Thursday 13 March 2014

A Cry for Help

As regular readers will know, I've always been adamant that I can't take money for campaigning. I don't even have advertising on my blog.

The moment I accept the offer of some well-meaning charity, union, politician or corporation, I would become fettered by them, compromised. They would have control over what I can say or do

You might remember that I wrote a blog post early in the new year announcing that I just couldn't continue to campaign for free.

As a result,  I planned that if I only did the really important stuff it might just mean a droplet of respite for my poor long suffering boys.

You must also be wondering why so many typos at the moment?

Basically, my laptop is so riddled with viruses, it's impossible to do anything at all, so I've been trying to blog, email and tweet using my phone. I checked in the Oxford English dictionary and as I thought, this is the very actual definition of frustration. It's already been fixed twice, costing £120, but I think it's just past it now.

However, in the last month alone, I've :
  • Been to London for channel 5's Big Benefit Row
  • A meeting with Bns Tanni Grey-Thompson at the Lords, 
  • A meeting with the Fabian Women,
  • A meeting with Kate Green
  • A trip to the Royal Hospital for Neuro-disability to experience eye gaze software. 
  • I've been to York to lead the Better Way demo. 
  • Finally, I've had to get to 2 hospital appointments, also in London. 
Obviously in most cases, I can get my expenses paid by whichever organisation invited me but it can often take weeks or even months to refund. When I have to meet MPs or peers, it has to come from my own pocket. If I have to drive long distances, we have to stop every hour or so to top me up with tea and loo breaks.** 

At the moment, I'm owed nearly £350 in expenses and this has been the case, give or take, since the start of this year. Taken from a family budget already stretched by supporting a disabled adult who can't work, every day that goes by drags me deeper into panic. 

So with a heavy heart, I have to ask you to support me in a rather more obvious way. I've set up this fund : 


To :

A) Replace my poor laptop with a better quality one that doesn't crumble in the first year
B) Set up a "pool" of funds to act as a kind of kitty that I can dip into and pay back, buffering me against the constant uncertainly of how much campaigning trips cost and how long refunds take to come through.

I absolutely HATE doing this. I've only ever asked for support for myself once, during the frenzy of Spartacus Report and I detest the fact I'm having to ask you again. 

Whatever happens, please DON'T donate if you can't afford to, out of some kind of loyalty or guilt. Also, please DON'T donate huge sums. If we all just give a few pounds, we'll reach the target in no time. In this case, the quantity of donations really is better than the quality. 

**Clearly they can only get hold of the gold plated teabags at the moment if tea costs £3 a go!










49 comments:

  1. I can't get the link to work, it goes through to gofundme's "set up a fundraising campaign" page

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  2. I can't get anywhere to put in funds from the link. It only asks me to setup a page.

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  3. Sue whilst I not at the moment have funds to donate to your good cause due to this http://diaryofansahstrokesurvivor.wordpress.com/2014/03/07/a-clear-case-of-disability-benefit-denial/ I am a dab hand with PC's and can sort out your current pc for free, if only to have it as a backup all you need to do is package it well and sent to be with a returning address and ill get onto it. You can get me at @leonc1963

    Take Care

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  4. Hi Sue,

    This may seem silly, but you do know about getonlineathome.org if you're on ESA and/or DLA?

    Just a useful bit of info if you don't, and for anyone else out there who reads this blog.

    Pip

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    Replies
    1. Hi this is a great link but having checked the specs of the types of laptops on offer they wouldn't suit Sue in regards to longevity,

      The memory is too small at 1GB RAM and the hardrive also @ 60GB. Something that is going to allow her to multi task, and not freeze up if she has more than one page open at a time,and that will also allow her to not have to worry about space for awhile.

      Atleast 6GB RAM with atleast 500/1TB Hardrive . and possibly 2.4ghz processor speed or Core i5, i7 processor .

      Would love to donate Sue but link isnt working properly.

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  5. I can't get link to work - would like to donate !

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  6. Can I offer you a free netbook, Sue? I was going to sell it but despite being "as new" it's worth only about £50 so I'd rather it went to a good home. It's a Dell Mini Inspiron 10 with a 6-cell battery (instead of the usual 3) and runs on Windows XP (so someone would need to upgrade it to Windows 7 soon). As I say, it's as new as I've barely used it in the last 4 years. Shout me if you'd like it and we can sort out how to get it to you. x

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  7. Another alternative could be is to install an linux operating system instead of windows. Ubuntu ( http://www.ubuntu.com/ yes it is free ! ) is pretty good and user friendly for most (ex-)windows users who does not want to be chained up to paying for updates/upgrades etc. Also another plus is that attacks on linux system is pretty rare as most virus etc targets windows operating systems. Anyway, keep up the good work ;)

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  8. I find it most abhorrent of you to be asking for funds when other campaigners work tirelessly and for nothing inspite of ailing health

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    1. Hey, "Anonymous" - hiding behind anonymity is brave, eh? Sue isn't asking out of greed or entitlement, or to make her life cushy and comfortable, but out of necessity. It's our campaign and Sue is easily our most powerful voice: only seems right we should all chip in *if* we can do so, so she can do what she does best on our behalf.

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    2. I do not hide, i just do not have any other id to post under and I am not the only one who thinks like this, There are many many good campaigners who do great work without the need to ask for funds and have failing health condiitons too and in my opinion do a lot more good for our cause Paddy Dean

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    3. If you don't want to help, please shut up and go away.

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    4. ..Such as the inspiring Simon Stephens who is entirely self-funding because he will do whatever he's told by corporate masters for a fee?

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    5. Oh dear dear dear. How rude some people are when faced with an opposing view point ....I am entitled to say what I feel and I am sure that Sue being such an ardent Labour supporter(of that we are on the same side) would allow me to disagree with her. I am not and never have been one of her adoring fans.

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    6. I wasn't being rude, just saying not everyone minds when Sue asks for support, (financial or otherwise). I don't mind helping Sue, if only for the reason she sticks one up the establishment every chance she gets and i see lending a few pounds to help her every now and again as fair return for the pleasure her efforts bring when she puts the likes of IDS and Call me Dave on their backsides, on the behalf of every disabled person in the world.

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    7. Anonymous it's not a question of being a fan boy of sues it's about her caring nature and in that without the likes of her and there are only a few in the country like her' all sick and disabled in some way or another the likes of people like myself would be living in a sort of hell hole

      sue like myself are in this welfare reform to the bitter end of which most sick and disabled and long term ill wont even make it over the next 5 years and it's about all the people in the uk woke up to that fact and that fact alone

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    8. Turn the passive-aggression dial to 11, it's the only way to keep this non-constructive dialogue going!

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    9. Not sure I appreciate the implications of your remark Nick. (above) Plenty of us will still be around in 5 years, still fighting with our last breath. And yes, poverty is killing people too and you're right that we need to expose what's happening but I'm very uncomfortable with the 'special individual' theories of change. They tend to only speak for themselves if they have no clear, democratically based mandate. Sue does some good work but there are many more who can, will, and are, doing just as much. Remember, nobody's indispensable; this is about the bigger picture, not one person.

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    10. I'm sorry you feel that way. There will always be a few who feel like you do.

      But the choice is for me to carry on doing what I'm doing and ask others to support me a little or stop what I'm doing altogether because I just can't afford to go like this.

      And so I ask those that want me to keep going to share just a small part of the burden with me. If others don't approve, that's fine, there is no obligation to donate. People who want me to represent them will decide if (and clearly did decide) they want me to be able to carry on doing that or if they would rather I stopped.

      I also need to take a PA with me on these trips to push my wheelchair etc. At the moment, my husband uses all of his holiday to take me, but I need to be able to start paying a PA occasionally, it's just not fair on Dave to keep on like this.

      As my campaigning has grown, so I get asked to do more things. Where I might have only had to go to London or elsewhere once every couple of months, now it is nearly every week .

      I've spent thousands of pounds so far, andf not once have my boys ever moaned about me spending whatever I have to to get to various places, but it's not fair on them.

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    11. Sue, you don't have to explain yourself to anyone. There is always the one apple in the barrel that has to hide behind a computer and spout forth.
      As for Paddy Dean - I cannot for the life of me understand why people like you have to write your negative drivel, if you don't like what a person is doing then you just keep away, simples.
      It took a lot of courage for Sue to ask for a bit of help - remember that the next time you need help of any kind!

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    12. Negative drivel??. I was of the opinion that opposing views made for good debate. I was merely pointing out that in my opinion if you cannot afford to do whatever it is you want to do then simply stop it. There are millions and millions of people who are finding it very difficult to feed their children or keep warm. Million of others who make do with second hand laptops etc as that is what they can afford.. . There are campaigners who have been exposed to guns being pointed at them at conferences, go to protests in all weathers and they do NOT ask for funds.. As for asking for help, I am of the mind that there are people in far worse circumstances than I could ever be to stoop so low!

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    13. Your opinion is of no matter to me, or indeed to many who are donating. If we want to donate, then we do. You don't want to donate and that is fine as well - but go away and annoy someone else now as you have absolutely nothing else to say.
      This posting is not about a debate, but a genuine plea for help from someone who does so much good.
      From the way you state it that means that all those who are in poverty should not do whatever they can't afford, comes across as "If you can't afford to eat, then stop doing it!" or "If you can't afford to put the heating on then put on another jumper" - are you related to Cameron or IDS???

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    14. Neither is your opinion any matter to me and if you do not like what I type then you do not need to read it.. You have completely misconstrued what I was saying but then that is what I would expect of such blind loyalty And a genuine plea for help?? "From someone who does so much good?" Now that does amuse me. . As to who I am related to, I would rather be dead than related to any Tory and if they had their way I probably would be . This is my last comment on this thread as it is getting quite boring now so please do not bother yourself to reply At least I am under no illusions about Sue Marsh and there are many others who feel as I do too

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    15. In reply to your "if you can't afford to do it! then stop" Sue is giving people the opportunity to be their voices for them. I am - just - managing to have a small career. I have no ability or physical strength to do any more than survive that and rest I between. Sue IS my voice - I (and others) WANT her to continue speaking. She is not one person campaigning. She is MY voice too, and I for one am thrilled that she realised she was in a situation that would eventually make her stop - and say that to continue she needed our help. Asking for help is tough enough, and. For one am proud she did ask - rattan than (as you suggeste) stop. If we give up now, our voices will never be hear. Go Sue - we are behind you all the way. Xx

      Thanks,
      @fribbit

      Delete
  9. This comment has been removed by the author.

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  10. Alison13 March 2014 15:22
    Oh dear, Sue - when I clicked on your link I was asked to sign in so signed up. having done that I was invited to set up my own profile to enable me to seek funds for myself. Has your campaign gat a name I can search for?

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  11. Sue, know you wouldn't ask if you had a Fairy GodMother, so pleased to step in with my contribution.......every little helps.
    Hopefully soon you will have a supa dupa laptop ;-))))) x

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  12. Me too - the link doesn't work...

    Do re-post it!

    And add me to your 'awesome' list on Universal Credit! Hint hint!
    bit.ly/Brians-Blog

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  13. http://www.gofundme.com/7i7iow?pc=tw_u

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  14. Concerning a new laptop - have you considered a Chromebook? People I know who have them seem to rate them very highly, as long as you're not looking to do any high-end gaming or need specialist software. As it all runs on top of the Chrome browser, there's much less to worry about when it comes to viruses, configuration etc.

    Having said that, they work best if you're already using Google services quite a bit (gmail etc).

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  15. I have donated what I could. It's not a lot, but your work is so vital. I will give more when I can. x

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  16. Use linux mint - that way you can boot windows off your laptop and won't have to worry about viruses. http://www.linuxmint.com

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  17. Sue, so many of us are grateful for what you do and will be glad of a small to chance to help and support you in your efforts.

    Not sure what to do when I click on that link - should I register with them or can we search for the name of your account to donate into??? Will gladly donate when it is a bit clearer how to.

    Best wishes,
    Carole

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    Replies
    1. Oops a typo - I meant to say "glad of a small chance to help and support you".

      Delete
    2. I am not anonymous I am @jackiescoones don't understand other profiles would like to donate,but it won't accept my email/password.will ask at the library today to see if they can help,will keep trying.think its a really good idea,you are doing so much work,you need a wage.if there's another way to donate,let me know xx

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  18. I'm glad to have given a little and wish it could be more. Could you please fix the link to your funding page so that people can get to your fundraising page?
    I know you don't want to ask but I for one am glad that you did.
    You help people so much, the disabled, the long-term sick, their carers and their families.
    Go and get a great laptop, have that security of knowing that you have a little pot that will get you to the meetings etc.
    If you are offered other laptops, notebooks, etc. then grab them with both hands as these can be on standby should anything happen. And send your broken and old laptop to Leon - it'll give him something to do that he likes doing :)

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    1. Sue's fundraising page is http://www.gofundme.com/7i7iow?pc=tw_u
      Hope she gets the funding she deserves :)

      Delete
  19. Run this http://www.mostiwant.com/blog/avg-internet-security-free-download-trial-serial-key/ or reformat your computer. I can riddle my computer with viruses and clean it out again in under a day. Claiming you need a new one is a joke.

    It's like I said, you are a money-grubbing media obsessed person. Don't fall for this sob story if you are not in the know about computers.

    I hope peoples details haven't been compromised by your failure to protect your computer?

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    1. What a completely unpleasant and unnecessary remark. Most modern software is so large that it makes laptops obsolete within a few years, unless you have specialist computer expertise and plenty of time and energy. Even then laptops only last for so long. Many people want to support Sue, but nobody is saying you have to - let them do it and stop being so mean to someone who is doing her best for others despite very difficult circumstances.

      Delete
    2. Well aren't you clever clivegsd? You can riddle your computer with viruses and then clean it out again? Well whoo hoo you!
      Sue has stated that her laptop is old and has been repaired twice. Did you know that a computer is like a car? once it's gone out of the showroom it's lost value due to upgrades already being put into the next lot of cars - it's the same with laptops which are changing all the time.
      I would also think that Sue would benefit (for all our sakes) with a larger memory and processor which would make things a lot faster for her.
      I really feel for people like you - never, ever happy unless they have something to moan about.

      Delete
    3. Don't bother - clive has a reputation for being a bag of vitriol and merely ends up getting himself kicked off quite a few boards for his Only Campaigner in the Village attitude.

      This problem with laptops has come up before, and it concerns me a bit; my son has an iPad and he's never had to worry about viruses, it goes everywhere with him, and has a tonne of functionality compared to a computer. I'm actually looking into how I could somehow distribute tablets to disabled and vulnerable people who would otherwise be isolated or unable to campaign, work, communicate or do voluntary work or whatever they'd wish to do. I'm currently looking into the concept a bit now - and while as a charity we couldn't have political affiliations, nothing would stop said charity from donating to political campaigners, surely *whistles*. I'm still doing research on the idea.

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    4. The fan has gone and the hard drive is broken. It would cost more to fix than replace

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    5. I made the post below before you posted this. High Street laptop repairs can cost a fair bit for labour but less so if someone is willing to do it for free. A new hard drive is about £80.00 and the fan might need cleaning rather than replacing if not the part itself might not cost much. I know you need a new laptop but it would be worth you passing the old one on to someone willing to fix it. Also to avoid fan failure in future it is better to use the laptop a hard surface that does not create static or hold heat that can damage the laptop components. I realise you probably do that already but thought it worth mentioning.

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  20. Once you have your new laptop it would be a good idea to install Norton Internet Security or something similar. It does not cost much and blocks things like viruses eg if you click on a bad link that contains a virus Norton stops it loading and so the laptop does not get infected.

    Your old laptop can be recovered back to factory settings and passed onto another campaigner who does not have a working computer. If you need help with how to just post the make and model of the machine and I can look up the procedure for you.

    I remember you getting your current laptop a bit after the Spartacus Report came out and it is a bit concerning it has not lasted very long but some of the cheaper machines eg £300 do run slow when they have a lot on them. A few years ago I saved up and bought a Sony Business laptop for £800 it is lighter and more robust than my old Compaq. With the added bonus of hardly any 'bloatware' which once installed slows the machine. Bloatware can be uninstalled.

    If you home insurance covers items like phones, cameras and laptops when you take them with you when you go out you wont need theft or accidential insurance for the new laptop but if not then it might be worth getting something like the cover the big High Street computer shops offer including the remote fix option.

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  21. my tuppence worth - commodo works well for protecting both work and home computers and it is free. and for a little extra we also use malwarebytes.

    Good luck.

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  22. So pleased that you will now have enough money to buy a decent laptop that will get you through the next ?yrs to carry on campaigning.
    Sometimes think that some people are unaware of the hammering your last one had! Now in 'the old days' would have lasted for years and years *eeh, they were the days* lol

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  23. Are you planning to pay back the money to the people who donated, now that you have sold your soul to the Tories with your wonderful new job?

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