Monday, January 31, 2011

It's My Nerves!

I haven't written a personal blog post for aeons. But here we are.

I went this morning for an EMG and nerve conduction tests. I've had them before and it involves sending electrical impulses through you to see what your nerves are doing, then putting a needle into your muscle and sending electrical pulses through that as well. It pretty much is as unpleasant as it sounds, though the wire in the leg muscle wasn't as painful as it was last time.

The problem came when he tested my arms as well. This, I think, is supposed to be a way that they can compare the damaged nerves in my legs to nerves in my arms which are ok. But the nerves in my left arm are, it seems, not ok. He kept asking me questions about my left hand. Was I *sure* it wasn't numb? Was I *sure* it was ok. I eventually admitted that I have been having some trouble touch typing with it, and he did some sensation comparison things on both my hands and, sure enough, I have a loss of sensation in my left one. This was clearly showing up in the tests he was doing, which is why he was so insistent.

The thing that scares me is that the neurological problems started with my left foot and leg, then a few weeks later affected my right foot. Now it has affected my left hand, I fear my right hand will be next and then... who knows? I do know, from reading, that this does happen with neuropathy.

He didn't give me any results or analysis, he sends his results to the neurologist who will then go through them with me. But I'm more than a little depressed about potentially having hands as crap as my feet.

Later I went to see my GP to talk about the ongoing neuropathic pain from the site of my neurosurgery last February, and he has increased my gabapentin dose. I'm trying to be optimistic but it hasn't helped so far, and it has thoroughly foul side effects for a few weeks with each increase. I'm going from 1200mg a day to 1800mg a day.

And there's more, of course. There always is. But that will do for now.

Sunday, January 30, 2011

I started, so I finished

After fixing all the linkage to the right, I decided it would be good to just prettify the whole thing. Welcome to my new blog design!

It's not perfect, and there are things that I would like to change but can't because it's a free template (like the twitter link in the top right hand corner, and the text colour), but I like the design, and it will do.

Now, Up To Date.

For a long time now, the links in my right side bar have been horribly out of date. They didn't represent the blogs I do read, they didn't represent the blogs I no longer read, and many no longer existed or had become password protected.

I used to use the right sidebar links as my way of keeping on top of which blogs I read, but now I read most blogs in google reader, and have been ignoring ---> for months and even years.

It got to the point where it was ridiculous, I wasn't linking to my favourite blogs and I was linking to lots of dead ones, so I set about the dreaded task of sorting it out.

So, for the last few days I have been going to each blog I linked to, and either adding it to google reader, or finding it was long gone, or finding it contained things I didn't want to read any more. So the blog list has been gradually shrinking - the more I did, the more I deleted.

And I have worked out a way to link to the blogs I like and read, without the sidebar getting so overwhelmed again, so now I have set up my blog list to be attached to my google reader account, but only the ten most recently updated blogs will show to the right.

I have also deleted a lot of the links that weren't blogs. The ones that remain are below the blog list. I should order them somehow, but I'll work that out in time. I have also changed my twitter feed, flickr feed and feed gadgets so they are more up to date, and look neater and fit in better, and added a 'most popular posts' thing right at the bottom of the page.

Saturday, January 29, 2011

Sheffield Seed Swap

There will be a Sheffield Seed Swap on Sunday 20th February at The Old Sharrow School, S7 1DB
we invite you to take some of our saved seeds and share with us seeds that you have saved yourself. Its aso fine to come empty handed ! we would just ask for a donation for any seeds you would like to take...or perhaps there is something else you can swap?
All the seeds saved here at the seed swap are organic and local.

This means that these seeds will be more suited to local climatic
conditions and will be more suited to organic growing conditions.

Seeds are one of humanities greatest resources. We rely upon saving seeds for most of our food, and much of our clothes and our medicines. One seed can produce a plant that will produce many thousands of seeds, each with the potential to produce many more thousands... is a good resource for seedswaps nationwide.

There will also be information on local community food growing projects, and other local food events as well some plants, cups of tea, and cake! This event is free. We welcome donations to keep this event going into the future.

You can find more information at

Friday, January 28, 2011

Mozaz's Funeral

Mozaz's funeral will be held next Thursday, 3rd February.

You can see the full details here, but the very basics are:

"The service will be at Grenoside Crematorium in the North Chapel starting at 12pm and finishing at 1:15pm

The service will then be followed by a gathering of friends from 1:30pm onwards at Philadelphian Working Mens Club".

Wednesday, January 26, 2011

Euthanasia Kits. Joke or Tragic Truth?

What Do They Know? is a fascinating website. You can submit Freedom of Information requests through it, and view the requests submitted by others, as well as the responses from the various public sector organisations. So you can do a search for, say, work capability assessment and see all the requests and responses made through the site, or search for your local area, or hospital, or a government department.

But when someone sent me a link to this FOI request to the DWP about euthanasia options for those who are removed off DLA / ESA I assumed it was going to be a joke. It turned out, in fact, to be horribly, chillingly apt.

The request by Stuart Wyatt begins,
With your department aiming to remove the benefits from 25% of DLA
claimants, and deem 91% of ESA claimants as fit for work, please
could you inform me what provisions have been made for those
disabled and sick people to choose a quick and painless death in
preference to slow and painful death by starvation, neglect or
and goes on to ask whether ATOS will therefore be providing suicide kits.

The same man has made a video of telephone calls to ATOS asking for the same information.

It would be funny if it wasn't so damn true.

Back to the Freedomof Information request, the DWP have to reply by the 21st February, so do check for their response.

Monday, January 24, 2011

Sunday, January 23, 2011



Mozaz, aka Mark Wallis, was angry, unpredictable, stubborn and inconsistent.

But he was also passionate. And way more sensitive than many people gave him credit for. He was supportive, when he liked you, though whether he liked you or not could change at a moment's notice. But when he was on your side, he would back you up every step of the way, whatever the kind of support you needed was. Emotional support, practical support, and advice. He offered, and he meant it.

Mozaz was a great photographer who, like me, didn't see any contradiction in finding beauty as much in abandoned, derelict buildings as in the rolling countryside. And he found much beauty in both. He adored Sheffield and was certainly one of its characters.

And Sheffield, despite itself, will miss him.

As an anarchist, and a troublemaker, and with strong feelings about almost everything, he was often to be found at demonstrations and protests. As a person he found solace in hugging trees, he wasn't ashamed to admit he cried.

The last time I saw him he was proud to have spent the past few hours in a police station. He felt proud that he was considered to be enough of a threat to the state to be worth arresting. Before being released without charge he had made sure to inform all of the coppers of their union rights, urging them to seek advice about whether they should be enforcing fascist government policy. He was exhausting to be with. Everything had the potential to make him rant, often in unexpected ways. But there was an anarchist rave hidden behind every possible situation which could arise, and he never failed to provide it. He was a prolific blogger and was @ur32daurt on twitter.

Mozaz was hard work, but if you looked beyond what was immediately visible he was sensitive, supportive, intense and warm-hearted.

He died in the early hours of this morning after a time in Intensive Care with pneumonia. Through the last few days, since becoming aware of his being ill, I kept hold of the fact that he was surely indestructible. But sadly this proved not to be the case, and he has left this city a little quieter, he has left the police force with a little less work to do, and he has left many people, myself included, reeling.

I'm going to miss you Mozaz, you mad bugger.

Monday, January 10, 2011

52 Weeks, 52 Letters Challenge

I love writing letters and cards, and I have phases of doing lots, then not doing any for ages.

The 52 Weeks, 52 Letters challenge for 2011 has inspired me. I aim to write a letter or card each week this year.

What a lovely challenge! There's nothing quite like receiving a hand-written, personal note from a friend through the door, and I hope I can bring 52 smiles to others throughout the year.

Thursday, December 16, 2010

Don't Be On The Giving End

Oh dear, it doesn't matter how many times we talk about it, and my goodness we talk about it a lot, it happens again and again.

Last Christmas we were told to not be a rape victim, earlier this year we were told that it was because of what we wear, and that half of Londoners surveyed thought there were times that rape was the victim's fault, and these are just the tip of the iceberg.

So, in time for Christmas, Hambleton and Richmondshire Community Safety Partnership have launched a 'hard-hitting campaign', advising people to not be 'on the receiving end' of domestic violence during the festive season.

I am struggling to see their logic. Is it aimed at women who they believe were somehow planning to be abused, yet on seeing the poster they will see the error of their ways, and decide against it? How else can it be understood?

Raising awareness of domestic abuse is very important. The quote provided makes good points: “Christmas is meant to be a happy time for families but for many living in our districts it will be a time of fear and pain,” said Sarah Hill, Director of Independent Domestic Abuse Services.

“The pressure builds up as people spend more time together than normal - which can often be a flash point for abuse. But we are here and ready to help – to listen or to provide some shelter.”

But how does this equate to the victim blaming, completely missing-the-point poster.

If anyone is going to urge anyone to do anything, we need to urge abusers not to abuse. It is so screamingly obvious that it frustrates me immensely that we have to write about this again and again and again.

Nobody wants to be abused. A woman seeing a poster telling her not to 'be on the receiving end' does not stop her partner 'being on the giving end'. It may just make her feel even more powerless and vulnerable.

Provide helpline numbers, sure. Provide advice and support, absolutely. But point the advice in a way that does not make it her fault. In a way that does not put the onus on her to not be punched or kicked or raped.

Because believe me, she already does not want to be on the receiving end. She does not need a patronising poster campaign to tell her that.

If you are experiencing domestic abuse, please call the National Domestic Violence Helpline on 0808 2000 247, or find a service local to you through the Women's Aid website.

And remember, it is not your fault. Ever.

I wish we did not have to keep saying this, but as long as people keep putting out information like that, we will.

(Cross-posted at The F Word)

Friday, December 10, 2010

Disability Works, Does It?

Companies like A4e, who are paid by the government to get benefit claimants into work, are treated with at best suspicion, and at worst fear and loathing, by many disabled people, especially following TV programmes such as Benefit Busters.

The DWP currently have a shortlist for other companies who are bidding for contracts to carry out government compulsory back-to-work schemes, and worryingly one of the shortlisted companies is the dreaded ATOS, who carry out the ESA medicals, and G4S (formerly Group 4 Security).

However, apparently also on the shortlist, according to, is a consortium consisting of a group of 7 charities, who have called themselves Disability Works UK.
Disability Works UK is a collaboration of national third sector disability organisations including Leonard Cheshire, Mencap, Scope, Mind, Action for Blind People, United Response, Pure Innovations, Advance UK and Pluss.

They boast about their £654.4 million turnover, and cash surplus of £15.6 million, which makes me feel a little queasy. As someone who has donated to more than one of these charities in the past, I will certainly never do so again if that is going to be used in a bid for them to gain their place in what is one of the most oppressive parts of the government's new benefit regime.

For charities and voluntary sector organisations who have done some campaigning against the punitive measures put in place within the benefit system, to now want to play an active part in that system, is disturbing. For them to use money donated by people in good faith as part of that, sickening.

And where does it leave our chances of major disability charities campaigning on our behalf against punitive benefit reforms? If they are hoping to profit from the legislation, I cannot see how we can expect adequate support or representation from them.

If Mind, Scope, Mencap, Leonard Cheshire et al win these contracts, will these charities, who are seen by many as the voice of disabled people, be playing a part in benefit sanctions? Will they be working with ATOS as colleagues? Will we ever trust them again?

(cross posted at Where's the Benefit?)

Wednesday, December 08, 2010

DLA Consultation: The Internet Responds.

Yesterday, Where's the Benefit? posted Broken of Britain's response to the DLA reform consultation, and today I am going to try to read the government's consultation document itself.

Other disability blogs and websites have already done some great posts on this subject, and I wanted to draw attention to some of what is being said around the interwebz on the reform proposals.

Fighting Monsters writes From DLA to PIP - a consultation begins.

Arbitrary Constant writes DLA Reform Consultation: Great Expectations, Worst Apprehensions. write DLA claimants to miss out in benefits shake-up.

Disability Alliance write Government announces cuts to disabled people's support as "new test".

Left Foot Forward writes Supporting Disabled People Not Sustainable says Coalition.

Disabled People Against Cuts have a cartoon entitled Don't worry when we want your opinion we'll tell you what it is.

I don't know whether I'll be able to make my way through reading the consultation document myself without breaking things and / or having a complete meltdown, but if I do I will try to summarise it in a blog post when I have.

(cross-posted at Where's the Benefit?)

Wednesday, December 01, 2010

Cold Weather Payments

For those readers on qualifying benefits, you can check whether or not you are yet eligible for any Cold Weather Payments on this direct gov website.

Payments are made when the average temperature for where you live is recorded as, or forecast to be, zero degrees Celsius or below over seven consecutive days.

Also from, who qualifies for Cold Weather Payments:
If you are in receipt of Pension Credit, Income Support, Income-based Jobseeker's Allowance or Income-related Employment and Support Allowance (ESA), you may also be able to get Cold Weather Payments.

You get £25 for each seven day period of very cold weather between 1 November and 31 March and it is paid automatically, you do not need to apply for it.

So, if you want to check whether you are due to receive one, you can do so here.

Cross-posted at Where's the Benefit?

Thursday, November 04, 2010

Round-Up Post

There are plenty of must-read articles and blog posts which I haven't had the time or the spoons to cover. All of the following are well worth a look.
  • Scope are running a survey about the real costs of being disabled, which you can fill in here.
  • "On the Shoulders of the Vulnerable", an article from Morning Star with information about ATOS and how ESA medicals are failing disabled people, especially those of us with mental health problems.
  • A Guardian article, Housing Benefit Cuts: What's the Real Truth?
  • Laurie Penny in the New Statesman writes Strictly Come Scrounging, Anyone?, about The X Factor vision of society [which] blames the poor for their predicament.
  • Hopi Sen and Left Futures point out the contradiction in David Cameron criticising those claiming over £20,000 in housing benefits, compared to his own expenses claims for his second home.
  • Crisis, a national charity for single homeless people, have created a comprehensive, myth-busting press release full of information on how the government are 'peddling myths' to sell the Housing Benefit cuts.
  • Lenin's Tomb deconstructs a Daily Mail article decrying 75% of Incapacity Benefit claimants as 'fit to work'.
  • The same article is looked at on This Is My Blog, who looks in depth at 'abandoned claims' and why they might really happen.
  • Susannah posts a plea for help, describing how the removal of the Mobility Component of DLA from people in residential care will directly affect her brother.

(Cross-posted at Where's the Benefit?)

Sunday, October 24, 2010

Video Follow-Up

I've had such amazing support since posting the video yesterday. I also wanted to let you know that it has been re-posted at various places.

Mind In Flux posted it on her blog about mental health and disability.

The Broken of Britain is collecting the stories of disabled people in the UK, and has linked to the video.

And it has also been posted on Pickled Politics blog.

I am touched and moved that so many people have contacted me, and commented, in such a supportive way. It was a very scary thing to do, but it also felt very important. Thank you everyone.

Saturday, October 23, 2010

Vlog Message to You.

In response to the wonderful words of BendyGirl.

[Edited to add a transcript of the video:

The last few days I've watched the videos from BendyGirl at Benefit Scrounging Scum, and I loved them, I thought they were brilliant. But I never thought it was something I could do, until in her second video she pointed out how important it is for everyone to speak out.

Like many, many people I am frightened by the proposed changes, the cuts, to disability benefits, and what's going to happen to services and the third sector.

The thought of withdrawing mobility rate... the thought of withdrawing the mobility section of DLA for people in care homes is disgusting. The thought that just because somebody was living in a care home, they no longer need to go anywhere, they no longer need mobility equipment, is just obscene.

The changes in housing benefit rules so that people under 35 in private rented accommodation can't get full housing benefit if they live on their own is disgusting.

And limiting ESA to one year, when so many people were fighting against the very principle of ESA at all, and now to have to change that fight to at least, it was perhaps better than nothing, and if people are going to be put on it because they are considered fit to work, even though we know that many, many people who are not fit for work are being put on ESA, the fact that that's now limited to one year, and nobody seems to know what would happen after that.

When we are in a recession, and people – everybody who isn't working is finding it difficult to find jobs, and the strange assumption that the few jobs that there are will go to disabled people, is just not unfortunately how this society works. Disablism means that disabled people are discriminated against every day, and that includes the disabled person who is well enough to work can find it more difficult to find that job because employers are frightened, or don't want to make changes, or don't know what it means.

I'm frightened. And I'm also, like many other people, very confused. I watched the budget on Wednesday, and I was thankfully using twitter at the same time because there were many aspects that I didn't understand, or that I thought I must have misheard. And that there was a group of us all watching and using twitter at the same time made it more accessible to me, I guess.

But there are many unanswered questions. I've heard of people ringing the DWP to say, 'What's this about ESA being stopped after a year?' and the DWP not being able to answer, because they don't know.

The Housing Benefit cuts, I've heard so many different stories about who it's being cut for. So it's not just that the changes are frightening, it's that they're very unclear, and people don't know where they stand.

When I first became ill and went on benefits, I just got Income Support, and it was a horrible time. With paying part of my rent out of that, and with making debt repayments out of that, I had £15 a week for food, and electricity, and transport. For months I lived on... I used to buy these tins of Irish Stew from Kwik Save, and they were disgusting, but they were really cheap, and I figured it was as close to a balanced diet as I could get because it had meat and potatoes in it. And for months, every day, I had one meal a day, and that consisted of Kwik Save Irish Stew and as much bread as I could eat. Every day. For months. I couldn't afford sanitary towels, I couldn't afford shampoo.

I didn't know about other benefits. And someone told me about DLA and I applied for it, and I eventually got it, and it was one of the key... it was key for me, it was vital. Because my health was bad enough anyway, it was vital for me because I could afford to eat more than Irish Stew. I could afford to go to places on the bus. And I'm talking medical appointments. Before that I was missing medical appointments because I couldn't afford to get there. I could get taxis. I could get ready meals when I wasn't well enough to cook.

Getting DLA literally changed everything for me. And makes, still makes, such a difference. It means that I can afford the extra things I need because I'm disabled. Like taxis. Like ready meals when I can't cook. Like mobility aids, and other aids I use. DLA, along with everything, is being threatened. With ATOS taking over the medicals. And after what they've done with the ESA medicals that's frightening, and many people who need DLA are going to lose it.

Everything that is happening since the new government came in is frightening to disabled people. And I'm not a Labour supporter. I know that various important Labour politicians have come out and said that they would be doing what the Conservatives are doing with regard to disability benefits. So I'm not falling into the trap of saying, 'the coalition government is awful, Labour is the answer', because they are... although they are fighting some aspects of the budget, they are supporting the disability benefit cuts.

I feel like I'm being punished for being disabled. The press and the government are doing a really good job at the moment of whipping up hatred, whipping up this image of disabled people being scroungers, of disabled people not really being disabled, and being workshy and lazy. The government and certain parts of the press are promoting this strongly and I can feel, in the atmosphere, that this is affecting people's views. And with the further cuts, this gets worse and worse.

What depresses me is not my illness. What depresses me is not my impairment. What depresses me is how I am treated because of it. That's what makes everything so much harder. We do need to speak out. Because disabled people are being scapegoated and it's horrible. And for non-disabled people, you don't know what's round the corner. I became disabled. Many people become disabled. It could be you in a few years, with no care packages, with no benefits, with no support. With people thinking... with people thinking you're lazy or can't be bothered, or exaggerating. Nobody's immune from disability. And there are some people in the government, the Prime Minister included, who really should know that through their own lives. I am so... I'm frightened, and I want to give a message of hope, but at the moment it's hard to find one.

So I'll agree with BendyGirl that the hope... maybe we have to get hope from each other... from knowing it's not just us, it's not just me that's frightened, it's not just me that's confused, who doesn't know what's happening and what's going to happen.

We're all in this together.]

Friday, October 08, 2010

An Easy Way to Email your MP to Protest Benefit Cuts.

Scope are running a campaign to email your MP to ask them to take action immediately to oppose the cuts to the public services and benefits that many disabled people in the UK use and rely on.

All you have to do is fill in your contact details, then your MP's email address is automatically found and you can read and alter the proposed message before you confirm that you would like it to be sent.

So, email your MP to protest the proposed cuts here.

Cross-posted at Where's the Benefit?.

Thursday, September 30, 2010

Threats and Fear.

It's impossible to overstate how terrified some disabled people are, in Britain right now.

The fear of benefit cuts is so high, and so real, and attitudes like those of Nadine Dorries add to the climate of terror.

Already people are scared to leave their house for fear of being reported to the DWP for faking their illness, now those who find networks like twitter to be a lifeline are becoming frightened to post.

If you are stuck in bed, and you've found a way to use your laptop lying down, or you can use a phone or iPad, sites like twitter are perhaps the only way for many to actually communicate with others. It may be the only conversation someone has for a week.

One purpose that these threats serve is, I suspect, to keep us all quiet. We can't complain about the process of reapplying for DLA, or of the ATOS assessments, if the very complaints we type will be used as an additional stick to beat us with. Even if typing those 140 characters used up so much energy that we then had to sleep for an hour to recover. Or hurt our eyes so much that we have a migraine for 3 days.

On days that I can't leave the house, and can't use the phone, the internet is the only tool I have to communicate with the outside world. I don't want to lose that. But the fear affects me as much as anyone, and right now so many of my outlets feel threatening.

This is what the threats to disability benefits are doing to me. It is worsening my madness significantly, which, ironically, will make me less and less able to work, not more.

(cross-posted at Where's the Benefit?)

Tuesday, September 21, 2010

Being Offensive To Show How Offensive Offensiveness Is

DSC_2777ed1 The Press Complaints Commission has upheld Clare Balding's complaint after AA Gill in the Sunday Times referred to her as a 'dyke on a bike'.

This is really good news.
Balding said the word "dyke" was "too often used as a pejorative and insulting term". She said her sexuality was irrelevant to the programme and the hurt had been compounded by the columnist's mock apology for previously saying that she looked "like a big lesbian".

As you might expect, Stonewall has released a press release on the judgement, however it has used offensive and racist language in that press release to make its point.

Using racist language, to highlight how bad homophobic language is, is never the way forward. Holly's post on Oppression Olympics explains this clearly, and insulting Meera Syal and Vanessa Feltz's ethnicities is as offensive as the original AA Gill comment. Doing this in the guise of supporting a decision against offensive language is ridiculous.

I don't want to directly quote the language they used, but the screenshot above of the press release will show you what they said. The 'P' word in particular is one which makes me feel sick. Using it as an example of what The Sunday Times would never have said is misguided at best, and I do wonder what Ben Summerskill was thinking when he thought this was appropriate.

There is an option to comment on the page of Stonewall's press release, and if you too find these references unwise and offensive, I would recommend you do so.

Story originally heard through @becksydee. Photo by me.

(cross-posted at The F Word)

Wednesday, September 01, 2010

Spam Comments

I've lately started getting a lot of spam comments on my old posts, so I've been deleting them as they come in (Hint to spammers, don't bother writing a convincing looking comment for the context when your username is GenericViagra).

But as the problem is getting worse by the week I have now changed my settings so that comments left after a post has been up for 14 days will have to be moderated. Hopefully this won't be too annoying for regular or legitimate commenters, and it will save me time and energy I could better spend, I dunno, pissing about.