Carnival of differences – a request for posts.

As you’ve probably noticed, I’ve been blogging and tweeting a lot about the spartacus report and wrb (Welfare Reform Bill). I’d like to come at the whole disability awareness and benefit change thing from a different angle though, and I’d like to hold a blog carnival.

I want to host a carnival of differences. I’d like your posts and stories about disability, mental health, life with (or indeed without) benefits. Your personal stories about your problems, triumphs, highs and lows to share with my readers.

I’d very much like if we could make this a shared carnival – by which I mean that I’d like to send out the formatted links for you all to add to the end of your posts, so that ppl can hop through it all from wherever they find it, giving us all much more chance to publicise it. The only caveat I’d give is that this is a family friendly blog, so I don’t swear on it, and if your post contains strong language I’d like to be able to mention that in the link.

Is this something that anyone would be up for joining in with? I’d like to publish Thurs 16th so I’d need posts by next Tues 14th.

Please, this is our chance to win hearts and minds, and show what effect the wrb is likely to have on individuals, families and children. I have readers who don’t know what Disability Living allowance is, or why it matters, and I’d like to shine a light on that, but from a personal point of view. If you’re up for the challenge, please take a moment and drop me a line with a post. You can contact me through the comment form below or via my contact form. I’m also on twitter (often!) as liveotherwise, and can accept posts via tweets.

About Jax Blunt

I'm the original user, Jax Blunt I've been blogging for ten years, give or take, and if you want to know me, read me :)

Comments

  1. This is a great idea. I shall have a think.

  2. Oya's Daughter says:

    Twelve years ago, I had managed to get myself a job in a IP law firm as a PA, trying to move to paralegal. I was working out regularly again and was now an athlete, and even considered whether or not I’d do strength-training competitively as I had always been strong and muscled for a woman. Life was pretty good, but then things started to slack off. I found I would wake up hurting a lot, aches and pains I didn’t quite understand. As a gym-buff, I’d just shake it off – no pain, no gain, right? Same with working in law firms – lawyers don’t want to hear you’re tired, everything is about motivation. So I kept on.

    But eventually I had to stop the gym. And then I struggled to keep the job. Every morning I’d get up and stagger to work, sometimes in so much pain I couldn’t bend down to pick things up off the floor. Everything ached, I was exhausted, the weight piled on…and of course there was no sympathy, not from the jet-set. Eventually I lost the job.

    I was diagnosed with fibromyalgia, and like most people with the issue we get the pep talks about how we just need to keep moving, keep healthy. We’re given leaflets of smiling people riding bikes and get this view that it’s not going to change life too much, we just need to sleep more. But talk to people who actually HAVE it, and there’s a different picture. I got worse. Much worse. While I was married to a man who was amazing at the time and cared for me very much while ill, when I got pregnant I was having to get pushed about in a wheelchair as I could no longer walk. Two years later, my son was diagnosed with autism, and the caring man couldn’t deal with two people to care for. So away he went.

    The fibro symptoms were getting worse, even while I was trying to come to grips with an autistic, hyperactive child. I suspected there was something else going on and so I went to doctor after doctor, trying to get someone to listen. But when you’ve got a chronic illness, especially something as nebulous as fibro, CFS, or ME, ever single symptom you have is attributed first and last to the mystery illness. No one wants to look at other symptoms. No one wants to talk about it. Social services kept telling me since I could dress and wash (even if I was doing so in a sink) I didn’t need help. Child services never did anything at all. I eventually gave up and just tried to focus on my son, who was getting excluded regularly because no matter how hard you try, a square peg will not fit into a round hole.

    Then the hospitalisations started – one seemed like a nervous breakdown, and I got no help with that either, believe it or not. It was ignored. But the near-blindness raised a few notes in my file when my eyes swelled up so much I literally couldn’t see for nearly a month. Still, nothing. Then the hospital trip – what should have been a routine surgery turned into a four month battle of infections and skin refusing to heal. This too was noted and a few tests were run. When I ended up in hospital again (for the third time in under a year) the consultant took it upon himself to look up some more tests and make a referral. This time, I got a somewhat more sympathetic rheumy, more tests were done, and it turns out I have an auto-immune form of arthritis.

    All this going on, and I still have a child who is on his third mainstream school struggling like mad. At the moment I have attended one tribunal for his SEN to try and get him to a special school, filed one complaint with social services and the Ombudsman for being abandoned when I needed support, one tribunal for my son’s DLA which was granted, but now the DWP is trying to find an error in point of law so they don’t have to pay me over a year of my son’s Higher Rate DLA (it’s a delay tactic, nothing more), and currently going to have to go back to the SEN tribunal next month. I haven’t had my own medication for over a month as I have no time to get it – my son only attends school for two hours a day as the local school has zero idea how to deal with a child with autism and they have less-than-zero interest in learning how. His father has his visits once a month but never calls to see how his son is, never calls to talk to him, and never shows up for meetings anymore (indeed, if I have to go to hospital again and there’s no one to cover for me, I have to pay my ex the wages he would lose for not going to work. He works in the financial banking sector…I’m a disabled single mother on benefits. Spot the irony of me having to pay him to care for his own son).

    At the moment, I’m keeping my head above water and have a bit of money left over at the end of the month, primarily because while my current life is exhausting, I do sometimes have time to rest. I am not pressured to work when I can’t (I’m taking six months off self-employment to try and manage my health better and get more support). I don’t need to be “incentivised to work” as Lord Freud put it so nastily last week during the debates. I have a job. I have two, actually if you count being a carer for a disabled child. What I don’t need is to be harassed and hounded for being a scrounger – and the last place we lived in, it was standard. Child of course is “just naughty” and I’m only using a cane because I’m a fake according to many people. We stopped bothering going anywhere because I couldn’t bear to have people be so vicious to my son. I was hoping for the Mobility component for a car so we could go out when we want to, under our own independence, without the **** of busrides or expense of taxis, but even that is a bone of contention.

    I get DLA now, and so does my son, but under the new PIP I’m pretty sure I won’t get DLA at all. That will cut our income by half. I’m utterly baffled how that is going to save anyone any money, having me MORE reliant on the state rather than less. I’m fighting it tooth and nail right now, even though I have already moved to smaller, cheaper accomodation in anticipation of cuts although we’re just as housebound as we were before. I know there are people worse off than I am, even. And I’m furious.

    People ask me (with rather stunned expressions) how I manage to do what I’m doing. True answer? I don’t know…I just do it, because I have to. It becomes normal to get up at 4am to change sheets, it becomes normal to realise at 1pm that you haven’t eaten all day. It becomes normal to stop going anywhere because you know you’re probably going to get a panicked phone call from the school saying they’re excluding your child. The pain becomes normal. The inability to lift a cup of tea becomes normal. Maybe it shouldn’t be…I would guess it shouldn’t be, but so it is. But if my life as it stands shocks people, I do wonder why they think making it worse will help anyone.

    • Thank you for sharing your story. I’m overwhelmed by what you’ve gone through and what you are still going through. And I think your point about reliance on the state is a telling one – changing the criteria is not going to save money at all, but it will move it from one budget to another, so it will look like a saving up front.

  3. I think I can manage a post about that. I’ll even try to write something positive in it!
    TBird Anni recently posted…Slow build up Birthday!My Profile

  4. I can write something mental health related and I’ll link to this post on the LAB sites and point folk this way x

  5. Hi,
    What a great idea. I have had long standing problems with my health and ultimately, the DWP.
    In January, after nearly 12 months wait I won both of my tribunals; the DWP managed to close all benefits information about me, so I received nothing! I am still trying to rectify it.

    Good luck with the blog carnival.
    Nikki recently posted…Competition: Win a Barbie Princess Charm School with our friends at ArgosMy Profile

  6. This is an excellent idea – good luck with it!
    Midlife Singlemum recently posted…DancingInTheRain: Late AgainMy Profile

  7. literally just wrote this http://mamacrow.blogspot.com/2012/02/scraping-barrel.html
    not really sure it qualifies for your carnival, but thought of you
    mamacrow recently posted…Scraping the BarrelMy Profile

  8. This is a great idea, and I’ll look forward to reading the posts. Not sure I can get anything together in time for next Tuesday, though. But I’ll try!
    Tim (aka Dotterel) recently posted…Happy Birthday CBeebies!My Profile

  9. Brilliant idea! I touch upon these issues (twice exceptionality) in my funnylass blog.
    But…
    Do check out the incredible Stuart Vallantine – am sure he would tell you plenty about why he is campaigning for the same issue, and how the web has helped him etc – see
    http://www.stuartvallantine.co.uk (see bio)
    and his blog is at
    http://mancunian1001.wordpress.com/

    Good luck!

  10. I’d like to take part from a teacher;s point of view if that’s ok?

  11. I maded you a post: http://whoteacheswhom.me.uk/?p=373
    Ailbhe recently posted…Temporarily AbleMy Profile

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