the times they are a changin'

Advocates of the social model will know the ideology and reasoning behind its success. It focuses on the disabling things that join people together so that we can fight on united issues and united fronts. Individual and personal experiences were resigned and deemed irrelevant and a distraction to the main cause of equal rights.

Over the years we have as a society become a lot more inward looking. This has been in part due the advent of consumer culture and technology encouraging social engagement on a personal level, as well as the so called breakdown of the family, evidenced by the increase in single person households and wide ranging definitions of what a family is and other factors.

Another massive impact that has created a massive shift in our thinking about society has been the rise of celebrity culture. As a society we have become fascinated by celebrities boring, mundane and day to day lives. Magazines such as now, more, heat etc. have fuelled this trend for knowing everything there is to know about your favourite celebrity. Not only that, technology has enabled us to interact with these famous people on a personal level (twitter, facebook etc) and make it appear that this sort of lifestyle is somehow within everyones reach.

So, why would this have an impact on how disability campaigners best reach their audience? Surely we should still stay united (united we stand etc) and carry on with the protests and the big unifying messages of stop the welfare reform bill etc?

Well yes, of course it should continue. But by failing to recognise this shift in culture and using it to best advantage would be a disastrous mistake for the disability movement. There have been some fantastic examples recently of how well one persons story can have a massive impact within the media and on social networking sites, and probably more impact than she was expecting or had even imagined.

For the last few weeks Sue Marsh has been creating a research project and a fund to campaign against the disability welfare cuts. This has been mainly done through twitter and her blog. However, by having the 'bravery' (I use that term in the best possible way, not in a patronising way) to relay her personal 'tragedy' (again another horrible word, sorry) of how she has lost her DLA award and that due to this research project wont have the ability to fight both campaigns, shot both stories into unexpected and never before seen media coverage and it felt like the internet had finally awoken to what the disability movement was actually saying.

In the last few years, the broken of britain have also used stories to effectively engage people into thinking differently about disability and the impact that cuts in services and benefits will have on people. There have also been high profile stories seen in the media of people who have died supposedly at the hands of welfare reform. These stories reached national papers, the hardest hit rally in october, and the christmas card signing reached the local news. Should we not take from this that the future lies in combining big campaigns with personal stories in order to effectively get the message across?

People don't want to see faceless campaigns anymore, the cultures changed. Disabled people need to be brave enough to tell that horrible story about their personal experience of being discriminated against, or having their benefit taken away from them. But they also need to combine it with how people can take action.

Society has become nosey, so disabled people need to let them nose around, and let people know what its like to walk in their shoes, and refer them back to the big campaigns such as the hardest hit and pats petition and writing to mps etc. so that hopefully things will change.

There is still a place for the big and far reaching campaigns, as the way society has organised itself hasn't changed. IE In order for change to happen, the power still lies within the political and law making processes in government, and in order for individuals to engage in that process unification under a big organisation is still an essential tool of campaigning, but it is in how disabled people engage others to join in that has changed. It is no longer enough for these campaigns to exist and for people to see how wrong society is, there needs to be an additional personal element to it all.

So how does this all equate with social model ideology that says our stories are irrelevant to making changes happen? I think that it still has a place within all this 'new thinking'. It is important to focus our stories and personal experience into that ideology, and not to fall into the trap of personal tragedy and more 'medical model' story telling. Sue Marsh did that beautifully, in combing her medical conditions with her fight for her own DLA, as well as others, the focus isn't on her medical conditions, or her 'overcoming adversity' to campaign, but the coverage has equalised all three areas of her life transforming what could have potentially been a 'woe is me' type story into a negative account of her DLA appeal (personal), a neutral account of her conditions (personal) and a positive account of her campaign (political). It feels like each bit has neutralised and balanced out the other.

I think we need to learn from this, and take advantage of how much of an impact it has had, by keeping the pressure on, and keep telling similar personal stories to the newspapers. I have been talking to one about my story, perhaps others should do the same?

fairytale of the uk...

 had to be done...

It was Christmas eve dave

In ten downing street

And you said to me, we wont see another one

And then you sang a song

They wont care about you at all

I turned my face away

And thought the same thing too

Got in the lucky way

Didn’t get elected at all

I’v got a feeling

We screwed them me and you

So happy Christmas

I love you baby

I can see a better time

When all our dreams come true.

We got cars big as bars

And rivers of gold

But the others got nothing

The uks no place for the old

When you first took my hand

On a warm summers day

You promised me

The welfare system would stay

You were handsome

You were pretty

King of conservatity

But when you finished playing

They howled out no more

Lord Osbourne was swinging,

All the Cuts they were coming

All the bankers were laughing

then danced through the night

The boys of DWP conspired

N were singing “frauds will pay”

And all the papers printed owt

That fateful day

“You’re a fraud”

“You’re a scrounger”

“You’re a benefit scum”

Lying here, there and wherever theyl listen to some

Disabled are lying,  not worth a dime and

Their a drain on all systems and of course its their fault

They could have been someone

Well so could anyone

We took their dreams from them

When they first signed on

Signed over our soul

And swapped it for the dole

Can’t make it out alive

And all our  dreams have died there too.

http://www.lyricsfreak.com/p/pogues/fairytale+of+new+york_20109730.html

I feel..

I don't know why I am writing this to start with. I am sure it will be deleted and edited many times before I am happy, it might not end up being published. It is about some struggles I am having with religion, which I very much separate from Christianity, which is about my relationship with God. Religion is the systems in place on earth that seems to generally work against that (or it feels like it anyway). but if you don't want to read it, I understand.

I don't know how many people read this, or people who are aware of my creativity. I tend to keep things in my life pretty separate to help me cope. But I am struggling with this and feel the need to get it out there.

I don't want to name names, because I feel it would be vindictive and wrong. This is more about my experiences over the last few months and how it has left me feeling.

I feel that my creativity is a gift from God, and that it not only helps me cope with my life, but it is of use to others and I share it when I can. In all areas of my life this is the one area where I can confidently say I am good at something. I have no self esteem, and no self confidence, but in my creativity I find some kind of peace.

I take care not to boast about it, even to the point of acknowledging God within my copyrighting and watermarking. I also take care to use it whenever the opportunity presents itself, especially within a christian context. Which is unfortunately where my pain comes from.

I was presented with such an opportunity a few months ago. I designed something within a christian context and with the purpose of being mission focused. Firstly, my efforts were ignored and dismissed, which was later put down to 'computer error', and then later copied and reproduced without my permission. Despite the obvious illegalities of this action, it hurt me beyond belief.

If I could explain the process I go through when I create it is as though the pain and hurt is transferred from within me onto the computer and the pages in front of me. It is a healing process. When I create I can block out the world and the stress and forget it all.

I think that in copying the work, all that pain and stress re entered me and at a greater force than it left me. I felt violated and used, I am still utterly devastated that a christian organisation can act like that.

I would normally either walk away from all of this in an attempt to move on or react in a really bad way and regret it. But this time, I did what I thought was a constructive and positive thing. I made a complaint.

This complaint dragged on for about 2 months, during which time I lost contact with my new found friends within the organization in question, and continued to feel hurt and pain. It was very hard for me to feel creative and took a lot of self control not to resort to my usual choices, but I did it.

About 2 weeks ago, we got to the point where we all sat down and talked. We resolved our differences and I put forward an idea that would help me move forward. In the process of making the complaint I realised that all this hurt and pain wouldn't go away unless I forgave them, and made peace with them. I have done that, and yes, it really helped. Unfortunately, the solution that I offered has since been rejected, which has plunged me back into darkness.

I was willing to forgive them, I was willing to continue working with the same group of people despite being hurt so badly. I sincerely believe that it is God's will that this happens, because I keep drawing more and more stuff that could be used by them. But I can't work with them without a written agreement. That was the solution I offered and the one they rejected.

As an artist and a photographer I work on the basis of trust mainly, especially within christian organizations. But if that trust is broken I find it very hard to keep trusting them, and will insist on an agreement of my terms for my protection. It is not about money, because my work is usually free, but about my sanity and working within clear boundaries and rules. The only other time I will insist on a written agreement before anything creative is between friends, because it stops any fallings out over petty things and makes things nice and clear.

I feel horrible now. I don't know a way forward. I feel like I am offering an olive branch and they are ripping it up. I feel the anger and the pain creeping back in and its stopping me working. But how can I move forward and make peace with them when they wont move from their position?

Im stuck and I need to move forward, but they are blocking my path. What would you do? Do you have any ideas?

thanks

Lucia

Who is defrauding who?

EDIT: http://www.dailymail.co.uk/news/article-2075861/Pauline-Ford-58-saved-22k-nest-egg-benefits-pay-back.html

This is exactly the same as me. If she had recieved decent care, and decent advice and had a decent life she shouldn't be in that mess. She shouldnt have been in the first place. (by the way before anyone jumps at me, I have declared...)

I'm going to be controversial for a minute, so please look away now if you can't cope :).

I have often thought, and been quite embarrassed about the fact that even though I have been on benefits for the last 6 years because of sickness, and disability, I have quite a lot of savings.

Before this point I was labouring under the guilty illusion that I had in fact got too much money and must be in some way committing fraud. But as of today I have finally realised that it is not me doing the de frauding but the system that is defrauding me.


I don't want to go into detail about the heirarchy of disability, just to say it exists, and mental health conditions are at the bottom of the heap. Not only that, aniexty, panic and trauma based conditions are at the bottom of the mental health heap. Despite being the 'easiest' to stabilise these are the conditions that are the most like to not recieve any help at all from the NHS.

Actually I apologise, thats not true. We do recieve help from the NHS, but its an arbitrary set of 20-30 sessions of talking therapy regardless of the severity and extent of symptoms. As the 'solution' is not drug based we are not considered amongst the more 'serious' mental illnesses such as bi polar or schizophrenia. People with those conditions are covered in care from the mental health teams. They have access to care plans, social workers, crisis intervention, etc etc. I am not denying their experience, but merely comparing it to my own. I have been told on many occasions that my condition simply doesn't fit within the service so therefore they don't do anything for me.

My condition is one of the easiest to treat, but shoving pills down me is actually quite dangerous. Long term, intensive talking therapy is the only solution. Which is the snag, as that costs money. Alot of money. But then if you counter that with the number of police interventions (because no one else would keep me 'safe') and the amount of benefits I have received because I am not able to get better and get working or at least contributing to society then I am sure it would be cheaper.

Which brings me back to my original point. Simply shoving money at me through the benefits system isn't actually helping me. I don't have the means to spend any of it. Without access to decent care, treatment and therapy then most of the time I am sat at home (when I am not at uni, yes I study, but part time and its an uphill struggle) on my computer, with my cat. I dont spend much on food because I can't cook elaborate meals, and rely on a microwave. I just don't have that many things I can actually spend the money on, which is how I have ended up with savings.

So yes, although it might appear that I am defrauding the government, actually they are defrauding me of the care and support I need to get well, and in turn defrauding themselves of someone who could within a few years be well enough to be in the system and helping to change it for the better.

Rant over, I feel better now.

DLA has to change...

When I read about Sue's DLA it made me realise that the current system needs to change. But we must be careful, because the change that the government is proposing is a whole lot worse than the current system.

Under the current system I get higher rate care and lower rate mobility. This might surprise the people that think they know me, but to the people that truely know me understand the reasons why.

Under the new system I doubt I would get anything. They mention getting therapy in the new descriptors, which is something I use my DLA for. But they mean home based therapy. So does that mean I will have to have it at home instead just to qualify?

It also uses ones ability to plan and carry out a journey as a signifier of wellness, but to me thats a sign of sickness. I would love to be able to make a journey without having to plan 5 different ways of achieving that journey, and knowing all the bus routes and their timetables in the city just so I am comfortable enough to travel around. but i can't. It keeps me safe to have this information. Without it I would freakout and panic.

so, whats wrong with the old system? Well I think Sue's DLA highlights whats wrong with the system. It is inconsistent and decisions are made without any sense being applied to them. Claims are regularly turned down just so that only the 'genuine ones' (in the eyes of the government ie. or those who are able to fight) will bother. It is truely a lottery.

So, whats the answer? What makes sense to a disabled person as an answer might not make sense economically. But then, following that argument, by taking away someones DLA doesn't make any economic sense either. DLA enables people to work, and contribute to the economy in other ways such as volunteering, education, campaigning etc. Without that financial stability that comes from DLA I know my world would crumble. My care isn't funded by the state, and my condition isnt understood by the NHS. I am sure I am not the only one who could lose the ability to live independently.  At the moment my rent is 60 pounds a week on housing benefit. If I were forced into living in supported housing that amount would at least double.

this reminds me of a blog post : http://benefitscroungingscum.blogspot.com/2011/04/stitch-in-time-can-sometimes-cost-you.html

I don't know what the answer is but i know it isnt this....

Theory doesn't make the pain go away, but it explains why its there in the first place

I learnt about this theory during my course the other week. It basically says that even the most hardened disabled person will still have emotional side effects of being a disabled person, and if you look through the world with the social model lens then when the world discriminates against you.

I learn the theory, I can even even think of times when its happened to me, but then when it happens again no ammount of rationalising the theory makes the pain and hurt and guilt and blame etc go away.

Even though I know and I believe in the social model, when someone discriminates against you whether indirectly or directly because of your disability and impairment you still blame yourself and not society. And that is the essence of the pyscho emotional effect of disability.

It happened to me tonight, and its not even something that I ever found to be particularly disabling before, which makes it harder. I was at an event which was being held outside. There was a number of different factors that were at play. My knee hurts due to a lack of exercise (mental health and depression related) so I was struggling to stand up, my general low mood, being suspectable to sensory overload, and crowds but the main issue is my under active thyroid. This makes me sensitive to the cold. I tried, I really did try to stay outside. but then it got so bad I couldn't stand it anymore, i needed to be warmer. My first reaction (luckily) was to go and get a bus home, but I talked myself out of that because I was with a friend and thats just not fair.

So i reasoned that if i went inside the venue for 5 minutes to warm up, that I could try again. so, thats what I did, or at least tried to do. A steward blocked my way. I said but you don't understand I NEED to go inside, he repeated again, no sorry you can't. So I then (luckily I had 'bus plan' in my head) said I'l go home then.

I say luckily at this point because it tripped my brain into that plan of getting me home. If that plan hadn't have been there already I feel sure I would have collapsed because I experience stress related blackouts, especially when I have reached my limitations and, well in situations like this.

I am now beating myself up for this, despite the perfectly rational logic that I know its not my fault, and its their fault and it shouldn't have happened. It has left me feeling low again, and fragile. I can only explain my mood as walking on thin ice, I am ok as long as I am careful and don't put too much stress on the ice, but as soon as I slip or fall in i realise how fragile I am.

I feel bad for my friend who missed the event, as for myself. I feel bad I didn't say something else, i just feel horrible.

and I am a third year disability studies student who has just learnt about it in theory. The theory doesn't help in the practical application though... it just might make it slightly easier after the event to reflect on it.

Theory doesn't make the pain go away, but it explains why its there in the first place.

hardest hit, my thoughts

This is a blog in response to the questions raised about the hardest hit campaign. 

http://wheresthebenefit.blogspot.com/2011/12/hardesthit-jedi-mind-tricks.html

I can really understand what it is that concerns people about the wording of the Christmas card and the way in which the charities have seemingly taken over. If we look back into recent disability history, wasn’t this how grass roots disability campaigning took off? Were they not sick and tired of charities hijacking their lives for their own purposes? Did they not do something about it by organising their own movements?

And so we see the start of this happening all over again, the D.A.N has re started as a result of the cuts, and the increased conciousness in disabled people. I went to the hardest hit rally in Leeds, which inspired, encouraged, motivated and spurred me into action. As a direct result of that I have got involved in my students union and more disability campaigns.

The hardest hit is a high profile campaign because of the charities behind it. But before they had their Christmas card there was a bunch of people on twitter doing the same. There are other campaigns that are starting up as well.

The hardest hit campaign is engaging with the mainstream by using mainstream language and mainstream charities. It is uniting disabled people under a banner, but let this just be the start of the revolution, not the only revolution. After all it is the disabled people who are fighting for their survival.