Showing posts with label blogging against disablism day. Show all posts

Bloody Skegness! Blogging Against Disablism Day #BADD2015


When I was a young adult..

At first I was fairly scared, because I didn’t know what I wanted to do because I couldn’t read or write. My special school didn’t teach me to read and write, they only found out I was dyslexic 2 weeks before I left school. I be honest, I didn’t know what I wanted to do when I left school, because nobody ever asked me what I wanted to do. The only thing I could do was retail work.

I went to college first and I didn’t enjoy it because I couldn’t understand things right because of my reading and writing. Then I went on a YTS scheme and they put me on a retail course, it was very difficult to do it. I didn’t have proper support for my reading and writing. I felt very down a lot because I didn’t know what job I wanted, no-one ever asked me, no career day, none of that. I didn’t know what I wanted to do. It got more clear when I was older, when I started living at Keyring. Before that I lived with my brother for quite a long time. At first it was ok, but over time he took over everything like bills, he even banned me from my own kitchen in case I burnt something! He did all the cleaning and cooking. I didn’t like that and I wanted to do it. It made me feel frustrated and angry to not be able to look after myself. My brother worried I’d lose my money or spend and not have any left to pay the bills. I would never do that, but he didn’t have the confidence with me to know that and it was very frustrating. Me and my brother was arguing a lot about, I wanted to live on me own and an advocacy organisation called ROP told me about Keyring. I wanted to live on my own and to learn to be properly independent without anyone taking over for me.

When I was about 30 I started to be able to dream of a life like the one I have now…

At first living on my own was fairly scary. I had a great support worker – he helped me to do an action plan to work towards what I wanted to do, like budgeting my money, going shopping, going to the bank and other everyday normal things. My support worker and other managers in the network would support me at the time I moved in, but over the years I got used to it bit by bit. It was tough at first but bit by bit the support worker, the manager and my mother and my friends helped me to be the person I am now.

The hardest part was…

People’s attitudes. Some of my family were worried I couldn’t do it, because before I couldn’t live on my own, have a proper job or kids. Now I live on my own, I work and I see my daughter.

If you want to live independently…

Have faith in yourself, if you get the right support like I did it can be done. The best people to support you are people like myself who have been through what you have. People with learning disabilities can be very good support workers; I supported children to go to the bank, they wanted to open their account but they were scared. I did an action plan with them to build their confidence up. They couldn’t do it overnight but I supported them step by step and now they help other people with learning disabilities to learn the skills they want to. I didn’t know how to put plugs together, one of the gentlemen I supported taught me to put a plug together. Everyone has got skills, but often they don’t realise they’ve got them.

When I was young, when I was living with family and having to do a course without support, I never dreamed that one day I would be planning a holiday on my own to Thailand – I would’ve been lucky to get a daytrip to Skegness! I hate that place, its shit. I had to go there a lot – it’s like watching paint dry, bloody Skegness.


By Shaun Webster, supported by Kaliya Franklin 

Hard Working Species, The 'Striver Scrounger' #BADD2014 Blogging Against Disablism Day 2014

"I never thought I would hear you say that, I'm so proud of you" was LovelyCarer's (slightly teary) comment last week when she overheard me saying that I couldn't wait to go on holiday to have a break from work. Today is May Day, International Worker's Day and of course, the 9th annual Blogging Against Disablism Day hosted by Diary of A Goldfish. It's the 8th BADD I've taken part in, and reading back through my old blogs I was reminded of how much has changed over the past decade - coming to terms with disability, learning to life a life with disability that is full and rewarding, the removal of the security part of social support and just recently, starting my first paid employment since 2003.

It's been quite a journey! Whatever the politicians may say about not letting people fall out of the workplace, or that unemployment is bad for your health, for me, without that ten years of secure support I would never have managed to learn to live with my disability, let alone consider volunteering or working. The first few years I was in shock, then there were the years I had to learn to become an expert in Ehlers Danlos Syndrome, and all the associated skills needed to manage an unpredictable, rare condition. In 2007 I started blogging as a way of reaching out to other disabled people in similar situations. In the back of my mind was always the vague idea that blogging would be a good way of discovering whether I had any talent as a writer, that maybe it might lead somewhere, but it was a fun and interesting hobby which helped with being so isolated. Gradually I started to learn more about disability, about communication and became more interested in the emerging social media platforms. Somehow, without really realising I developed expertise about disability rights, how to use the political process and various media tactics.

Then, last year there was a profound change in my life. After a 14 month battle with the local authority I finally received a direct payments package sufficient to meet my needs and was able to employ a PA. Suddenly instead of spending every day with my primary focus being how to manage to eat, having a PA to support me meant being able to raise my ambitions. I can't overstate the importance social care has played in this, without it I would be straight back to putting all my time and energy into managing the most basic needs, and all the progress I've made, including employment, would be lost. The nagging fear that eligibility criteria will change, or further cuts to social care will mean a reduction in support never quite goes away, coupled with the certainty that should that happen, I will also be unable to work.

It's almost two months now since I started work as co-development lead for People First England. Enough time to have struggled through the financial implications of leaving benefits and waiting for wages and tax credits to begin. It's also been a 'too close for comfort' insight into why the use of food banks is increasing - politicians simply do not understand how, for people on very low incomes, just a week without income can plunge them into a downward spiral of debt and desperation, or how massive a barrier to starting work that can be.

I'm incredibly lucky, I have supportive friends around me who are in a position to be able to lend me money, but it is still humiliating to ask, and a pressure on friendships. I'm even more lucky to have the employer I do, as if I were working in a typical environment the challenges I've faced would have meant losing that employment as soon as I'd gained it.

I have that 'holy grail' of 'spoonie' jobs - I work from home, part time at hours to suit me. I'm supported by my employers to work remotely using Skype to attend meetings or conferences and to keep travel to the minimum. Even more than that, I have employers who remind me that if I'm not well and need 3 days or 3 weeks in bed, then all I have to do is let them know before turning everything off and going to bed.

I have employers willing to help me through the Access to Work process, which I applied for in early January and is still not sorted. Most of the equipment is now with me, and some of it even, sort of, works. However, I don't have any PA hours to support work, have no idea when or if Access to Work will ever grant those and I'm not allowed to use my social care budget for work. Social care is for social care, Access to Work is for work and apparently never the twain shall meet. Which is not overly practical when I need a PA with me at work events to do things like open doors for me, because they are social care not employment needs. Apparently the work PA (if I ever get one) is supposed to not open doors, or assist with getting me food but just be there for 'work' stuff. Stupid is as stupid does.

Access to Work is a fantastic scheme, but it is not operating as well as it could and should given that it is the only government project for which the treasury receives back £1.48 for every £1.00 spent. Huge delays in support arriving are incompatible with the realities of employment and employer needs. It is simply not reasonable to expect employers to cope with lengthy delay before someone can start work, especially within a national 'skivers' narrative and hugely competitive employment process.

I'm also not 'off benefits', I've just been re-classified as a hard working striver scrounger, which is a species of the scrounger genus never mentioned by politicians. I receive almost as much in benefits now, made up of Tax Credits and Local Housing Allowance as I did when I was out of work. However, as I also get a salary and have survived the debt and stress of the transition process I am much better off financially. This wouldn't be the case if I had had to access expensive credit from a payday loan company which most people have to do during that change-over as I would have been plunged into a debt/repayment cycle lasting months. Due to the limitations in hours I can manage to work for health reasons, even with a good pro-rata salary I cannot earn enough to support myself without those additional benefits.

I also have a job I absolutely love, which is an enormous privilege. This counters the fear that I'll never again find such an accomodating employer, and increases the pressure I feel to stay in work.

Because what isn't discussed by politicians, or the huge welfare to work industry, is that even with the right attitudes and the right support, managing to maintain employment with a fluctuating and significantly disabling condition which also causes pain, fatigue and illness is like walking a knife edge whilst juggling. There's always the risk that one of the balls will drop, and in the process cause injuries taking months or years to recover from. There will always be a lucky few who have skills and experience unique enough to make it desirable for employers to accomodate such extreme needs, but for most people and most jobs that simply is not realistic. Would Tesco wait months on end for their new shelf stacker to be able to start work? Could a school who'd employed a disabled teacher manage for a whole term whilst waiting for their support to arrive?

Of course they couldn't. And wouldn't. Why should they? If disabled people are to reach employment rates comparable to the rest of the population then there are huge changes of the kind outlined by the recent Labour taskforce report, Breaking the links between disability and poverty which must be implemented as a matter of urgency. However, as even one of the three major political parties in this country hasn't managed to understand the importance of access and ensure its availability I won't be holding my breath.

I just hope, that the next time I reflect back on a decade in my life, I will be able to say that things really have got better. Not just for a fortunate few, but for all those sick and disabled people who want employment and are well enough to manage to do so.

The Right To Live And The Right To Die - #BADD2013

There are two bills scheduled for debate in the House of Lords in the near future, at first glance they may seem completely unrelated, but in fact are inextricably interlinked - social care and assisted dying. The vast majority of rules and regulations which govern the lives of disabled people are legislated for by those without disabilities, although there are a handful of disabled Peers or MP's, these two bills are no exception from that dissonance between those who make rules and those who have to live by those rules. 

 Social care is currently in a precarious state - a system that was already stretched to breaking point prior to the change in government is fracturing at the seams from the cumulative impact of austerity and ignorance. When social care is mentioned in the media the primary focus is always on the care (or lack of)  provided to older people, but working age disabled people make up a third of the total recipients. Of these working age disabled people, those with the most severe disabilities who were previously able to access the ILF to match the funding provided by their local authority, will all be funded fully from their local authority, who of course will not be provided with a commensurate increase in funding from central government, but will have to attempt to accomodate this extra cost burden from within existing adult social care budgets, which are being reduced by an average of 28% by 2015.

Accessing social care as a working age disabled person is far from easy - it involves a lengthy, complex process of assessments, tick boxes and in most local authorities a pretence of choice. In reality what that tends to mean is that the disabled person only has choice and control over their life if their choices match those their social services department deem acceptable. This means that even before the full impact of budget reductions to Local Authorities, the closure of the ILF and other welfare cuts impacting on individuals and communities the vast majority of adult social services departments are breaking under the strain. Once past 2015, factoring in the full impact both of budget restrictions and the potential loss of income to Social Service's departments currently paid by charges from the care recipients DLA award as disabled people move through the new PIP assessment, which the government predict will be available to 600, 000 fewer disabled adults, the situation will become catastrophic.

So, what does all this have to do with assisted dying? Its simple - quality of life. We can all empathise on a very human level with people like Tony Nicklinson. Tony felt his life as a quadriplegic was intolerable and before he died of natural causes, he campaigned for the right to die on his own terms. For me, there is a particular, personal concern about assisted dying and high level spinal cord injury - the instability in my neck means that such an injury is more likely for me than the average population. This means I have considered how I would personally feel in such a situation. The only honest thing I can say with certainty is that I do not know how I would feel about facing the future with such a significant disability, and that I hope, but can't be sure I would eventually adjust to the situation and find a new, different quality of life. But I don't know that - it could be that like Tony I would find the situation unbearable and be desparate but unable to end my own life. 

 Despite that, I still firmly believe that legalising assisted dying in the current socio-political climate is dangerous and should be prevented. The 'social model' is a theoretical model created by disabled people to demonstrate that it is actually an inaccessible society which causes disability, not the primary, medical model based idea that impairment is caused by failings on the part of the individual, ie disease or disability. The social model does not seek to cure, but to explain that with the removal of barriers to access, participation in society increases consequentially. Although the social model can be controversial amongst disabled people, applying its inherent principles to policy making is one way of making them as accessible to as many people as possible. Improved physical access doesn't just benefit disabled people, but if done properly, everyone - older people and parents with young children.

It can be argued that assisted dying sits firmly within social model territory - if a disabled person requires access to live independently then the assistance to end their life is as much a right as the assistance to live their lives. But therein is the inherent problem with both social care and assisted dying - there is currently no easily enforceable, statutory right to the care, equipment and financial assistance disabled people need to live a truly independent life. Within a rights based framework the right to die would fit alongside the right to live - after all being born and dying are the most natural part of any human life and with the correct assistance disabled people can be enabled to make that choice for themselves just as they can be enabled to parent, shop, swim or work.

This brings us back to issues surrounding quality of life - with the correct support to live an independent, self determined life disabled people can make their own value judgement on their quality of life. However, with many disabled people no longer qualifying for welfare benefits or social care that quality of life is impaired by not having the right to the support needed to live independently. It can be argued, successfully I suspect, that without that right being present there is an element of duress in every situation that might lead to assisted dying. As Lord Scarman described so well in relation to economic choices within contract law;

 "The classic case of duress is, however, not the lack of will to submit but the victim's intentional submission arising from the realisation that there is no other practical choice open to him"

This element of choice is critical, especially within the framework of austerity. Consider what makes most people feel their lives are worth living - being a member of a family, having friends, being able to work, to socialise, to have hobbies or interests. Whatever those individual choices are they are too an extent universal - the security of those factors is what makes most of us happy. Lord Scarman is talking about contractual decisions, but it applies perfectly to assisted dying because what that is really about for most people is practical choice. 

The government have made certain practical choices to deal with austerity - they have chosen to place the burden of cuts on the most vulnerable. This in turn affects the ability of individuals to exert practical choice and control over their own lives. Without sufficient support to access society, to participate in everyday activities quality of life is severely reduced. If the practical choice is available and enforceable to have the support to access all those essential areas of life, then the nature of that individual value judgement on their quality of life changes. Without that practical choice there is an inherent element of duress in every decision about living, let alone dying. Within the legal framework surrounding economic or contractual decisions, the contract is considered to be void if there is an element of duress, it does not take an enormous leap to understand how that element of duress present in decisions about assisted dying should equally mean the decision is considered void and therefore should remain illegal. 

 The fear of becoming disabled is widespread in society, disabled people are used to hearing people tell us that 'they would die' if they couldn't 'walk, run, swim, work' etc. The reasons for this are complex, partly based upon fear of the unknown and the prejudicial attitudes to disabled people inherent in society. Its also understandable, less than 10% of disabled people are born with their impairment, the vast majority will become disabled in adult life, whether via accident or more commonly illness. Becoming disabled is distressing and challenging, but the vast majority of people go through the stages of grief and eventually learn to be happy with a very different life than they may have expected. Different can often mean more rewarding. 

 That understandable fear means that most people do not realise that living as a disabled person can be a happier, fuller life than it was before disability. It means that people see death as a better option, not knowing that disability is just one of the many experiences life throws at people, and that it is how we as individuals are able to deal with those experiences which most influences that qualify of life. 

Today is the eighth annual Blogging Against Disablism Day (#BADD) hosted by the fantastic Diary of A Goldfish. It will be my seventh #BADD and I've watched with interest and sadness how the focus of many of the blogs written for the day have moved away from independent living to the impacts of austerity. Cuts to welfare impact human beings, particularly so upon disabled people. Quite literally, when the government cut, we bleed. The consequence of increased poverty and exclusion from the world is one issue, but when put alongside the increased focus on working it is quite another. What this means in practical terms is that it was quite bad enough for disabled people when all we had to deal with was exclusion - it is frustrating to be unable to access the world because you are excluded by that world, but a terrifying Orwellian nightmare to be excluded, blamed for that exclusion and expected to participate more fully. 

 So, until such time as all disabled people have a legally enforceable right to independent living I will, albeit reluctantly, remain opposed to and campaign against assisted dying. I will put my time and effort into something which would benefit all our lives, where the right to assistance to die is built into that framework of the right to live, where if assisted death is an individual's choice it can be made freely and without duress.

Do You Know What You're Asking? #BADD

I remember it vividly. My last day at work. Well, I say last day at work, more accurately my last day trying to go to work. I was yet to be diagnosed with Ehlers Danlos Syndrome and very unsure whether I was actually ill or somehow doing it to myself as everyone around me believed. 'Just try a bit harder' was my mantra, acutely aware that the job I'd worked so hard to get was in jeopardy if I didn't manage to overcome my sickness absences.

So, like any other work day I hauled myself from bed, trying desperately to ignore the shaking and waves of nausea. Dressed, limped to the car and set off. Still feeling terrible as I drove I desperately attempted to use mind over matter and convince myself I was fine. Turning onto the motorway, pulling into the fast lane....so far so good.

Until, without any warning I threw up. Repeatedly. Forcefully. Still in the fast lane, still travelling 70 miles an hour. Except I was now dripping with vomit. Everywhere. My clothes were soaked, the inside of the windscreen was running, and the steering wheel was overflowing with puke.* I was so focused on reaching work that I carried on driving. Thinking somehow, someway I could sneak into the building, clean myself up and do my day's work without anyone noticing.

It took another junction and the cold, congealing vomit I was sitting in to bring me round to the concept that there was no way of hiding this. I was saturated and stinking, didn't have any spare clothes with me and even working in an isolated office knew I could not get through the day without someone attempting to track down the source of the foul smell.

In that moment, as I pulled off the motorway and turned around to go home and clean myself up that I knew. This was the end of my job. My employers had been as accomodating as they could through all the failures of access to work, even trying to provide some protection by 'medically suspending' me in the hope the equipment ordered by AtW would actually turn up and had given me more paid sick days than I'd managed to work. Astonishingly they were still willing to find some way of employing me, but I still knew. This was it.

Somehow, despite my not having worked long enough to be entitled to an unpaid sabbatical my employers managed to arrange it. I had 12 months, after which I'd be guaranteed a job at the same grade and same hours I was working when I left. Not my job to go back to, but it would be a job. 

A year later I had been diagnosed with EDS, but I was far from able to return to work. I'd done my best to try and learn to cope with my condition but I was too ill, both mentally and physically to stand a chance. Decades of mistreatment by disbelieving medical professionals meant I found it impossible to find a rheumatologist, pain management or physiotherapy. I had no way of knowing if I would ever have that kind of support and no way of returning to the workplace.

Eventually I started to find my way back to living. I found the confidence to join an online forum for others with Hypermobility EDS, a small, supportive community rich with emotional and practical advice. I was so ill I had to learn to walk and talk again. Alone, without any professional support. I was so weak when I started that I couldn't even tolerate a full minute sat on a wobble cushion. It took months of adding 30 seconds a day to the wobble cushion time before I could even consider the challenge of relearning to walk. It would be several years before the magical day I managed to make it the 50 meters or so to the corner shop and buy myself some chocolate. It took four years to build enough confidence to consider starting this blog.

After five years I started to dream about working again. At various times I tried New Deal for Disabled People and Pathways to Work. They would talk alot about CV's and two tick schemes, but when I asked about professional retraining or whether they had links to employers willing to employ home workers I would be directed to photocopied job adverts for jobs I was physically incapable of ever doing. So, I wrote, I managed my condition, I learned all I could about anatomy, physiology, physiotherapy, speech therapy and I worked at it. Every day.

I learnt I could manage my symptoms if I listened to my body. I learnt that I could be happy, happier in fact than many of my able bodied friends living the life of career, marry, babies that like every other middle class girl I was supposed to grow up to do. I learnt of my community, our history, our common challenges and our differences. I learnt that I could pay forward the support which had been offered to me by a community of strangers. That in doing so I could feel worthwhile, like I was making a difference and contributing to society. I learnt that I could survive the bureaucratic insanity of the NHS and welfare state. I learnt never, ever to trust welfare advice after months of receiving the incorrect benefits plunged me into debt. I learnt to learn the rules myself.

It started to feel as though there was light and hope. And then, the Coalition government were elected. I learnt that they intended to target sick and disabled people's vital support in a way more extensive than any of us could have dreamed. Along with a tiny minority of our community I learnt that this targetting was dreamed up by people with no concept of living without vast resources, no idea of the reality of life with chronic health problems or the huge, yawning chasms in the existing 'support' systems. I learnt that these decision makers were clueless, which made them callous and cruel. Cruel enough to even consider condemning some severly disabled people to their beds.

Over the next two years I learnt exactly what determined, angry and organised people can do. I learnt that those of us who've learnt how to pick ourselves up from the darkest of places, over and over again, will always find a way to do so again. I learnt a sense of fierce protectiveness for others in my community, for those more sick than I, for the children yet to join us, for those so utterly voiceless that being tortured is their daily experience.

I made new friends and learnt how powerful a bond people can form with each other through the commonality of exclusion. We learnt new skills, politics, strategy, PR, policy and precedent. We had all learnt that most basic of lessons; that its always worth a try. With this in mind we ran national campaigns, lobbied parliament and Peers, developed our own media, rationalised and reasoned. When we were ignored I learnt we could come together to produce our own evidence.

The Spartacus Report was born of desperation and tears. Speaking to Sue on the phone she mentioned we should probably pay more attention to the DLA reforms. I cried. And cried, and cried. With exhaustion and hopelessness. And so we agreed. The one with slightly better health than the other would lead, and the other donate brain time every day. And so we did. Others joined us, all of us working desperately, primarily from bed. We had no idea we were creating an entirely new form of protest, a 'from bed activism' or an entirely different, radical new way of working for sick and disabled people. We had no idea because we could barely get through each day.

Sue's in hospital now, being fed by tube and waiting for surgery. She's my friend so I don't want to think about how poorly she really is or what that might mean. It goes both ways, she doesn't like to think that about me either. Yesterday we talked on the phone and tried to remember last year. We recalled multiple courses of antibiotics for both of us. For me a plaster cast on my wrist, a serious fall from my wheelchair, the day my neck became so unstable I feared waking up a quadriplegic, the rotated vertebrae which still move around disconcertingly and of course the having not been able to speak properly since October. We remembered that there was much, much more we couldn't remember. We remembered the days of having to keep hanging up the phone as neither of us could get off the loo, of reaching a point that we wouldn't bother to hang up while one of us vomited, and the days one of us was so fearful the other might die that we'd just stay on the phone. In case. So there was someone to phone an ambulance.

Throughout all this we both tried to convince ourselves we were fine. That somehow, being in pyjamas, usually opiated more than halfway to oblivion while we worked couldn't damage our health. We worked harder at convincing ourselves of that than almost anything else. That, and that there would definitely, totally be some way, somehow from this that we'd be able to earn enough working from home to not have to rely on benefits. That we'd find an employer somewhere who wouldn't mind the sick. Or the poo. Or the medication. Or the occasional declarations of wanting to be a duck.

Unsurprisingly it hasn't ended brilliantly for either of us. 

Last night my larynx collapsed again and I choked. Alot. Unattractively, coughing and vomiting into a bucket brought to my bed. I'm staying with friends, at home I'd have coughed and vomited onto my bed and had no choice but to sleep in it. Here I get a bucket brought to me. That's spoonie luxury.

The thing is, I'm with friends in Birmingham so that I can go to Naidex. The idea was to go and look at wheelchairs, then meet up with other friends for lunch tomorrow. I planned it all very carefully. Drove here on Sunday, spent all of yesterday resting. But then there was the choking thing. And the definitely aspirating some of the vomit thing. Then the waking at 6am to do some full blown vomiting thing.

So, now it's gone 10am and I'm still here in my slightly sicky smelling pyjamas. There's definitely puke in my hair, so I can't go anywhere without washing that out. I also can't get it together enough to have a shower and wash my hair, let alone find the skills to control 2 tons of metal on the roads, so there won't be any wheelchairs for me today. Instead I'll stay here on the sofa, I'll try not to worry too much about my sick Suey in hospital, or any of my other poorly friends and force myself to focus upon the lessons learnt in the past nine years.

And I'll do my absolute best not to think today about the 40,000 sick and disabled people deemed fit to do some work at some point, with the right support, who lost their benefits yesterday. The people who've worked hard, paid tax and national insurance. The people with conditions like cancer, Parkinsons, MS or bi-polar. The people who's contributory Employment Support Allowance ended yesterday when the twelve month time limit was brought in to apply retrospectively. I'll try not to think of them, not to think of the potential problems to come when Personal Independence Payment comes in. I'll try not to think, with guilt of the nine years I've had to learn to adjust to living life with both disability and chronic ill health. I'll try not to think that even with all that experience, the ability to manage my symptoms, that reality just doesn't work that way. Try not to think of however hard I try, still being too sick and disabled to function.

I'll try not to think any of that, because if I do, all that will come is fear and tears.

And I'll try hardest of all not to think if politicians really know what they are asking sick and disabled people to do. I'll try not to think that, because the terrible, terrifying answer is that yes, they do. And that a ruthless, brutal form of Darwinism means they have every intention of doing it anyway. 




*Huge apologies to Hossylass, the next owner of that car, who is hearing the puke story for the first time and probably realising that it's the source of the crud it was impossible to clear out of the steering wheel! 


"The Ministry of Magic has fallen. He is coming. HE is coming"

 As England celebrated the fairytale wedding of a beautiful princess and a handsome prince watched by a willing world bouyed up on good humour, pageantry, pomp and circumstance another, less visible England continued as normal. Parent's awoke filled with pride for children the world will never see as they do, princes and princesses of courage, determination and innovation achieving day to day miraculous successes not marked by champagne or celebration, but by preparation for the next battle to be fought, the next prize to be won on the long and winding road that is disability.

Today is the 5th annual Blogging Against Disablism Day and in the last year many things have changed. The Dark Lord has taken over the Ministry for Magic, installed his own Minister and embarked on an ideological war. Daily propaganda is printed and fed to a willing media about the scandal of Mudbloods; a population fearful for the futures of their own children buy into scaremongering stories about the cost to the public of supporting Mudbloods and bury their heads in the sand, denying the prospect that one day, as we all do, they too will become Mudbloods and fear the brown envelope delivered by postman not owl to inform them they are no longer considered financially sustainable.

When that day comes, despite all the warnings, all the challenges raised by those already labelled Mudbloods, it always comes as a surprise. As if being a magical person somehow protects from the dark forces of life, accident, illness, injury, despair. By the time that lesson is learnt the Mudblood file is already filled out at the Ministry, a 'useless eater' label applied and families make ever desperate attempts to protect their much loved Mudbloods from a pre-destined fate they believed themselves magical enough to escape. 

There is no escape.

"The Ministry of Magic has fallen. He is coming. HE is coming"

And unlike Hermoine, the Mudbloods of today's England have no Harry and Ron equipped with courage, compassion, loyalty and sense of innate justice to wave their wands and wage war as we are held down and labelled with Mudblood tattoos on our inner arms.  We have no Dumbledore to advise us, to leave us clues of how to challenge such dark forces and win. We don't even have a Dobby, fiercely protective to the very end, willing to sacrifice everything in the battle for right and wrong.

Instead we take up our wands, in the form of computers and keyboards to weave our wondrous words and hope that you, the as yet still magical people heed our warnings, our understanding that once just one person is labelled a Mudblood there is no end point but the destruction of all Mudbloods, labelled Mudbloods for reasons entirely beyond their control by a small group of wealthy, powerful dark witches and wizards bent on shaping the country in their image, seemingly ignorant of the fact that one day, someone they love will receive the letter informing them they are now a Mudblood too and no longer financially sustainable.

Announcing One Month Before Heartbreak

Huge thanks to @funkyfairy22 who blogs at Writer in a Wheelchair for organising 'One Month Before Heartbreak'


One Month Before Heartbreak is taking place from 14th – 16th January 2011.  This is a blog swarm (or blog carnival) style event somewhat similar to Blogging Against Disablism Day (BADD).    A Blog swarm is where people come together to post on their own blogs about the same issue and then share the links on a master list.

Drastic cuts have been announced in the UK to help reduce the monetary deficit.  The proposed cuts appear to disproportionately target the more vulnerable members of society, including disabled people.  When the cuts were first announced the government freely admitted that they hadn’t carried out a full analysis of the likely impact on disabled people.

The cuts include:

Removing Higher Rate Mobility Allowance from people in care homes, a move which is likely to make many people prisoners in their own homes (and possibly in their bed in some cases as HRM can also be used for specialist powered wheelchairs).

Changes to the way Disability Living Allowance (DLA) works.  One of the proposed changes is that all existing claimants should undergo a medical to ensure people aren’t receiving it when they aren’t entitled.  A costly and potentially pointless exercise as medical evidence is needed before DLA can be awarded and some claimants go for medicals anyway.  DLA also has one of the lowest fraud rates of all benefits in the UK – I’m not a benefits expert but I have an incurable, lifelong disability – and an indefinite DLA award, I’m probably one of thousands of DLA claimants in similar circumstances.  Sending me for a medical would cost a lot of money and achieve nothing that the forms and medical notes my doctors have provided hasn’t already done.  All in the name of trying to save the government some money.

Another change to DLA that is being considered is changing it to something called PIP (Personal Independence Payment).  With DLA if you have certain conditions your disability is recognised and you get it automatically.  If you are considered terminal there is a fast track system.  PIP as it’s been described appears to have neither of those safeties.  One of the main things which would be looked at with that would be how well you can use aids and equipment.  For example, it’s pretty obvious that a wheelchair user has some mobility problems, if they didn’t they wouldn’t use a chair, after all.  But under PIP rules they could be ruled to have no problems with mobility if they can use their wheelchair independently.

Council funded care has been cut.  The Independent Living Fund is ending which could force more people into care homes..  Access to Work has had greater limits placed on what it can provide which will make it harder for disabled people to find work and potentially may mean some disabled people who are working have to stop.  Free bus passes are being withdrawn making transport more difficult.  We are treated by the government as second class citizens and hate crimes are increasing.

There are other cuts planned.  The 12 Days of Cripmas is a topical take on an old Christmas carol and lists many of them.  Chilling but well worth a watch.

The Broken of Britain is a non party political group which was set up by Bendy Girl to help give disabled people a voice in fighting these cuts.  Many disabled people and our allies have shared their story, e-mailed their MPs or done whatever they can to help out the cause since it was launched.  One Month Before Heartbreak is one of the projects we are doing this year.

As I said above it’s a blog swarm which means  people getting together to all blog on a subject or a theme at a specified time.  The hope is that by all writing at the same time it raises awareness and makes more of an impact.

The consultation that’s currently ongoing about DLA reform ends on 14th February 2011.  Which is Valentines Day, traditionally a day for love but which could severely affect disabled people if DLA reforms aren’t handled correctly.  We need to ensure that our voices are heard.  We’re holding this event a month before the consultation ends in order to raise awareness of the consultation and give people to chance to respond to it if they wish.  Bendy Girl came up with the name One Month Before Heartbreak.

If you want to take part,  write about whatever you want.  Obviously, it should have something to do with disability and it would be great if you could mention this event and Broken of Britain.  You don’t need to write specifically about the DLA consultation and your personal experience.  Those are welcome but this isn’t topic specific.  You can participate on one of the days or on all of them – it’s up to you.

Nor do you need to write.  You can do a video, a recording, write a poem, draw a picture, anything you want!  Sharing links and supporting those blogging is also very helpful

I plan to make space available on my own blog to anyone that doesn’t have somewhere to share and wants it.

You don’t need to be disabled or a carer or come from the UK to take part.  For our cause to be successful we need support from the international disabled community and from the non disabled community worldwide.

The full details of One Month Before Heartbreak (as they stand now) are available here

One Month Before Heartbreak
A Broken of Britain
Blogswarm

14th – 16th January 2011

 
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