to loo, trying eat and drink are full of admiration that you can fight the corner for the rest of us when you both are struggling with health everyday.ReplyDelete
All those tiny bits of engery we can spare do add up to alot,we may not have alot to fight with but we do it with 110% passion. hope your laptop is locked away!
Sue, I am sorry that you are not doing to well at the moment and rest will do you good. It seems our fears have been realised no one cares and no one will ever care unless they or someone they know becomes disabled, its a sorry state of that i'm sure. You mention the sordid mess it was never going to be easy. i think the extreme will prevail here and by that i mean the deaths of people but even then i fear it wont be enough. I for one hate and despise this country but it is better than others. Take good care of yourself Sue. Plan B that is what's needed nowReplyDelete
I hardly know what to say.. have been following you & bendy girl for over a year now & have followed you over the weekend.. i unsubscribed from twitter after the virtual disabled protest in march because i feel so afraid.. i WILL be joining again..
I'm not at all surprised at what you both went through but have found myself in tears a good few times, epsecially when i read that kaliya had fallen out of her chair & now i can hear your exhaustion & other feelings... tears again...
I will never come to terms with the limits of my body & brain but with some financial stability (IB & DLA) I had stopped punishing it..don't forget that part of the reason we are becoming angry or disgusted with our bodies is because we are so afraid.. WE KNOW we CANNOT magic away our illness & disabilty & so we are very frightened, even more terrified of our disabilities because they may very well be all we are left with!
We cannot say ok you've caught us we'll tow the line now... That's the whole point! & you & kaliya mean so much to us for showing this...
I know there are impossible lines for you to constantly consider about how many spoons you can use & when & i've felt afraid for you & kaliya all w/e.. please rest & save your disgust for wherever it truly belongs...
I love your 'M'lud won't you save me..' song & look forward to you returning here with your profound clarity & wicked sense of humour &..
Please, please be careful with yourself & your spoons...
Very best wishes :)
Again & again I thank you Sue for all that you do & say for us. You're awesome but please, pay attention to your body & rest now. The fight can wait just for a few days whilst you recover.
I retired from 35 years of teaching today. As a grandmother of a Crohns sufferer, as a socialist and as a human being, I was moved by your articulate and righteous anger. I am adding this on facebook, but please tell me what else I can do to get involved in this fight. I still have energy and you are welcome to some of email@example.comReplyDelete
Please take some time to rest and put yourself first. You are nothing but an inspiration and godsend for sick & disabled people everywhere.ReplyDelete
Sue Marsh for PM!
This is the first post I have read from your blog - it was RT'd by Arthritis Care. Every word you say is true and not overly dramatic at all. I will be RTing and sending to my friends on Facebook.ReplyDelete
Take care x
I watched the film Milk this morning. We need to be like Harvey Milk and speak up for our rights. I'm so glad you posted this. I'm with you all the way.ReplyDelete
Thanks Sue for everything that you are doing. Please take care of yourself, and try to rest. You, Kaliya, and the Broken of Britain gang have helped me to find a little bit of hope in this situation. We are right here with you.ReplyDelete
Unfortunately, I know a lot of disabled people, and hardly any have any real idea about the reforms that are coming our way, and many also don't want to believe when I give them facts about what is already happening.ReplyDelete
Until people begin to experience it, only then sadly will the reality hit, and by then, for many it will be too late to change anything. All we can do is keep talking about what is happening to those who is going to directly affect.
I never fail to be impressed by your excellent writing cross posted amongst the voices of the left. We are all thinking of you at this time. I hope that rest will do you the world of good and you will catch up with us again in the future.ReplyDelete
Dear Sue - I'm so sorry to hear that this last while of campaigning and then the London trip have taken so very much out of you. I hope that you will manage to rest and recuperate properly - that the rest and recuperation will work properly, I mean. You work so hard on our behalf and it is, truly, appreciated. I'll share this and ask people to share it on and to speak up.ReplyDelete
Love and healing to you - and the very gentlest of hugs,
It's my first time visiting your blog and I'm trying to come up with a way to send support in the form of a comment.ReplyDelete
I understand your disgust, your anger and your frustration. A lot of us are feeling this way right now. But we are fighting.
I wish you health and strength and a peaceful recovery.
(Incidentally, the american author Derrick Jensen also suffers from crohn's disease and he writes about it. Maybe it's worth checking him out?)
Your courage is inspirational.ReplyDelete
Love and support
why are you not telling all!!!!!, Sue. Surely as people who follow your blog and support you through thick and thin then we have the right to know thr full story.ReplyDelete
Don't give up the fight, we're all with you Sue.ReplyDelete
These B******ds haven't beaten us yet!
There is a long way to go but in the end good will triumph I'm sure...
That is the most inspirational comments I heard in a long time rest and get some me time I for one will copy and post this to my MP and to the PM @10downingst.gov if there is such an email addyReplyDelete
we can fight them in every way possible to us at our disposal, the web, radio phone ins, letters to papers, demos but most of all tell your family and friends, tell them exactly what is going on and then tell your mp in the most forthright manner like i did. i tell you what i told my mp a labour member by the way that they've lost any chance of me, my family and friends ever voting for them again and my family and friends tell their friends and relatives. remember word of mouth is a powerful tool. on another note i was speaking to a welfare rights worker this morning and she told me about an esa tribunal she attended which she won for the client. it turns out the atos so called "health prfessional" is in fact an aromatherapist, that's right an aromatherapist. what next witch doctors, i suppose a dose of nicely fragranced oils are going to cure the paralysed, bring a psychotic episode to an end or cure aids, eh!just wait until i see my mp i can't wait to hit her with this nugget.ReplyDelete
I said it before and i will say it again.ReplyDelete
WE need a leader someone who will take the fight back to them, we cant rely on friends, family mp's radio's media no more. we need to act now get some plan set in stone then fight
Maybe you could use reality TV for good instead of semi-evil and invite a Tory to live a week in your situation? It might be hard to get the levels of pain and stomach problems right, but I'm sure scientists can manage.ReplyDelete
Its about all of us Vanilla, sue just highlighting her own case. we are all in this together!! Sorry for that peopleReplyDelete
Am sharing. You're an inspiration.ReplyDelete
Sue is right, the cause needs someone high profile to take the lead before anyone will listen. We need a Bob Geldof or Johanna Lumley. Anyone know any celebs?ReplyDelete
High profile person someone who really knows the needs of the disabled, shouldn't that be the disabled minister forgot her name at the moment it will come back to me soon i'm sureReplyDelete
Well said, again!ReplyDelete
Hope this, on the same topic, helps too:
We can't reiterate all this enough times. Repeat, repeat until someone listens....
We need to organise better in order to get our views across, A manager of mine once said if someone tells you no Steve it can't be done, just ask why 5 times then you will get what you want. Lets get our heads together and brainstorm to see where were at.ReplyDelete
Anne Begg was elected as the Labour MP for Aberdeen South to the House of Commons on 1st May 1997, the first permanent wheelchair user ever to be elected to Parliament.ReplyDelete
Her political interests are wide but include welfare reform, pensions, equality and broadcasting as well as issues which affect her constituency. She was also active in the debate to allow embryonic stem cell research
well Anne should by rights be the main person helping us as she is fully disabled in her chair
However she has not done much for us if anything and cant reply to any letter or email so in my book she's not a lot of good and going deaf I'm told yes deaf to our plight how wonderful
Fourbanks, I agree to some extent about Ann Begg, but i fear it would be detrimental to our cause because she works and that is what the Govt are saying your disability should not hinder you, if you get my meaningReplyDelete
Well, I'm supposed to be AWOL, but in reply to request for info on private conversations, of course I can't write about them, but inevitably they will influence my writing ;)ReplyDelete
As for Anne Begg, she is the one MP who contacted me almost immediately, gave me her private contact details and helps me every step of the way. I hope she won't mind me saying, but credit where it's due etc.
If we have any allies at all, she is one.
Declan, thank you so much, your comment gave me and Kali fresh strength. We've read it over lots of times since the weekend every time we felt desperate :)
Sue, get back to bedReplyDelete
Thanks sue for letting me know about Anne i myself try to remain completely neutral and try to find out what mp's stand for on issue's such as welfare what they truly believe in as opposed to just trying to be friendly and say what they think i would like to hearReplyDelete
At least you have contact with her which is a darn sight more then I've achieved
zimmie - lol! OK, OK, I'm going *pokes out tongue*ReplyDelete
Fourbanks, I agree to some extent about Ann Begg, but i fear it would be detrimental to our cause because she works and that is what the Govt are saying your disability should not hinder you, if you get my meaning[/QUOTE]
I do get your meaning my take on Anne is she is very lightweight in a very extreme heavyweight area of politics and i could run rings round her and more to the point she's a piece of cake for David Cameron no match whatsoever so therefore extremely unlikely to be able to put together a half way house compromise on behalf of the sick and disabled
Yes its great that Ann Begg supports us but how mant more willingly show it, without upsetting the party. My own keeps repeating the same old rhetoric without standing up and being counted. Mind you he is labour. I for one want positive action not pussyfooting around with these people who it may never affect.ReplyDelete
I would like to suggest and if its ok with you Sue a war council if you likeReplyDelete
one further thing Anne has full support in help and expense in getting to work at the tax payers expense and should not be confused with any other disabled person in the UKReplyDelete
one further thing Anne has full support in help and expense in getting to work at the tax payers expense and should not be confused with any other disabled person in the UK.ReplyDelete
Confused by your comment
I said it before and I will say again, I will fight as long as you do. I am broken and falling appart too, so many of us are, but we fight on regardless. If only people could realise how brave we are and how difficult this can be when you are ill and disabled and falling appart.ReplyDelete
Make sure you rest though Sue. If your body says enough you have to yield to it a little ^_^ take care of yourself x
I guess war council scared you all off perhaps it was a tad to strong, What i really meant was a council who totally agree with everything that the Govt want, now thats a better option isn't it!!ReplyDelete
One last comment before the pills kick in and send me off to dreamland.ReplyDelete
We every single one of us who is going to be shafted by the reforms have but one single chance to put up a fight, we are all tired, in pain angry, and confused so lets stop talking formulate a plan and get it on with the GOVT. My story is like the countless others who have or will be shit on by ATOS,DWP,GOVT and lets not forgot those hard done by MP'S. Come on people
Well there’s the Big Society Breakfast on the 30 June could be worth watching on TV or even joining in!ReplyDelete
Someone high profile who seems to understand.ReplyDelete
Just telling it like I saw it!And everyone I've spoken to since Compass agrees it was a great session. It's a shame the planned webcast of the seminar fell through- it would have been nice if your readers who couldn't make it could have seen your presentations, but the technology let us down. Talk soon I hope. But if you're reading this, you probably shouldn't be.... Best
Retweeted. I also tell every single person I meet and wrote to my MP, will write again and again. Willing to fight as long as it takes!ReplyDelete
Hope the flare quiets down a little very soon and that that pneumonia possibility goes away asap...
I know how you feel but you are doing a wonderful job. I did my archival research assignment for my MSc on the British Library digital archives and your blog. It is there for generations of historians and social scientists to read about the "truth"...the narrative of those at the sharp end. I think your blog will have more influence in the long term than all the govt stats that a school child could see through...Bless you xxxxxReplyDelete
Andy Worthington Author & journalist is fighting hard on our sideReplyDelete
Thank you sue for all your hard work and courage, I support you in all you do and will put your post up on my blog.ReplyDelete
If I can help out in the future just give me the nod.
Have a rest now.
@Fourbanks: Your criticisms of Anne Begg aren't entirely fair. She's obviously doing a lot for us in her role in the Work and Pensions committee, which unfortunately doesn't get a lot of attention. Just in the past month or so the committee have put Grayling on the spot over demonising us and she challenged Maria Miller over the same in the House. Neither admitted any blame, but name another MP who has bothered to do the same....ReplyDelete
Point taken David she is doing her best i agree with that but she needs to assert herself more and use some different words like what lord sugar would use like outrageous / disgraceful/ when speaking in the committee meetings so they hit home on IDS/GraylingReplyDelete
Anne Begg didn't even know what the independent tier was, I sent her info but as yet have not had a reply.ReplyDelete
I'm sick and tired of all the crass assumptions about people who have to live on, sorry survive on benefits, going by the bloody media anyone would think where eating caviar and drinking Dom champagne?
My last blog dissapeared because I spoke out against Atos, I'm really angry, I've come back with another blog and am in the process of doing a name & shame register of Atos HCPs, anyone who has an assessment get the assessors name and centre details, send them to me and I'll publicise it, let the HCPs know how it feels to be under scrutiny.
I'll keep everyone informed of when the register is up.
Yes the likes of atos can be extreme I'm barred from going anywhere near them so i could be classed as luckyReplyDelete
And your doing a grand job BTW paul
Atos & DWP are the enemy that are destroying the lives of seriously disabled/sick people, I hate them.ReplyDelete
Hopefully in the next few days I'll have the register/website up and running.
Thanks for your kind comments Fourbanks.
your welcome PaulReplyDelete
Many ask how do we make politicians and others fully understand what illness, sickness and incapacity truly feels like. How about five glasses of sea water followed by a bottle of laxative than both legs broken like in the “Wicker man” than a trip to a dungeon on the rack and a hot poker followed by an Altos work assessment followed by benefits being stopped and loss of their home. Than branded a work shy scrounger. Than having to sleep hungry and homeless with only the Daily Mail newspaper for warmth.ReplyDelete
Shared this on Facebook with a strict injunction for everyone I know to read it.ReplyDelete
I know something of how it feels to be desperate to do something that a condition won't allow you to do. We all really admire the fight you put up against both your body and the powers that be. Thank you for everything you're doing. I hope you can get something like a decent rest and gather your strength before the next onslaught.
Always best wishes. xxx