Carnival of differences – a request for posts.

Comments

18 responses to “Carnival of differences – a request for posts.”

1. 

   Victoria

   7 February 2012

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

   Reply
   1. 

      Jax

      7 February 2012

      Thanks, was partly inspired by conversation with you and others on twitter!

      Reply
2. 

   Oya’s Daughter

   7 February 2012

   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 hell 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.

   Reply
   1. 

      Jax

      7 February 2012

      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.

      Reply
      1. 

         Scottish Mum

         8 February 2012

         I totally agree. Taking DLA away just means the state have to pay much much more to support people who have been managing under their own steam with it.

         Reply
3. 

   TBird Anni

   7 February 2012

   I think I can manage a post about that. I’ll even try to write something positive in it!

   Reply
   1. 

      Jax

      7 February 2012

      Excellent, thank you.

      Reply
4. 

   Mammasaurus

   7 February 2012

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

   Reply
   1. 

      Jax

      7 February 2012

      thank you – every bit will help.

      Reply
5. 

   Nikki

   7 February 2012

   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.

   Reply
6. 

   Midlife Singlemum

   7 February 2012

   This is an excellent idea – good luck with it!

   Reply
7. 

   mamacrow

   7 February 2012

   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

   Reply
8. 

   Tim (aka Dotterel)

   10 February 2012

   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!

   Reply
   1. 

      Jax

      10 February 2012

      I hope you can, that would be great. There’s a bit of leeway built in – I want to publish on Thursday…

      Reply
9. 

   Christina L

   10 February 2012

   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!

   Reply
10. 

    Sarah

    13 February 2012

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

    Reply
    1. 

       Jax

       14 February 2012

       Absolutely, the more the merrier. As it were.

       Reply
11. 

    Ailbhe

    14 February 2012

    I maded you a post: http://whoteacheswhom.me.uk/?p=373

    Reply