Sunday, 16 January 2011

You will NEVER take away my shoes

Do you know how brave this site is?
We all know it who have posted here. We all know that by writing too well, or too often or too scathingly, we put ourselves at risk. Some of us will be or are being "investigated". Some of us will simply lose our sickness or disability benefits, which could mean losing our independence or even our homes. 

Despite this culture of fear we are living in, just look at these stories! Could you honestly read through them all without feeling astonished at the state of our care of and attitudes towards the sick and disabled?

If you are one of the mercenaries hired by the ATOS monopoly to prove we've all been cheating all along, you can watch me if you like. Take your pictures, twitch the curtain, send me forms and summon me to assessments. Doubt me, judge me, even try to take away my dignity, but you will NEVER take away my shoes. 

If I have to use a wheelchair, then surely it's time for the 8 inch hooker heels? (Electric-blue satin with never ending chrome spike heels. If I can't walk anyway...) If I feel like wearing fake-fur and ripped leggings I will. I will wear red lipstick and paint my nails gold. If I want to go to dinner with friends and sip cocktails and nibble tapas and pretend, just for once, that I won't pay for it dearly later, then I will. I don't do hair shirts and self-denial.  

If I have a rare good day, amongst the searing pain and endless vomiting and I want to dance, then I will dance. Joyously, because I know that joy is fleeting. If it puts me on the floor, I will still dance, because I am free. You can't tell me never to dance. 

If you follow me walking my kids home from school one day you might see me chase them, giggling until we fall in the crunchy piles of autumn leaves. Will you see the wince I try to hide as we carry on home? Will you notice my six year old take my arm because he's already learnt what giggle-chases cost me? But I vow to chase my kids whenever it might not kill me.

If I see your hypocrisy clearly, I will write about it with scorching fire.  I will tweet from a hospital bed, with my drips and my bleeps and my needles and tubes. Read it if you like, you might learn something. Writing is all I have then - did it ever occur to you I can dictate? 

At weddings, I will wear a hat. An enormous, wide brimmed, floppy hat, with freesias stitched into the brim. I will hold my head high, push my shoulders back, paint on a dazzling smile and sip champagne. Life and soul for the hour or two life and soul is required. But will you see me when the mask slips? When my soul can’t cover for my life any longer?

I can transform, butterfly-like with expensive skincare and will-power. The grey, clammy, puffy little face you know will emerge, glowing and radiant, my eyes sparkling, my hair shiny. Like Cinderella, the sheen will fade by midnight, but you might not notice, busy as you are marvelling at “how well I look.”

One warm, summer afternoon, when the breeze feels like silk, I will take a motorbike ride with my husband, racing through hazel lined lanes across the rolling South Downs. I will gulp in pleasure and live a year in those few, adrenaline-fuelled hours. I will pull off my crash helmet, shaking my hair and laughing at life. I wonder if you'll remember how little my life normally gives me to laugh at?

So, whatever money, or security or comfort you try to take from me, all those other things are mine. Chronic illness takes away almost everything you ever took for granted - ambition, spontaneity, careless energy, dreams, independence - sometimes even love. When any of those things come fleetingly within my grasp, I will grab them. 

Wearing an Elvis print mini-dress with pink polka dot Jimmy Choos. 

**Once again, please share/link/tweet - I don't care where, the more people read these One Month Before Heartbreak posts, the better. Yes, you can copy and paste it into emails, yes you can send it to your MP. In particular, perhaps I can ask you to send this to high profile women via Twitter and Facebook? On Twitter with the hashtag #ombh. We need friends in high places who are prepared to support us. 


  1. I took my wife out for her birthday to a local Indian restaurant. Yesterday I was told that I should shut my pus about benefits and losing DLA. Apparently I didn't even efing work and yet I could afford to take my wife out. If you don't work according to this person then you should just get enough to live by. Unless your so disabled that your bed ridden everyone can work including me apparently.

    That kind of attitude i'm sorry to say isn't isolated. This is the sort of prejudice and ignorance we have to fight. So if we're dressed up and looking smart, if we can be fashionable, if we can think for ourselves and have a modicum of independence then we don't need help. The press have worked on this for a number of years now. They have created the idea in peoples minds of an old Victorian attitude, the undeserving poor. If you don't fit the disabled stereotype, if you don't look slightly misshapen, or drool, or spit when you talk, or slur, or shake, or make frequent noises then obviously you are one of the undeserving poor. Of course if you do exhibit any of those traits then you should be locked away in a Leonard Cheshire home out of the view of normal decent hard working families (why is it always hard working families, don't single people work). So the media have softened people up for the onslaught to come from this government and sadly, it was all started under Labour with ESA.

  2. Brilliant post! It's scheduled on the main blog for 1300 BG Xx

  3. This post is made of Win. I always said if I ended up having to use a wheelchair or scooter I would get the highest pair of "FMTH" (F*** Me Thigh Highs)I could find as I wouldn't actually have to walk in the things.

    I will not sit in a one room apartment and eat toast to convince anyone my life is grim enough to "deserve" benefits. Anyone who thinks I'm having "too much fun" to be "deserving" can get stuffed. I'll take what laughter I can get.

  4. Thanks for "getting it" Oyas Daughter. Now we tell "all the single laydeez" that "sisters are doing it for themselves"

  5. Reading this makes me realise that I have fallen into the trap of believing I should be miserable. I actually feel guilty whenever I buy things or if I walk to the (next door) shop without my stick.

    This is no way to live. All those people who have made it seem so and indoctrinated us so we feel this way should be ashamed.

    Great post Sue, thanks. I feel better now :)

  6. oh they already have my rants down on paper i went in for a caution last week and they had my facebook rants etc scribbled down.. ive started ranting bullshit now for the sodding fun of upsetting their nazi tendancies, i feel like going to the jcp next time in a ss uniform - just to prove a bloody point

  7. ive sent copies of your blog to Dame Ann Begg and Glenda Jackson and Caroline Lucus - there you go xxx

  8. What a wonderful post! I've printed it out and stuck it into my personal journal to remind me that I shouldn't feel guilty about good hours or even days. The shoes thing made me laugh out loud. I don't use a wheelchair but I do have mobility issues. A couple of years ago, in a 'mad moment' I bought the most beautiful pair of shoes in a sale. Red and Black patent, strappy with a maybe 2inch heel. I know that isn't very high considering the skyscrapers I used to wear, but still higher than anything I have been able to wear for years. And no I can't wear these either.

    For weeks I kept them on top of their shoe box, on the floor next to my bed. The first thing I saw when I woke up in the morning. A small sculpture of wishes and had beens. On my birthday I wore them, but only while sitting down. I had to take them off to answer the door or to move around the house. But still I wore them.

  9. Great new blog Sue.

    Have you decided what you are going to do in the next few months yet, or is that still tempting fate at the moment?

  10. A truly excellent post. Thank you.

  11. I strongly recommend thoroughly reading the blog link below.

    It gives a good explanation of the mess we've increasingly landed in the last 30-40 years, and the simple policies that would hugely increase the lot of the poorest but also those in the real middle, rather than the media and political classes upper middle and plutocrats.

    How the plutocrats live is jolly too...

  12. Thanks for a fantastic post. We shouldn't feel guilty for wanted to make the most of the lives that we have. As others have said, the constant attacks in the media make me feel guilty for everything - for laughing with my husband, for making a rare trip out of the house for coffee, for writing a comment on a blog post, for being able, occasionally to make a cake. Very rarely does anyone stop to think of the consequences of doing these things - or the fact that these little things are the sum total of our lives.

  13. Sue,

    I have tweeted and shared on facebook! :) Hope you get the traffic you deserve!

  14. Thank you for the timely reminder that I am entitled to a life, despite benefits!

    The tears I shed as I read it, washed away some of the guilt feelings of being reliant on a state that doesn't care a fig for me, personally.

    Keep up the good work! :)

  15. Thank you for writing this post thank you thank you. I just wrote a post titled A month before heartbreak on my blog. As Kat says above it also helped me to wash away some of my feelings of guilt. I am disabled not a criminal.

  16. I also have some killer stilettos including thigh-length fine suede boots (worn twice but barely walked in). They're going to come out of their boxes and they are going to come out on me one day soon in my part-time wheelchair. It honestly hadn't crossed my mind that it didn't matter that I can't walk in them. I have wheels now! Thank you so much for showing me that there's another part of myself I can reclaim, at least sometimes :-)


  17. Such a great post!! It really has come to that hasn't it. That we can't even laugh, or look ok with make up, or walk a few steps without a stick, without some ignorant person calling us fakers or scroungers.
    I suffer with ME and am going through a horrible relapse. This means I barely leave the house now. I'm too exhausted to sit up most days. When i'm slightly better I try to grab as much of life as i can, whilst knowing that i will suffer hugely for it after.
    Just to feel like i am able to do things i want occasionally reminds me that i'm still here under the illness.
    I also have bought some lush shoes but never go anywhere to wear them! lol

  18. Great post. Im another ME sufferer and found the link through Kerryn.
    I too have fallen into the trap of feeling I should be miserable and not enjoy myself. I should sit at home and 'be ill'
    So wrong

  19. This post has inspired me to write a blog post about shoes. I haven't written it all yet, so there is only the picture there at the moment.

  20. This post has been included in this month's Disability Blog Carnival - see Thanks for a really interesting contribution!

  21. This totally rocked. I found you through the disability blog carnival.

    I live in the states and have been following a little of what's happening in the UK through disability blogs. It's horrifying.

    I do worry about blogging under my own name and having to worry about who reads it and what I write, or what a neighbor sees and how they would interpret it, etc. Because I am being reviewed, all the time.

    Right now, I'm under review (just because they happen so often, not because I've done anything to "trigger" a review) for disability benefits, health care, and personal care assistance.

    It's impossible not to be aware of the bureaucracies and the power they wield when we are always having to prove ourselves in one way or another, worthy, which is to say, miserable.

  22. My father was a Labour MP for 33 years. His last agent was a man called Jimmy, a man who lived in poverty and ill health in all his life but who in heart was rich.

    He grew up in the depression. His mother was so poor that she could not afford to buy him shoes so she had to ask the authorities to buy a pair of shoes for her son. The shoes eventually came. They were marked visibly so that everyone could see they were shoes for a pauper boy.

    The poverty of the boy's family was marked out on his feet for everyone to see and do you another reason why these shoes were marked in this way? It was to ensure they had little or no resale value.

  23. An excellent post! I have tweeted it on the Camel's Hump twitter account. Have you seen the post I wrote on the same kind of topic?

  24. wierdly I dreamt about myself in high heels last night before I read this,maybe us disabled ladies in wheelchairs need a "High heels day"which can serve to remind folk,we need to live"occasionally,and yes if that means going to a wedding and trying to look normal and smile and even dance,for a few minutes,then we should be allowed,I was framed for doing something similar,no one sees me day after day in bed,unwashed in my less than squeaky clean nightie,no one see,s the huge cyst on my neck,I keep trying to hide with my hair,because the NHS decided to not bother with it ...yet.. we have to Live"they still dont get it...THEY could end up as a wheelchair user,and sometimes need to feel Normal,yes"High heels day,very like Cinderella but,is there a Happy ever after story"sometimes we are not asking for MORE money just to be allowed to soar" and yes dance for 5 minutes,if and when we can...will folks ever get it"?

  25. I cried reading this. Being currently one of the disabled being "assessed" by ATOS as I type, I'm not allowed to have good days. You can guarantee that on my one good day there's some ATOS nerd peering at me through a long lens and it's not worth the risk. So I sit here, when I can sit. Or I stagger around the house. Or I fall on the floor. Can't remain in any position for long so it'll probably take me two attempts to finish this post.
    But I'm a benefits scrounger, according to the red tops.
    Come and live my life for a year or two, all ye media scum. You'll soon change your minds!

  26. This post broke my heart, I'm not a person living with a disability, however my mum is but because she builds up her strength to collect my kids from school while I'm at university, or goes to te shops on a Saturday or to church on a Sunday, she's not ill enough for DLA. Shes an inspiration to me, because of the pain she goes through to simply play with her grandchildren, and to keep the small independances she has. I hope you always find the laughter in your life, and I love the sound of your sky high shoes you wonderful woman!!

  27. when i am old i shall wear purple...!?

    i say ... why wait

  28. What an utterly brilliant post! Thanks so much for the wonderful encouragement!

  29. What a wonderful and inspiring post!

  30. Oh my. Brilliant. But it also breaks your heart.