Blogging Against Disablism Day 2015: Scared of the Government


Blogging Against DisablismThis post is part of Blogging Against Disablism Day 2015. My brain is very foggy so apologies for any mistakes.

There’s an election next week here in the UK, and I’m scared. The last five years have been very difficult for my friends and relatives, and it’s looking likely that it’s just going to get worse. We’re some of the least affected I know, yet even we’re feeling the effects of the cuts and sigma caused by this coalition government. Most of it is because we’re disabled and not a “hard working family”.

I’m one of the lucky ones in many ways. When moved over from Income Support to Employment Support Allowance, I was placed directly into the Support Group without needing a work capability assessment (the Support Group is for those considered unable to work now or in the near future even with support, though the criteria is mostly unrelated to ability to work). My Disability Living Allowance renewal (I’ve not been moved over to Personal Independence Payments yet) went through without an assessment as well. Now that’s probably due to being completely bedbound and having mountains of supporting evidence, but I’m incredibly grateful. It’s also very rare.

The coalition government’s stated aim was to reduce the amount of people on benefits, especially the disability and illness related benefits such as the ones I’m on. They’ve managed to do this, but not to the extent they said they were going to, as most people were more ill or disabled than they realised and the fraud rate was much lower than they implied. What they have done is caused a lot of harm, and even deaths through sanctions, delayed and denied benefits, and the effects of other cuts culminating in people no longer being able to manage when previously they could.

It’s already very hard. If you’re not a “hard working family” (working full time – part time even if you’re ill or disabled doesn’t count) then none of the big political parties want anything to do with you. If the Tories get back in, they want to extend the sanctioning system they’re already using against the unemployed and those in the work related activity group on ESA to those who are working part time, even if there’s no full time jobs available. They want to tax DLA and PIP,  reducing the incomes of the ill and disabled further. That’s before we get to things like universal credit, the benefit cap, and the other ways they’re apparently going to slash the benefits budget.

Labour have also gone full in with the hard working families talk, and have said they don’t want to be the party of those on benefits (so people like me). The Lib Dems supported the Tories with all the benefit cuts, so no matter who gets in (as with the first past the post system it will be one of the big parties, even if they have to form a coalition) it looks like it’s only going to get worse for those who are ill or disabled in the UK. UKIP are scary with their racism and bigotry, and though the Greens are the closest in terms of politics to my views they support euthanasia, which is dangerous in a society that considers disabled people worthless.

I’m too ill to work. Even the government agree with this. Johan looks after me, which means he’s on call 24 hours a day, is frequently sleep deprived, and he still hasn’t got the help he’s been assessed as needing by social services. Esther can work part time, but even though there are very few full time jobs available and many people chasing each one she doesn’t count either, despite doing voluntary work on top of her paid job.

There’s already been an increase in disability hate crime, mental illness, worsening health and deaths due to the government and the scrounger rhetoric. Friends who have ended up begging for help as they have no income while waiting months for assessments and to hear whether they’ve jumped through enough hoops, friends who have ended up in hospital because of the stress.

I hope I’m wrong. I hope that whoever is elected in on Thursday will reverse the budget cuts, tightened benefit criteria, the sanctioning system and actually work to improve life for those of us who can’t work full time. I don’t have a problem with fair assessments for benefits, or for helping those who can work with support to do so, but it needs to actually be support, not just threats to remove someone’s income if they can’t jump through often impossible hoops. I don’t know who’s going to be in power next week but there’s a chance to improve things and I want them to take it.

Voices From The Shadows

Been asleep all day so a short post now 🙂 Also, apologies for my blog being down- I have monitoring set up but Johan doesn’t, and being asleep meant I didn’t get it fixed until after I woke up again.

One of Vikki George’s 30 wishes (see last post or is for 30 people to watch Voices from the Shadows. I have this on DVD, though I’ve not been well enough to watch it yet. However, those who have seen it say it’s a very important film about severe ME.

At the moment it’s free to watch online (until the end of the year, maybe longer) using the promo code VOICES on Vimeo. You have to register your name, email address and a password, which you can do after clicking the “rent for $3” button. You put the promo code in by clicking the “apply promo code” link under the billing information section (which you can leave blank).

The film is very emotional and is not suitable for children or young people with ME. It’s meant to educate those who don’t know the illness or the issues surrounding it. However, if you’re an adult it would mean a lot to me for you to watch it. Thank you.

My 30 Wishes – Vikki George

This is my 30 before 30 list
But here comes the twist,
Because of my illness and disability
You will have to do it for me,
See I have these plans in my head
But I’m stuck 24/7 in a hospital bed!

I first came across Vikki George in a Reader’s Digest magazine years ago, where she was featured as a local hero for her work on Post Pals. She’s had severe ME now for 13 years, and has spent much of that time bedbound. Despite this, she’s managed to start and run a charity from bed sending post to seriously ill children. Since I became ill with ME I’ve been able to get to know her a bit and she’s very awesome!

Vikki’s 30th birthday is coming up and she wants to do 30 things for her 30th birthday. Being stuck in bed though means she needs help, and this is where you come in 🙂 On her website she’s got her 30 wishes and she wants as many people as possible to complete them. Some of them are relatively easy, others are harder, but all of them will improve someone’s life in some way.

The link to her wishes is Please visit and if you can help with any wishes, do so. I want her to have the best birthday possible 🙂

Spread The Hope

One of the awesome people I’ve met since I’ve been ill is the amazing Jessica LE Taylor. I first spoke to her on Twitter, after coming across her video The World of One Room  and discovering that not only did we both have severe ME, she also had some of the same symptoms I did, making me feel much less alone. I’ve since been following her progress, which includes sitting, standing and even taking her first steps thanks to intensive therapy in a private hospital.

Jessica has had severe ME for years, spending much of that time in hospital paralysed. While there, she wrote a song. Spread the Hope has now been released as a Christmas single, with the proceeds benefiting four charities: Share A Star (started by Jessica, sends special holding stars to seriously ill children), Post Pals (sends letters and gifts to ill or disabled children), Help Harry Help Others (cancer charity giving hope) and The Katy Holmes Trust (cancer charity hoping to find a cure for paediatric brain tumours).

You can watch the single on YouTube below and buy it from

ME Awareness Day 2014

Danni on ME Awareness Day 2014Yesterday (Monday) was ME Awareness Day. I had a couple of ideas of blog posts I wanted to write for the day, but my brother came over on Sunday and I spent too long chatting, which means I now have payback. I didn’t wake up until 5.20pm and spent most of the evening in a weird fuzzy state. I had been doing really well (last week I managed 2 hours in the living room with no worsening of symptoms) but I pushed too far Sunday and now I have to pay.

That’s the defining symptom of ME- a worsening of symptoms due to too much activity. What counts as too much depends on the person and the severity of their illness, and to make things complicated it can change from day to day, from hour to hour. The payback has various names (the most common I’ve seen being post exertional malaise or post exertional neuroimmune exhaustion) and the symptoms it causes are as varied as those of the illness itself.

My payback today consists of a worse than normal headache, pain behind my eyes, greater light, noise, smell and touch sensitivity, more pain (mostly muscle and joint pain, some nerve pain, other random pain I can’t really define), more muscle weakness, worsened coordination, worse nausea, difficulty swallowing, muscle spasms and the fuzziness I mentioned earlier. Compared to how I’ve been the last couple of weeks, it’s pretty bad, but before then this was pretty much my normal. I’m hoping with lots of rest I’ll get back to where I was.

If you want to find out more about ME, my previous blog posts about it from two years ago are linked at the top of my blog. There’s also the #MEAwarenessDay hashtag on Twitter. Jenny, Stroopwaffle on Twitter has tweeted about living with very severe ME for years. If you know any other good places please comment as I’m not sure when I’ll be up to finding them. It’s a sucky illness but hopefully there will be a cure found.